What Multiple Sclerosis Topics Interest You Most?

How about any information regarding any studies that have been done on the psychological impacts of MS on young adults? It’s a broad question I know, but I would be curious for the sake of comparison. I recently saw therapy/counseling being advocated for the newly diagnosed to help limit disease progression, and as someone who was diagnosed at 17 (28 now) I couldn’t help wondering why counseling was only now being embraced as a part of treatment.

Insurance coverage. How to eliminate the concern of not being able to pay for medication.

Hi,

Could you find out any up to date and factual facts on people who die as a result of MS. I believe you may have touched on the topic. In the TV and media there is a misconception, that people usually die of MS or due to relate complications.

Since people die with MS but not from MS, how do we bust the persistent myth about MS being a fatal disease.

Talk about how diet and exercise really work… Swank diet and its longitudinal study … there are more, this is just an example.

1. Silent lesions 2. Ampyra 3. Gilenya

How many people get diagnosed with MS turn out to actually have Lyme disease? Is there any trend of Lyme disease being misdiagnosed as MS?

2ndary MS? any treatments? All that is known about it?

I would love to see absolute data on all the the MS DMDs. Most info on the effectiveness of DMDs is given in relative statistics (fairly meaningless). Absolute data allows one to better weigh the potential benefits/risks when making treatment decisions.

I would much rather know, for example, how many people (and the percent) who were relapse free on a DMD and how many in the placebo (or comparison group) were relapse free.

Thanks–hope you’ll get to this.

How about bone barrow transplant or stem cells. How close are we do actually repairing the nerve damage caused by MS?

I would like to see geographical information about where MS is most prevalent in the USA. A map that enabled people to anonymously post there physical location would be perfect. If it was possible to take it once step further it would be good to have a secondary map indicating where people spent their formative years; say youth through high school.

Any tips for improving short-term memory and executive function?

The impact of nutrition and exercise on ms.
The bad influence of dairy on ms patients.
Will the drug BG12 be benefic to people with ms?

How many people in the U.S. are truly living with MS? The statistics say 400,000 but I have also heard there are 20 new patients diagnosed every day, the 400,000 number has been around for years, it seems it must be much higher than the estimated 400,000.

I would like to know about disappointing, insensitive, not comprehensive MS neurologists and their staffs. Sometimes, we’re uncomfortable criticizing our neurologists or past neurologists, especially if they are well known, in a shared forum. A “best list of MS neurologists” may need pruning. A list of “I don’t recommend” MS neurologists would be so good.

A comparison of chosing natural treatment as opposed to medication. The side effects of injections (being sick and depressed) were enough to sway my husband away from medication so he’s been taking a multitude of vitamins daily for the past 4 years. It is clear the drug companies are all about marketing their newest drug and so the natural choice does not get advertized. It’s all about that all mighty dollar; especially in the US. My husband’s neurologist has even stated that he is not technically his patient because he isn’t on any medication. Where does an MS sufferer fit in when he or she choses to take the natural path?

Discussing MS with friends and coworkers. When to let them know. Why some people choose to keep it private, or only to immediate family and close friends. Impact of MS symptoms on ability to do your job (particularly interesting to me since this ridiculously hot and humid summer has made for many FMLA days for me).

Julie, A couple times a month, new MS research results make headlines, and we with MS are alerted to the news. It would be very helpful if each month you would write a paragraph or two helping us non-scientists interpret these “breaking news” items — even when they are only preliminary.

For instance, sodium MRIs have indicated there are dramatic increases in total sodium concentration (TSC) in the brain of (a few) patients with advanced RRMS, and that the pervasiveness of this sodium build-up in the brain is directly correlated to disability.

I know nothing about sodium build-up in the brain. Does it happen to people who don’t have MS? What would have made researchers link this to MS? Does it indicate a malfunction of some body system? Is it in any way related to salt intake?

Julie, we’d like to see a chart or statistics on the relative efficacy of all MS drugs individually. We know the CRAB drugs are the least efficacious and that Tysabri seems to be the most successful in retarding progression and exacerbations – but we’ve never found a head-to-head comparison of efficacy.

I would love to see an article about dual diagnoses of MS and other autoimmune diseases, including how often this happens, most common combinations, and any other aspects you find important. In addition to your info, I’d love to hear from your other readers who are in this boat. I’ve had MS for 30+ yrs and was diagnosed in 2010 with Undifferentiated (aka Unspecified) Connective Tissue Disease. I have some symptoms of RA and some symptoms of lupus. Now I see a rheumatologist along with a neurologist.

M s is the hardest thing I’ve ever dealt with but my symptoms are I cannot write anymore I cannot read anymore mmm I cannot see as well as I use to be able to I cannot play video games anymore what else do you want to know oh yeah I forgot I cannot walk. I’ve come to accept it and I have realized that the things that I cannot do are useless but the things that I can all worth more than life.

I am on Avonex, but not sure it is the best drug at the moment. What is really better and why and is it available in South Africa, where I live? I am desperate and want to get better.

Strategies when disability income doesn’t come close to covering expenses.

I’d like to see something written about swallowing problems. I have problems with this at times.

