Diagnosing multiple sclerosis (MS) is notoriously difficult. There are many vague symptoms and the tests for MS provide "clues," rather than answers. When I was finally diagnosed, my neurologist told me that I had probably been living with MS for 20 years. Indeed, during that time, I had been seen by: two neurologists, a rheumatologist, an orthopedist, two psychiatrists, an allergy specialist, an infectious disease doctor and four general practitioners -– all for specific symptoms that I now know were linked to my MS. What about you? What was your saga before finally getting an MS diagnosis?
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- My name is Maria and I suffer from Multiple Scleroscis. Multiple Scleroscis is a disease in the nervous system. The pain is mostly around the back it hurts me a lot in my back. I try to excersice but it hurts more I have cried two or three times. I get chubbier and I want to excersice and lose the weight but it hurts me too much too move around I cant do very many things. I don’t know how I got multiple Scleroscis, the doctors tell me they dont know either. The doctors also told me there is no cure for it they also don’t know how to prevent it. Multiple Scleroscis attacks the nervous system. I try to stay healthy besides excersing I eat salads, fruits. I drink diet things. MS is short for Multiple Sclerolis. There are medicines that I take but they don’t help very much. MS is a serious disease that affects the nerves in various parts of the body. There is no cure for Multiple Sclerolis and the doctors don’t know what causes it. It damages the nervous system and causes bad pain in the
- —Guest Maria
MS Out of the Dark Into the Light
- I had been sick for years. Balance issues, dizzy spells, fatigue overall just feeling awful. I remember thinking when I was in my 40's am I ever going to feel okay? Well, 16 years later I collapsed at work with tremors upon arriving at the hospital I became paralyzed in my limbs. The ER doctor wanted MRI. I left hospital went back 2 weeks later had MRI done. Regular Dr. said "Are you a smoker and do you have high blood pressure?" I said, "Please send me to a neurologist" After years of doctor after doctor and the last one viewing MRI I finally saw the nueroglogist. Thank God. He showed me the lesions and scars on my brain. He told me I had MS. I started shots right away and I am already feeling a little better. The journey in the darkness was not knowing what was wrong. Finding out I have MS is now the journey into the light because at least I know what and how to combat it.
- Much like the person above ,I was told yesterday that what was ADEM is now early stage of MS.A new area of inflammation on Last month's MRI scan confirms this.I was in shock and very scared,only slightly better today thanks to my 2 children giving me a good talking to. Still got to tell my sisters and am off to visit the youngest one in Cyprus soon, so need to warn her that heat may make symptoms a little worse! I hate to feel scared but can't help it.I am trying to smile and get on with life but it's not always easy.
- —Guest Ann Owen
- I was one of those people that never went to doctors unless it was an emergency. Not even when I started walking like Dr Frankenstien's assistant Igor. I finally went to a Dr. who upon seeing the way I walked, sent me for an MRI which suggested MS. I had to see a Neurologist who requested a second MRI which sealed my fate. I had MS. I did not take this news very well and am still coming to terms with my diagnosis. But I will not be defeated. I have to live with this. It's just that I was never a fragile type of person and I find myself weak and afraid to fall, which has happend on more than one occasion. Let's not even tallk about the weak bladder... ughhhhh Well... Goodbye Maxi Pads and Hello Depends.... Life goes on no matter what!
first time experience
- Im 29 and i just recently got diagnosed with ms, never had any other indications or symptoms ever in my lifetime, and the crazy part is they did every test and every test
came back negative except the mri which showed i had white spots on my brain the only thing to lead them to me having ms, should i get a second opinion
- —Guest sadena
- I have all the symptoms of M.S and cannot get a doctor to understand what is going on I cant walk,my vision,my gait and balance now I am seizing my hands are tingling numbness everywhere especially right side,UTI pls tell my if I am missing something I asked for a spinal tap I also have COPD im 48 dont smoke I am not getting what or why someone is not listening to me.
- —Guest mitzi
- I was diagnosed a couple weeks ago; I'm 31. Was admitted to hospital with severe vertigo, nausea/vomiting, double vision. Had CT scan and MRI and released, sent to Neuro for follow up 2 weeks later. She examined me and said there were 3 lesions on the MRI but none explained my symptoms; chalked it up to some kind of virus or inner ear problem and told me she would do a follow up MRI and see me annually for awhile, but to go back to life as usual. I was so relieved! Next day we set off on a camping trip - I woke up in my tent at 3 am about to vomit.The vertigo and other symptoms were back worse than before. Was driven home 8 hrs like this, spent 5 days in hospital unable to walk or see properly. Another MRI showed a lesion on my brain stem. Prednisone helped greatly and I am feeling normal again. Current diagnosis is Clinically Isolated Syndrome, but they said it is going to be RRMS (87% chance). Trying to be optimistic, and mostly I am, but also terrified of what the future holds.
