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Julie  Stachowiak, Ph.D.

Julie's List of Weird MS Symptoms and Phenomena

By December 7, 2010

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After months of posting questions asking you "Have you ever experienced X?" or "Does this sound familiar?" I have put all of these blogs into one big list for all of us to enjoy. Let me clarify - the most interesting and enjoyable part of these blogs is not found in what I originally wrote, but in the amazing number of responses to some of these questions I was almost too embarrassed to post.

I've included everything to date - from symptoms worsening during a lightning storm to relapses following airline travel. Many of us have wondered about one or more of these things at some point, but were either too shy to ask our neuros about them or went ahead and asked, only to be told, "no way."

So take a look at the list we have put together as a team. Add some responses to the comments sections of the blogs that resonate with you. And, please, if there are any questions like this that you would like to ask our little community here, post them in the comments section below, and I will give them some airtime in a new blog. You never know who might be sitting somewhere in the world wondering about just the same thing as you are...

Read the full list: Weird MS Symptoms and Phenomena

Comments
December 8, 2010 at 1:59 pm
(1) Carolyn Richardson says:

Since 1976 I’ve “run the gamut” of symptoms, but one that irritates/bugs me is my feet feeling like I’ve got wet socks. Yuck!

December 8, 2010 at 3:29 pm
(2) Braingifts says:

HOT, COLD FEET AND FEET THAT HAVE UNUSUAL SENSATIONS

Everyone one of us is different, depending upon our medications and even those without medications have to be attentive to their bodies response to changes in weather patterns.

My feet are cold all year round, so I remedy the problem by wearing socks (of course changing them once a day. For Hot feet a lukewarm soaking does wonders. And for those on no meds and those on meds, Yoga is a great…help…Try iT

December 8, 2010 at 6:32 pm
(3) Tom McHugh says:

Thanks Julie,

My question goes out to anyone that has problems with the cold. Does anyone have the name of a product/gloves that will keep my hands warm in Chicago along with any other cold area? When my hands get cold they are very very painfull and feel like they are on fire.
Thanks
Tom

December 8, 2010 at 7:07 pm
(4) Troy says:
December 8, 2010 at 7:11 pm
(5) Ana says:

I just found this VERY interesting information, and I would like to share it with you and also know if you have more info about it!

Researchers Find Possible MS Cause and New Treatment

http://www.suite101.com/content/researchers-find-possible-ms-cause-and-new-treatment-a313549

December 8, 2010 at 7:18 pm
(6) Ana says:

here is another eye opening one!!!

http://www.news24.com/SciTech/News/Possible-MS-cure-found-20101206

I’ll keep my fingers cross~!

December 9, 2010 at 4:06 am
(7) Hilary says:

I have taken stem-cell capsules. First three weeks it was truly amazing. I had endless energy and could accomplish a good days work without any trouble. Standing was so much easier. I really thought I had found the magic capsule. Sorry to say after three weeks I slowly slipped back and fatigue set in. I stopped the capsules after three months. Felt it was a fair trial.
I was dx in 1992 and am now 64 yr. old. I take no medication only 1 Vit. D3 each day. Eat a good diet. No smoking or alcohol. Cannot walk far without a wheel-chair.

December 9, 2010 at 2:41 pm
(8) Donna says:

I would like to know if my back pain is due to ms. It goes from the rib cage done to just below the waist and sometimes affects my legs.

December 9, 2010 at 8:32 pm
(9) Sebastien Cyr says:

I did get 2 relapses after a long flight.

The first one was the fist real attack when I came back from Japan.

The second one was when I went to Australia.

S.Cyr

Montreal, Canada

December 10, 2010 at 6:56 pm
(10) Okie Katt says:

Thanks for the opportunity Julie;
Ok, I was diagnosed 8/1987 and have been very fortunate in that I have had few occurrences other than the “dreaded” heat and headaches or balance issues + a few hugs in the past few years.
My issue it that during EXTREME STRESS and I use all capitals because it is stress from a 15 year old staying with us.
I have had the odd response that my body is pulling up and inwards to a fetal position with arms locked to fists by chin.
I do take Zanaflex for spasticity issues and it requires 2-3 of these to calm the body down.
I have had 5 of these in the past 3 months and prior to that nothing of the sort.
My Neurologist ordered up new MRI’s (Brain & C-spine) but there wasn’t anything significant.
I would appreciate any incite/advise.
Thanks,

December 31, 2010 at 2:42 am
(11) Jennie says:

Hi Julie and everyone

Following the recent prolonged extreme cold weather here in the UK I feel I should comment on some of my “new” symptoms to see if anyone else has experienced the same thing. Is this the flip-side to heat or rather, humidity intollerance?

As soon as I stepped outside the usual pins and needles in my hands and feet got a lot worse then spread all the way up my arms and legs until they felt like they were on fire and my normal daily pain level increased tenfold. The only way to ease it was to stay indoors and make sure I kept warm.

On the plus side my normal inability to sense temperature meant I could stand practically barefoot in the snow with no gloves on and build a snowman with my daughters without feeling a thing LOL

March 23, 2011 at 11:50 pm
(12) Kimberly says:

My sweats happen throughout the day let alone at night, the one foot sticking out of the covers helps me to sleep, but what about during the day? I’ve been outside in -40*C weather wearing only a thin coat and a sweater and feel no cold, I thought maybe I was going through menopause because the women in my family started theirs early but I’m only 38. Does anyone else suffer sweating throughout the day, (my neurologist just laughs at me and I started to think I was going crazy until I read this article). Thank you for the article, now I know I’m not crazy!