I’d also like to know what kinds of exercises are good to do to strengthen the muscles that have been weakened.

What are the pros and cons of filing for SS disability?
Items such as where to start, and what kind of paperwork is required. Anything that would help someone who has made the very difficult decision to file for disability would, of course, be extremely helpful!

Has anyone tried electrostimulation therapy in conjunction with mild exercise,stretching.? Do you think it helps ,or does it have no effect at all?
I have progressive ms and i’m not sure if this is helping or making my condition worse.

I would like to know about MS relations to siblings and children…my sister and I both have it…she is the oldest of 3 and I am the youngest…our middle sister has never had a problem..my sister is very chronic and I often feel guilty that I’m not as sick as her…when she was diagnosed, we were told it was not heraditary for anyone..since then I’ve heard differently…even when she knew and recognized my early symptoms I refused to believe this could also happen to me. I now have a son who I’m always looking for signs as he is exactly at the right age for things to happen…fortunately, he is fine, but it scares me alot somettimes

Talk about the need to educate. Help Raise MS Awareness!

Visit the Facebook page, Fix Ms Now, (http://www.facebook.com/FixMsNow/) and click the “LIKE” button in the top right hand corner. 

If you’re a dog lover like me, post your cute doggie photos so we can all say, “Awwww!” while reading about MS news and research.

Something on natural treatments, alternative ways, supplimental therapies, diets that helped somewhat. We all know there is no cure. And now that I am taking one of those CRAB drugs I seriously wonder if any of these therapies have any effect, which in my experience I think they don’t seem to slow the number of attacks. At least for me. What else is out there?

Also, how do people work out with such fatigue? I can’t fo it. They say you need to exercise. How? I am wiped out just by doing dishes or just doing nothing.

Thanks

Would like information on the fibromyalgia and ms. The differences, stats on miss diagnoses. Can you be dx with fibro and then ms. My life is a wreck. I need help!

Stress, trouble sleeping due to muscle spasms, side effects from medications and depression that may go along with a chronic illness like MS can all cause fatigue.

I would love to read about how rare or common it is for MS to run in families. My mom has MS and now I’ve been diagnosed. I’ve also met a brother and sister who have it. Is this rare? Could you discuss the concern with having children who are predisposed to MS.

I would like for you to write about the paleo diet and the pros/ cons

Fatigue how to combat it! Short and sweet!

Just keep churning it out Julie

Some stuff isn’t as relevant to me as other stuff is, but it’s all worth looking at

Why can’t the CDC collect data from every neurologist on numbers of patients with MS? We need geographical specificity in order to determine environmental factors other than sun exposure.
A national registry by numbers (not names) to follow this.
Needed: specific vitamin supplementation and dietary instructions.
Needed: are there brain exercises to rebuild neuronal connections which MS have destroyed? (beyond yoga, meditation etc.)

I know swallowing can be an issue for us. But, what about having a need to clear your throat when you are tired or your MS is acting up? I have this issue and it’s obvious to me that is related but my doc doesn’t seem to think so. Are there others with this symptom?

Also, I would love to hear from MSers who have undergone chemotherapy for cancer. I went through chemo last year and it made my MS worse. I’m still trying to get back to a “normal” feeling.

Thank you!

I would like more info on Tysabri — particularly hearing from folks on their experiences with this drug. I was on Rebif for 2 1/2 years and I have to say that they do a great job getting information out to people through mailings, web site, phone calls, etc. My doctor decided that I should stop the Rebif and try Tysabri, which I have been on for 7 months. I am doing somewhat better. But I LONG to read the experiences of others, both good and bad, but it seems to be difficult to find much information. Maybe I am missing something. Can you help?

Could you talk about the effects of MS on cognitive thinking and is it possible that MS could cause a person issues with the mental aspects of working to the point of it not being possible to effective in the workforce.
What might one do to overcome the overwhelming issues in thinking and focusing daily.
Thank You

All comments above are good, but I would like to know more about:

**Best websites for latest MS info, both technical and social

**More info about trips in US and abroad where staff /agent/etc is supportive and has a true understanding of physically handicapped people and how to make trip friendly for them, This could include websites, travel agents, or people at specific places that would help at that point of travel. I would guess that would be more available in countries such as Scotland, England, and Canada where MS rate is high.

***More about Myelin Repair Project and its approach to research. (It was cited in Newsweek article for this.)

**Would truly love a resource state by state index of home builders/ remodeling professionals who are certified, address, or have experience in handicapped houses. I think many folks say they they are, but I would need some kind of recommendation from someone who has used them.

**And last, a group or organization that works with stores, etc, to make these places truly handicapped accessible. Handicapped people have money to spend in stores, too, I think retail places forget this. Wouldn’t it be wonderful to have some kind of public recognition for businesses/places/organizations/tourist sites that really do make handicapped accessibility a priority and not just put up a sign that says handicapped accessible?
At WalMart and other retail places there are very few places to sit in a chair. Perhaps you can still walk, but after a bit you would just need to sit and do a bit of chair yoga and then you could finish shopping!

In our community there is one lady who has been recognized for her efforts in doing the above. She is handicapped and works with places. Then they get good press for their work.