- —Guest L_Joanne
- I was going through diagnoses of the unknown cause of my symptoms since 2007. Over the years I noticed small things, pinched nerves, "Shivers" running down my spine, exhaustion in the mornings and eye twitch. After the doctor sent me for physiotherapy and sleep test, they tested me for lime disease (Negative) and then they did the MRI. I haven't had an episode so It was very hard to diagnose. Mobility was very good, but the biggest complaint I had was the winded feeling I would get after basketball or my martial arts. Then I got sick when infected with a virus, was in the hospital for a week being tested and medicated with the same medication they gave to people infected with Anthrax. A spinal tap was done and that confirmed I had my first episode the night before when I couldn't walk straight coming home from a wedding. I had "lazy foot", where you loose coordination of your foot and it drags. Anyway, using Capaxone and many of the symptoms have been releaved. Hate shots :(
- —Guest Patrick
The worst Post Honeymoon Ever
- I was remarried in 96, an upon returning home from Paris, I became quite ill, weak, could not walk without help. My Dr. began to run test everything negative, after seeing every specialist in town, It was thought that I might have infection, an appointment was scheduled and the Dr. did a neurological examine and told my Dr. that MS was suspected, then came the MRI and it was conclusive that MS was the culprit. It also showed that I had, had MS for at least 10 years prior. Maybe that's why those door's kept stepping out in front of me banging my shoulder's. You think? It was also said that I probably would not be still walking in five years...It's 2012 and I am still going strong. What can you do? As for myself I have made my life's mission to never allow MS to take control of my life, whether that means new coping strategies, to be able to continue as normal a life style as I enjoyed before MS. I never forget that MS is not a one day battle, but it is a life time journey.
- —Guest Shirley Tucker
In your shoes
- I am 27 and have had RRMS. I am currently on copaxone, but have had a steady progression of certain symptoms since my diagnosis at 25. I have decided I will do all that I can to stave off long term neural degeneration and comfort in the knowledge I am taking the fewest risks possible.
Therefore I have undertaken the best bet diet; as well as maintaining less than 15grams saturated fat per day, as per Dr. Swanks recommendation. As well, I swim, lift weights and do yoga. I keep my protein at a reasonable level by eating ~60 oz of green smoothie and ~60oz of fruit smoothie daily(no added sugar). I recently ordered Terry Wahls book and would like to integrate the diets. I too, am concerned about getting adequate nutrition without the protein. I do believe a plant food diet is ideal: however, it will be tricky given the obvious restrictions.
Has anyone else tried to combine these two diets? Specific nutritional suggestions would be amazing. Thank you
- —Guest Asmitty
Still in shock
- One day in May 2000 my left big toe would not move. After an MRI of the brain, I was told that I had brain cancer which had likely spread from somewhere else in my body. Thank God the biopsy was negative. After steroids my toe began working again & I was sent home with no diagnosis. One dr said it could be MS, which I quickly dismissed. 11 years later in Oct 2011, a viral infection turned into difficulty swallowing, double vision, no balance, tingling & the left side of my head was numb. Another MRI was done & I was diagnosed with MMRS. 9 weeks in the hospital & a lot of steroids later, I still have not returned to work . The symptoms are better, but after 3 months they have not resolved. I am afraid I am left with these permanently. I am going to try to return to work in a few weeks, but I have my doubts about whether I'll be able to handle the fatigue & stress. I have been taking Avonex for 6 wks & pray that it will be a long time before I have another exacerbation.
- —Guest Cathy
The Doctor Makes The Difference
- I started having all types of strange symptoms, from numbness to optic neuritis. One morning I woke up and attempted to hang my legs over the side of the bed. I raised up to the sitting position and just kept going. I landed on the floor and rolled into the wall. My head leaving a small hole. After two years of seeing the same Dr., he finally gave me the diagnose of MS in 91. He came in the room and said you have MS, turned around walked out. I sat there for forty five minutes waiting for him to come back, the receptionist came in and asked why I was still there. I told her I was waiting for the Dr to come back in. She told me he left about a half hour ago. Now have a new Dr.
It was almost the coldest diagnose I ever had. I was diagnosed with lung cancer in 93. The Dr told me he would treat the cancer as out patient with small dose of chemo. I asked then what, he rolled his stool up close so his face was in mine and he said you die. That was long time ago. again new Dr.
- OK I am so clutzy I have typed this 3 times keep hitting wrong button and losing it so short and sour it is: neurologist #1 sent me for mri's brain and spine was told of my blurry vision, balance prob. speaking prob, numbness etc.. brain lessions present. "Not MS you're too old" Neurosugeon agreed to see me and after exam and viewing of mri's stated you have ms. but being a surgeon he suggested I go to a new neurologist. So I did. Neurologist #2 after I literally stumbled through the balance portion of the exam and he witnessed my very hyperreflexes & also viewed my mri's. He actually stated "I see no signs of MS but you do have sleep apnea" why? my throat was red! I asked what about my hyperactive reflexes? that can be normal. But a red throat I guess is without a doubt sleep apnea! I have written to the local ms society chapter hoping to find an ms specialist. If anyone has any ideas to offer my email address is firstname.lastname@example.org
- —Guest amy
trying to live with ms
- I was told I had ms four years ago. I had been to the hospital several times with arms and legs going numb. They couldn't figure out what was wrong with me. I woke up with the whole left side of my head completely numb. It scared the hell out of me. I put off going to the dr because I didn't have insurance yet. I finally went in and had a mri done, that resulted in a spinal tap. I was told I had rrms. I was at a loss. I knew there was a problem but never dreamed it was ms. I have gone down hill since. I have been on several types of shots and still have had no relief. I finally got the government to give me disability. I have lost everything due to the medical cost. I live in a rv after the loss of my house, car just everything. My family have turned their backs on me because it is just more then they are willing to commit to. Depression has taken me over. I have bi polar which is a evil combination to the ms.
- —Guest coleene
Multipe Sclerosis and Hearing Problems
- I stopped taking Rebif almost two months ago and am now considering other medications. The hearing in my right ear improved once I was off the medication! It is amazing how much the medication can cause what you might think is a MS symptom.
- —Guest JU