January 27, 2012 at 4:03 am
(13) Heather says:

I’ve been diagnosed with ms for a little over 1 1/2 years and have been dealing with a weird symptom for maybe a year now. I will get what we’ve named my “nightly fevers”, where I will feel like I’m runnimg a fever, but only some parts of me. An example would be my cheecks and forehead will feel like they’re on fire but my neck and nose will be cool to touch. This mainly happens in the evening, starting around 6 or 7, lasting until maybe 10 or 11, sometimes later. It started one day in the winter when I was at home and I was watching tv. Since ms, I’ve been uber sensetive to heat and it felt like I was sitting near a bonfire. Over maybe an hour or so, I got so hot it was like a heat stroke. The temperature of the room wasn’t hot at all and the fire wasn’t going. I went out and sat out on our deck swing in the freezing temp just to cool off. Anyway this weird symptom has been happening since, and none of my doctors knows why or even really what it is.l, though one of my doctors said it was autonomic dysfunction. That, however, to my understanding is one of those lables meaning they really don’t know what it is. I don’t know. Anyone else heard of it?

January 29, 2012 at 10:18 am
(14) Renee says:

Troy…..In answer to your question about the “stemcelsfor hope” website. I talked to my neuro,,,he said there have been many successes but he is not a fan of these clinics all being off-shore. Suggested waiting.

February 8, 2012 at 12:44 am
(15) Mary Krivanek says:

Heather – I too get what seems to be a fever, usually comes in evenings in my cheeks, ears and neck, sometimes just one side or the other; while the rest of my body will be cold or regular. My doctors don’t know what it is either

For Okie Katt – I also get bad spasticity in neck, shoulders, legs, hands, and feet and take zanaflex for this. This is my main symptom and it doesn’t go away for me but stress definitely makes it worse!! Also, I find to much use of a certain limb or illness will cause it to come on stronger. The docs didn’t know what it was at first saying it was arthritis but that came out negative so I switched neurologists and they found it. Horrible pain it causes, my hands would curl up and I couldn’t put my shoulders down, but the zanaflex, with a antiinflammitory pain med helped alot and massages and a heating pad.

April 17, 2012 at 1:44 pm
(16) Julie says:

Hi,

I’m new to this. I have been suffering from extreme leg pain for many months and underwent several tests. Last week I could hardly move the pain was so bad. I have a constant fog, fatigue/ exhaustion where I just want to lay my head down and sleep. My legs and feet are constantly cold, like ice to the touch. Recently the weather has begun heating up and with that I am constantly waking up hot, sweaty, and then start getting chills, and then get really hot. I am having an MRI of the brain and spine this week and I am scared if the scans show MS how will I manage this on top of type 1 diabetes? I am scared, overwhelmed and in pain. I don’t know what to think. Thanks for listening.

Praying for answers-
Julie

June 26, 2012 at 7:04 pm
(17) Claudia R. says:

I am 66 years old and quite active until recently. I have all the symptoms you all have with MS, only mine came along during chemo therapy for breast cancer. It seems that Taxotere damaged the nerve endings and now the doc says that I have peripheral neuropathy caused by the drug. My symptoms are the same as MS. I am told that my high blood sugar is part of the problem. It has been one year since the end of my chemo therapy, but my problems are becoming more severe, trouble balancing, bad sweats 24/7, loss of full function of legs, etc. I am wondering if this is actually MS or will develope into MS…or if there is some link since both diseases involve the immune system.

July 28, 2012 at 2:25 am
(18) Teresa says:

Thank you for sharing information on sweating. I sweat from my head, sometimes just sitting at my desk I will start to sweat from my head only and it lasts a few minutes. My hair is soaked and sweat has run down my face and neck. At the slightest exercise or moving the sweat just pours off of me. It is quite embarrassing. Are there any cures or treatments other than Botox I just can’t bring myself to inject prison into my face.
Thanks

August 8, 2012 at 7:35 pm
(19) Jen says:

I can remember as early as 9 having mild symptoms of ms. I remember having to go pee so bad instantly that before I could get to the bathroom some would inevitably leak out. I never had any issues with wetting the bed or any other potty training problems, and it only happened for A few months then stopped, urinary Urgency it is something that has kept coming and going throughout my life. Also urinary hesintcy on and off where I just cannot go, I have to push as hard as I did to push out my babies, I stop pushing and the flow stops. Vertigo where my vision goes out after room spins I fall or have to drop slowly to the ground or bed. Shooting pain in left leg and hip from foot to lower bac. Clumsiness when I walk, I kick my own feet and the ground. Trip over the tiniest differences in heights of the floor. Hands and legs feel slow heavy almost frozen and lock up in varying different ways. Pins and needles burning itching in feet. Can’t remember words or stories or names people entirely. Get super upset and freak out over small things. Reaching for things and knocking them over. Electrical sensations up and down spine. Depression anxiety slurred speach swallowing difficulties. Voice lower hearing less. Probably more I can’t remember now
Oh spasticity, where my muscles in my legs mostly but arms too. Weakness in arms and legs like just have to sit and put arms down all the way. Pain in joints especially knees, they feel tight and sore. And some things that come up as a result of other symptoms are like insecurity of who would wanna stay with a messed up person and depression because of changing abilities. Oh and tremors in arms and legs, and random jerking muscles. all symptoms of ms. My grandma has it. She has barely been able to move the last ten years and in a wheelchair for twenty years before that. I’m super scared to go do all the tests but this stuff is getting so intense I can’t ignore it or pretend it is all in my head

September 30, 2013 at 7:19 pm
(20) meaghan says:

I have a weird symptom to add: when I get very upset during a relapse, I actually faint…not just dizzy, I pass out cold. ANother one is an Ice Pick headache

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