But you know…it takes a village!

So, I thank you for your job….and I hope there were not too many suggestions from me.

How does a person with MS, who has come to the very dificult decision that they just cannot function in the work place anymore, go about the process of filing for disability. I have heard it is a very complicated and a very discouraging process.
Thanks Julie for the MS Posts. Your’s is the one of the few sites I actually get anything from.

Hi Julie,

Thanks for this opportunity.
1. More hard data on effectiveness of CRAB and Tysabri
2. infor on using antihistamine for ms treatment re: Stanford Study here’s the link http://www.ctsaip.org/create-pdf.cfm?id=5893
3. Big Fan Of Scott at Myelin Repair Foundation which I feel holds a lot of hope for us msers…

MS treatments seem only to reduce the effects of any relapses, but not stop the progress of MS. A comprehensive data base on possible treatments for particular MS relapses and side effects would be beneficial to establish if the ‘treatment’ does more harm than good.
With constant tingling in the arms and frequent headaches – is it better to suffer in silence and only take medication as a last resort.
Worry is if medication is taken, the effectiveness will reduce over time and therefore larger doses will be required – thus is it better to not take medication unless the symptoms are intolerable?.

Hi everibody
I wonder what effect ms has on our sleeppattern: since i stopped with copaxone i got sleepingproblems and heartbeatproblems.
Now afther a year i still have sleepingproblems fortunately no heartbeat problems anymore.

Understanding the difference between new symptoms and irritation of old symptoms. Silent leasions and perhaps something on understanding MRI lingo like what it means when they say no highlights with contrast but presence of new damage?

1) dealing with cognitive difficulties

2) getting someone to help pay for copays on these expensive medications like Gilenya and Tysabri

How about current and pending reseach on Primary Progressive MS?
Use of DMD for PPMS – as a precaution to thwart progression of disease.

Please discuss the relationship between TOS (thoracic outlet syndrome) & MS.

My daughter(severely disabled by MS for 15 years) is about to have surgery for TOS, hoping that her blood flow will improve and her MS symptoms will subside (legally blind, full body tremors, etc.). She had undergone 4 angioplasties for CCSVI, but wouldn’t have a stent and her jugulars restenosed. After one of the angioplasties, she was thrilled to be able to feed herself, but it didn’t last long.

Years of drugs (Avonex, Copaxone, Tysabri) stopped when my daughter heard of Dr Zamboni’s research on CCSVI.

Now, the lastest research is being done on TOS. My daughter will have her first rib removed in order to promote needed blood flow which should help her MS symptoms. Of course, I believe, also, that stem cell (her own) injections would help restore themyelin on her optic nerve, but according to the MRF (Myelin Repair Foundation) that won’t happen until 7 more years. Since my daughter has been disabled since the age of 20, she won’t wait 7 more years.

More open-mnded acknowledgement and research into nutritional approaches to reducing or stopping the effects of MS.

Often, the official mouthpieces are quick to pay lip service with the expected “oh, take vitamin D3 and a mulitvitamin,” or write off a diet or two instead of looking into how cleasing the body of processed foods –essentually a raw foods diet–could be a turning point. Furthermore, why so little attention is paid to the research of former MS sufferer Dr. Terry Wahls, who is living proof of the effects of a radically different diet’s effect on MS.

NMES (neuromuscular electrical stimulation) in MS. When to start, If to start, in conjunction with exercise, what device, what protocol, supporting peer-reviewed literature.

For me this is a key topic since progressive muscular weakness and loss of function is a major part of the decline seen in most MS patients. What are your thoughts and experience in this area?

I wondered what ever happened to Sativex? I knew it wouldn’t have much of a chance of making it to market in the US but this drugs benefits far outweigh anyone’s conservative belief’s of pot . I understood it to be a non-synthetic, liquid spray that when applied in the mouth, it was quite effective with dealing with bladder dysfunction,and spasticity
Have you heard anything about it, recently?

I would like to know why we are charged such exorbitant prices for ms drugs. I think it is ethically wrong. Many people do not use them for that reason. You make to much to qualify for help and your insurance makes you pay thousands of dollars each year for the drugs. I don’t understand why the cost cannot be in line with other drugs. I suppose it’s because there aren’t enough people using them to make a stink about it. The money they get for the ms drugs just goes into one pot. It is not used specifically to do research on people with ms so I guess we are funding all the other drugs.

I would like to hear about people who have had MS symptoms for years and yet have not gotten a diagnosis even with multiple visits to different neurologists who cannot pinpoint any other diagnosis, but clearly know with tests that something is wrong. I know it is sometimes difficult to diagnose, but in the meantime, we wait in limbo with little support and families who think we are neurotic, when that has also been ruled out. Thank you for your website. It has been most informative and helpful.

Insurance issues: Subject: LETTER TO EDITOR of Neurology Now Magazine – ARTICLE on cost of Multiple Sclerosis Drugs

Dear Editor,

While I cannot disagree with your recent article on the prohibitive cost of MS drugs, I found it lacking in proposing any potential solutions for those who cannot afford the medications.

My husband, retired on disability, has been taking Copaxone for several years (longer than clinical trials have proven its effectiveness). Because my company’s healthcare plans have suddenly changed, we can no longer afford any of the MS drugs. We have been thorough in researching every possible path: explored plans with other healthcare insurance providers, spoke to federal and state health insurance offices, conversed with drug companies and our own physicians.

The options are just not there for us unless one can afford over $1000 per month in co-pays. Unless another option presents itself, we are left with following a holistic approach with nutrition and supplements and continued prayer.

I’m knowledgeable about the pharmaceutical industry, healthcare and alternative/integrative health. Perhaps we have chosen the best option by default.

Becky Jacoby

Pros and Cons of getting the shingles vaccine, or any other live attenuated vaccine.

Supposedly shingles occurs when the chickenpox virus re-emerges due to a weakened immune system as you age, but having MS means an overactive immune system.

Confusion reigns.

hi!!

how is everyone?
so, i listen, to a wonderful podcast called “Mperfect”.

on the podcast they talk about sex and disability.
so, they have covered subjects like sex and tb, sex and cervical cancer…etc.

anyway, i want someone to talk about s-e-x and M-S…please.
can you please…please talk about sex and ms with regard to intimacy, pain, and contraception. thanks

I would love to learn more about muscle spasms and MS. I have recently had my lower back muscles spasm so much that I can’t move or get out of bed, and this happened to me about five years ago as well. Does anything specific trigger it? What are some ways to combat it? Etc

I would like to know more about the connection between dental amalgams and multiple sclerosis. I’m also interested in the findings that suggest saffron is good for people with MS.

I am 39 and have been diagnosed with MS for 15 years. Aside from the MS I’m in relatively good health. I recently had an outbreak of shingles–itchy, painful, sort of alarming in terms of what it could signify about my immune function. I’ve tried to research shingles and MS,and I saw it mentioned several places, but nothing really definitive. I’d be very interested to read your thoughts on this topic.

I see discussions all the time about how cognitive dysfunction is common, but not as bad as some other things out there. I have had ms for over 35 years now, and I can tell you that the cognitive part is the worst for me. And it gets worse every day it seems. I will heat up the oven and put the pan in the refrigerator. I step on the gas when I mean to step on the break, and vice versa. I forget to shift into park before trying to turn off the key. I am afraid one day I will see people near the road and perhaps steer toward them when I am really trying to veer away from them. Help!

Billions of dollars spent , 100 or so years , a n incredible list of medical a

There is so much written about Relapsing Remitting MS, but very little about PPMS, or SPMS (Primary Progressive MS/Secondary Progressive MS).

How Fibro and MS DIFFER.

Billions of dollars , 100 or so years , and a huge list of talented and intelligent researchers and the best they can do is a few medications for RRMS only and most of these medications have become suspect lately , yet you hear almost every day now of something new to slow down or stop the dreaded disease, yet none of it is made available or we will have to wait for years .
We need it now not years from now, according to my neurologist there is nothing for SPMS so go home and wait my point being is when will we get some help we can use today not promises of maybe something may come in a few years lving on disability as your only support you dont have too many choices, and your frustration level is intense. Tell us something good.

I just took a webinar on HBOT(hyperbaric oxyalgen therapy). One doctor lives and practices in England, one here in the U.S. They have had
a lot of success with different levels of pure oxygen given within these chambers. The MS society even paid for these trials. (Basically to have proof it doesn’t work), On the contrary, the results were that it does help somewhat or significantly! The results were buried and never published.
These doctors say it’s because of the connection bet NMMS and the
drug companies. It has even helped SPMS. What a disgrace. They have the studies to prove it!

Stem cell therapy. Bone marrow and adipose. What’s new on that front.
To the person who asked about Tysabri. It is to work better as a first line drug. The CRAB drugs are pretty ineffective in the long run. I had a neurologist who takes Tysabri himself ( he has MS) tell me it seems to work better when the T cells are involved. Some patients have B cell involvement. It doesn’t seem to help then.

I would like to read about MS diets that have proven to be of a benefit to MS patients–eg. Paleo diet

I get hot flashes that last about 2 -3 minutes several times a day. My gyn said it’s not related to menoopause since I’m older and they only last a few minutes. Told me to talk to my neurologist, she said it could be MS related and suggested Evening Primsore Oil gel tabs. These aren’t wroking. Does anyone else have these heat sensations?

I’d like to know about voice problems when speaking. I seem to lose my voice randomly while speaking. Sometimes while out with friends and just having conversation, my voice will be hoarse. I do not know why.

Why is there so little written about PPMS? Is it because it’s hopeless for these people?

Does a vitamin B12 deficeincy effect those living with MS like a Vitamin D deficeincy?

What happens when you never have a relapse but symptoms continue to worsen?

When is it time to go on disability and what are the steps that need to be taken to make it happen?

How do you survive on a disability income without loosing your home and vehicle?

Hi Julie,

Firstly thank you for your posts, they really help to explain many MS issues.

I have SPMS and would like to hear more on this type of MS. My symptoms worsen slowly all the time, but then I have periods where one or more of my symptoms seem to get noticibly worse in a short period of time.

I find the lack of information on (secondary progressive,ms) scary and I get quite depressed on times.

Any information you can find will help
Many thanks for your efforts

Thank you for your newsletter and being able to read comments posted by others. I am interested in hearing about anything related to MS. I was DX in 2004, at age 54, but learned how my symptoms began when I was in my teens. Started with cognitive problems. Now almost every time I say that a symptom is “weird”, then I know it is the MS.
Your support in our mutual journey is very much appreciated

Although not FDA approved for MS, I have seen a great deal of information on low dose naltrexone and MS (LDN). However, it is not easy to interpret .I would be very interested in learning more about the pros and cons of this medication for MS.

Julie:

Keep up the great work! My wife has MS and finds doing the research on her condition too depressing. She depends on me to tell her about various symptoms and approaches to coping with them and your newsletters have been a real help..

I think that tips and suggestions for people who are living with someone who has MS can really useful. I have learned a lot from your blog and my wife appreciates someone understanding some of what she is experiencing.

Thanks again!

I had positive results a few weeks ago with liquid Baclofen being injected into my spinal fluid. Before I agree to having a pump implanted in my stomach, I need to know a few things:

1.) Does the position of the pump inhibit movement or cause pain (ie. can you still lie flat on your stomach or your side without feeling like you have a hockey puck in your body and does it push against your ribs or hip bone) ?

2.) Can you still exercise (ie. sit-ups or crunches) ?

3.) Can you sit for extended periods in a wheelchair ?

Thank you

Does Tysabri help to improve female sexual function? Tysabri has a booklet about the medication, but it does not cover that area.

Can a person be on disability and medicaid at the same time?

Thanks

Any latest findings regarding some improvement maybe in Stem Cell Therapy. Any hope there???

Any latest findings regarding some improvement maybe in Stem Cell Therapy. Any hope there???

Honestly, the information in articles you write are very helpful. Its always nice to know your not alone. Its been a rough path accepting I have MS, Living with MS and preparing for the future of MS. I have been diagnosed with RMS. I believe that the small things can help, and others would enjoy the tips of improving their daily lives… Such things that have helped me as:

Being on Capoxone
Gluten free diet
No dairy
and more…

I know others would like to know, and maybe there is someone out there doing something we’re not aware of?

Pat

I would like to read articles about:

Oral medications for M.S. that are and/or are not approved yet. How they work, likely approval date, possible cost to us, benefits, side effects, etc.

Why some people (like me) have several family members with M.S. and others do not.

Long term care (LTC) insurance for M.S. patients. (Julie: I recently was approved to have a LTC policy. I would be happy to provide you with the company name and/or my agent’s contact information if you want to learn more. As far as I know, this is the only company that will insure us.).

What works for people who live with chronic everyday pain. I take 80mg. of baclofen for muscle stiffness and spasms and 4000 mg. a day for nerve pain and i still have chronic lower back pain

Research and or thoughts from others on the emotional connection of ms and a person’s childhood rearing!

Julie, obviously a lot of interest in your request for topics, all are great. Please just keep doing what you do, as said before your emails I receive are one of the few connections I have with others. Maybe some more in-depth discussion of just that, how to get more of us connected to discuss all of these concerns. My personal request would be a discussion/information on the nitty gritty of relationships and how MS can make one feel isolated, from immediate family,spouses etc. Keep it up! I’m not a great “joiner” of organizations etc, but love people. How do I get more one on one discussions with other MS’ers. What web sites, etc.

I have two questions:

1. I understand that MS therapy is the second most expensive to ALL therapies. WHY? With so many people in this country suffering with MS are we just being taken advantage of OR is there a real explanation?

2. My significant other is not able to get involved with my problem and it is very upsetting to me. I need someone to talk to about this issue. A there any really good resources for opening the door to discussions about MS?

I’d like to hear about what exactly triggered people’s first MS attack. Were they ill with the flu, under great stress at work or school, pregnant with their first child, bitten by mites or ticks?

Also, what is the incidence of MS among siblings. There seems to be a genetic component involved, but what does science know for certain? Why do some siblings get MS and others do not?

Jerry from Seattle/Renton well expressed my interests: how to be connected to people like me, who understand my issues. And that’s hard, because MS affects everyone so differently. I think I’ve become more quiet, introverted, pulled back, separated from people since the MS Dx. Part of it is the depression, constant muscle pain that seems untreatable. How do I get myself out of this cocoon?

Thank you so much, Julie. Your messages mean a lot.

I’ve been diagnosed with Primary Progressive MS. What are the symptoms in PPMS and has there been any progress in defining the differences between PPMS and RRMS?

I would like to know more about how to deal with the invisible signs of MS (cognitive losses, fatigue, etc) when you have no visible signs. I don’t want to be a whiner, but it can be hard to find anyone who will hear and help with problems when they can’t be seen.

Two possible discussions:

1) Incontinence – both bladder and bowel. If so many MS people suffer from this, why is so little written about it? How do people cope? What do they do medically?

2) MS patients who also have another chronic disease. In my case, it is post-polio. Are there doctors or clinics who address the effects of more than one chronic disease on an individual?

My mom will be starting copaxone injections daily in the next month or so. What can I do to make it more easy for her? What is some good information to know to be able to help her out during this transition? Thanks.

Julie,

1. I would like to second the comment from Tammie (14) in regards to the ACTUAL figure of people with MS in the US and world. I have heard/read 400,000 for over 7 years now. i have asked other experts, at conferences, etc and still continue to get that number. i don’t know how it can remain unchanged unless there are a large amount of patients die each year – which i do not think is the case.

2. Dealing with Uncertainty in Chronic Illness/MS.

3. Any new studies on vitamin D, B etc and complimentary therapies such as Tai Chi, Meditation. THANKS! Darleen

Hello
I was diagnosed in Dec.08. since I have taken Betasuran injections. My biggest problem besides drop foot in both feet is that during the day my feet feel ICECOLD around 7 p.m they warm up.
This is not only painful, it is almost impossible to walk at all. It is extremely wierd to me and scary.
I wonder if anyone else has this problem or have found a solution to this issue.
I feel like I am just waiting for the ball to drop. Please let me know of any insight you may have regarding this or any wierd ms symptoms.

THANK YOU

Also, I would love to hear about actual experiences withthe “MS itch”. I recommend we use “MS itch” and not pruritis in order to familiarize the many medcal personnel, including dermatologists (!), who do not know about this neurological itch. Which medication was successful (and dosage and timing ) or didn’t work? The antihistamine Hydroxyzine didn’t work at all for me. Currently, taking neurontin (300mg/3x day) — some relief, but not enough. The dose was just increased. I am hopeful. The itch can be unbearable.

I would like to hear actual experiences with treatment of the “MS itch.” The antihistamine Hydroxyzine didn’t work at all for me. Nor did acupuncure and a prescribed herb. A couple of weeks ago, I was prescibed Neurontin 300mg. 3x day — it has provided some relief – but not enough. My dose was just increased. I hope it works –the itch can be unbearable.
THANK YOU

why do all neurologists look at u like we dont know what we r talking about. or that we r making these things up. u ask for one test and they do ten. then the bill comes. r they there to pay for those extrea tests. please help. we all need help. thanks for listening,moe

Hi Julie and everyone,I was diagnosed with PPMS 35 years ago but then went on to finish 3 marathons and completed my Masters Degree in 2007, however after a bad flu virus, stress at work and my beloved dog dying, my symptoms got much worse and I now walk any distances with a walking frame. My questions now are:-
1. Can we ger more info on PPMS, doctors seem to know little about this form of MS?
2. Is an increase in MS ymtoms caused by life stressors?
3. Can childhood diseases i.e Polio, Glandular Fever and Measels( I’ve had them all) cause an impairment in the Immune System leading to MS?
Thank you Julie for your column its very informative.

more info on transverse myelitis as well as benefits/detriments of supplements and diet – nutrition.

FEET PAIN — I am interested in the relationship, if any, between MS and foot problems: hammertoes, protruding bones, constant corns, aching soles, aching sides of the feet, etc. — and info regarding treatment. When unclear as to successful treatment, podiatrists have said, dismissively, “it must be the MS.” Well, I dunno, and what does that mean — that nothing can be done? THANK YOU SO MUCH.

Hello,
I was hoping you might have some insight into seizures and their prevalence in MS. I recently spent a couple days in hospital due to what I presume to be a seizure caused an MS flare. It started off like a complex partial and then progressed into a secondary generalized. MRI showed a new large area of active inflammation consistent with the initial symptoms. However, there is disagreement as to whether I have Seizure Disorder or “just” MS. Any advice? Thanks

I agree with Sally. I have been doing a lot of reading on the Swank diet and plan to discuss it with my Neuro next week. I have the book and have been reading message boards. Have you tried it?

Hi Julie,

Thanks so much for your expertise and time dedicated to the
newsletter.
I have a new symptom which arose about 3 weeks ago.
My right ear is hearing whistles and murmurs.
Very annoying at first, but now kind of used to it.
I know it is an MS symptom. It is better nowand seems to come and go.
thanks Julie and take care
Jamie

There was a new procedure being researched at McGill University in Montreal, Canada called Gift 15. This was about three or four years ago. What is the progress on this? I remember the doctor/researcher was very encouraged.

Itching in wierd places like a finger, a toe, an ear or any other part of the body for no apparant reason

I have more than average lesions all over my brain. Thankfully nothing is in the spine as of date. What cognitive issues will I be confronted with and with so many lesions and four major flareups in the past what reading materials might bring it home to me. Also, just how much does MS effect ED in men? Thank you for your wonderful writing skills and sharing your knowledge.

Thanks for your wonderful work Julie, always interesting and appreciated!
I am always interested in the nutritional aspects of MS, whether eating a certain food plan will alleviate MS symptoms or slow it’s progression, i.e. gluten-free, dairy-free, etc. Do you know of any such studies showing significant results in this area? I have found a gluten-free diet eliminated ALL of my spasticity, and no longer take baclofen or any other muscle relaxer. I was also asked by my neurologist to eliminate Sorbitol (an artificial sweetner found in almost all sugar free gums and candies) as they have been shown to create lesions on the brain. What other foods have this impact on us, dairy, preservatives, pesticides? Thank you!

Thanks for your wonderful work Julie, always interesting and appreciated!
I am always interested in the nutritional aspects of MS, whether eating a certain food plan will alleviate MS symptoms or slow it’s progression, i.e. gluten-free, dairy-free, etc. Do you know of any such studies showing significant results in this area? I have found a gluten-free diet eliminated ALL of my spasticity, and no longer take baclofen or any other muscle relaxer. I was also asked by my neurologist to eliminate Sorbitol (an artificial sweetner found in almost all sugar free gums and candies) as they have been shown to create lesions on the brain. What other foods have this impact on us, dairy, preservatives, pesticides?

I am very happy that you want comments/questions from those of us the are living with this MS disease. I found out 2 years ago after several MRI’s and the rest of the tests that identified that i have this terrible disease! Fortunately I have a family that tries to understand as well as me! I have a great husband after 16 years and 3 kids that try as hard as they can to help me have a good days aside from my varying mistakes! Cant’ drive or ride my bike anymore! It kind of works alongside the fact that i can’t be in the sun either!
That’s all the complaining i can do, it only upsets me more when i write about the stuff that i can’t do anymore!
Blessings to all,
Fellow MSer, Christine Shelton

I’ve read some something abut importance of the hormon melatonin for MS.
I know that melatonin has important antiinflammatory and protective properties, that are especially relevant for nervous tissues. Moreover, melatonin is connected with sleep and thermoregulation.
But I haven’t found anything about using melatonin in MS therapy.

I would love to see some information on a mother or other family members dealing with their adult children with MS. How do we know if they are just being lazy, don’t care or whatever, versus their brain just isn’t working right, and how do we approach them when trying to get them to see the importance of things?

What do you know about the use of a natural product called Protamdin and MS? Apparently Montel Williams takes it and swears by it, made by a company called LiveVantage? Thanks.

Hello
I have been taking 4-Aminopyridine for over three years now being compounded locally by a university hospital and it has been not working as well as at the beginning I want to know if you can tell me, does Aminodine or the other type of 4 Aminopyridine that is now being sold for much more money work as well as locally compounded four aminopyridine. Dean or better or longer if you can touch on that that would be great.

My daughter was diagnosed with MS about 4 yrs ago, she is 40 yrs old. She has a son 22yrs. old and just found out she is pregnant..Her husband and her are estatic, been married about 8yrs and he has no children, My question is how hard is this going to be for her, they took her off all her medicines for MS when they found out she was pregnant. She’s doing great right now, but I’m 1400 miles away, will she be able to handle this?

I am interested to read how people with ms deal with intention tremors. I have intention tremors in both hands and my head. I cannot carry anything with liquid or it will be all over me and the floor. When I try to put my lipstick on, my head shakes. I have read many articles regarding symptoms, however, intention tremor is rarely included.

Please address drinking alcohol and MS. I need to talk to my daughter concerning it and would like info before doing so. I think it is harming her and her MS.

Kathy, Women generally do very well with their MS during pregnancy. The elevated hormones apparently help protect against disease progression during the pregnancy.

Julie, do you have any info on MS and menopause? Any status updates on the MS and estrogen replacement study? Seems like I entered the “phase” of SPMS when I started having premenopausal symptoms. I was recently started on estrogen/progesterone and hope the hormone supplements will help lessen the slow, downhill slide with SPMS. I know there are slight increased risks for breast cancer, but having cancer is an unknown risk…where as I am pretty sure I know where this MonSter is going.

Thank you Julie for your blog!

Over the past year I have noticed my handwriting declining. I seem to “skip” some letters or it is not discipherable. I cannot write a sentence without having to cross out a word (or two). Does anyone experience this problem?

Do you know anything about a product called Protandim and its possible help for people with MS? Apparently Montel Williams takes it and swears by it. Any info would be appreciated?

I’m 55 and I’ve had RRMS for almost 11 years. My husband suggested I try adjustable hiking poles for when I’d hike on dirt trails with him. I loved them so much, I started using them on the street when I go walking. They are the great equalizers for me. They are very easy to use, help with balance and make me feel like I walk like I used to walk. I feel so normal when I’m using them. Walking is great exercise when you have MS (if you are lucky enough to still walk) and the poles make all the difference!

I wonder about stomach issues and MS. Past couple of months I have been very gaggy, and my stomach can turn on me at any moment. Also have had issues with heartburn.

I also have been told by my neurologist that I wait too long to see him. If I called him at every ache and pain – I would be broke. But is there a general rule of thumb on what symptoms and how long to “wait for it to go away?” I grew up in a home with a hypochondriac mother, and I don’t want to be that person, but then I don’t know if I suffer too long before I seek help. Where do you draw the line?

Anything on odd smells? For several weeks straight I notice I am actually breathing more shallow and even holding my breath now and then for a few seconds because (subconsciously?) I am smelling tobacco smoke as if someone were in the same room smoking and the smoke would get in my face. Fact is I don’t even know any smokers, not around any either. Yet, it is constant and I cannot get away from it no matter where I go, in the car, my children’s homes, even wearing my cpap mask. Is this psychological and have you heard of someone with a nose for “ghost smells?”

Piggybacking on Keith Thompson’s suggestion of “Could you talk about the effects of MS on cognitive thinking and is it possible that MS could cause a person issues with the mental aspects of working to the point of it not being possible to effective in the workforce.
What might one do to overcome the overwhelming issues in thinking and focusing daily.’
What about when you tell people that MS is impacting your cognitive function, and you give an example, and they say “oh, that happens to me all the time…”?
I was dx @ age 50, so many people tell me it’s not MS, it’s just normal effects of aging…BUT I KNOW IT’S NOT!

Hey Julie,

I’m not sure if I’ve just never seen it mentioned, but I’m really wondering about MS and menopause.

I’m 50 and am still not seeing any signs of “the change” but I’m a little nervous wondering about the hormonal changes that accompany that grand time of life and MS.

Will they play together well or I wonder if it will increase my level of disability? I think this is cool that you’re asking for topics from fellow MS-ers. I appreciate your newsletter and consider you my top authority on-line regarding all things MS. Keep up the good work!

Still WAY more blessings than reasons to whine and grizzle!

Kim Hahn,
Jacksonville, Florida

Hello, I would like to know more about drugs to take for memory loss.
Thank you,
Cindy

I’m interested in learning about hearing loss in MS. Whenever I flare or am having a bad day, I swear my hearing is muffled.

I would like to learning about hearing loss and MS. I know its not a typical symptom but whenever I am having a down day, its like I am listening to the world as if underwater.

what is with this count of 400,000 people have MS? I was dx in 2001 and that was the same number. Everyone I knows knows somebody with MS.
EVERYONE. It absolutely must be more than 400,000. Why is that number repeated for the last decade?

MS and Agent Orange from Vietnam. I’m a daughter of a Vet and both my sister and I have MS. Thanks for all the info on this site. It has been a lot of help, especially 3 years ago when I was diagnosed.

I am responding to writer asking about mother and daughter both having MS. That is the case for me. Mother was diagnosed in 1980. Her MS is progressive. I was not diagnosed until 2006. I know lack of balance and falling occurred way before then. I was 30 (1975) when my ballet teacher suggested I take up something instead of ballet! I couldn’t look at instructor and follow directions. I had to be behind her. My attempts and my falls caused laughter in classmates. My bad falls started in 1963 when entering college a a freshman. My MS is Relapse/Remitting and I take Co-paxone shots. There is no medication for progressive MS and mother has been in a nursing home for over 3 years. She can’t walk or even sit up well. I have read that MS is not more likely to happen if one sibling or parent already has it. Have there been any studies about this?

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How often relapsing-remitting MS can progress into the next stages of MS?

No changes on MRI but still lesions from six months ago. Is it still possible to have ms without changes on MRI

No changes on MRI but still lesions from six months ago. Is it still possible to have ms without changes on MRI

a year ago my brother was danseuse with MS i was very sad when i find out then..surprise ..2 months later i found out i have Ms i still in denial i could not believe i have it my Dr put me on copaxone and i am afraid to take it cuz i was worry about the side effect is there any one on this therapy (copaxone) i have been told about gaining weight it it true you gain weight when you take copaxone
thank you

My daughter has MS and she complains of heartburn ,is this a symptom of MS? It is relieved by Gaviscon. She is 32 years old and has had MS for 7 years.

Could MS alter lab results regarding thyroid? I do not want to take radioactive iodine as a treatment for a diagnosis of hyperthyroid, as I do not have any symptoms of the condition aside from a high TSH. I believe MS could result in false positives on other health conditions. Any science with this assumption? Thanks for a great opportunity to learn, share, understand more about MS.

I am interested in whether there is a connection between Rheumatoid Arthritis and Multiple Sclerosis. I have had RA for 16 years and now my rheumy has sent me to a neurologist because I am displaying symptoms of MS, Syringomelia, or Devic disease aka Neuromyelitis optica. I am awaiting results of my MRIs (brain, thoracic spine, and sublumbal spine) to confirm which disease I have. It seems as though I am collecting auto-immune diseases because I was diagnosed with Graves disease at the age of 14, RA at the age of 26, and possibly MS at the age of 42.

Low Dose Naltrexone (LDN) and its use to treat MS. I along with many people I know nation wide across the USA and Canada have had great results with it. So many people are having fantastic changes to their MS that they are being able to do things they haven’t in a long time.

My neurologist, Dr John Rose. Head Neurologist at the University of Utah is the one who prescribes it to me. You could talk to him if you need a doctor to talk to dorectlyv about it he does the research to create new ms medicines do he will know everything about it.

. I want to know why the big pharmaceutical companies won’t back it up if it is actually helping people to walk again, instead of making people feel like they have the flu every week with avonex, and the other side effects with the other crab drugs, plus the deaths caused by Gilyena.

Conception is not clear so far I think. Details information is needed about MS topics.

I am interested in the relationship between the pain/itch from Postherpetic Neuralgia from Shingles and Multiple Sclerosis — how differentiated, treatment, etc. I would love to hear experiences. Thank you.