Multiple Sclerosis Support Group

Saw primary care dr and he suspected MS due to my symptoms of blind spot in eye that comes and goes, tingling and limbs falling asleep, tingling toes upon awakening, pain though out my body, headaches, dizziness and lightheadness that comes and goes, vibration in foot, memory problems, constantly drop things, loss of balance, muscle weakness that comes and goes (waddle like a duck sometimes, and sometimes its in my buttocks, legs, hands and fingers), slow moving hands, muscle cramps and tight calves, weird sensations in my legs, muscle twitching (once for 3 days by finger just moved on its own), blurry visions that comes and goes, slurred speech that comes and goes.

He ordered MRI of head and I saw neuroligist. MRI was perfect and he said no MS. I typed up symptoms and he looked real quick and immediately told me that since I am a stay at hoome mom I am tired and stressed. My jaw dropped! He agreed to do MRI of neck and spine. Spine came out perfect too. No lessions there either. Neck have herniated disk and arthitic bone spur. I was surprised but I was having neck problems. He said I have no explanations for your symptoms but lets focus on your neck. Again totally shocked! He did an EMG test and that was normal as well as a quick 3 second walk heel to toe test and stand with eyes closed for 3 seconds and they were all fine and a reflex test that was fine too.

Had tests for thyroid, diabetes, cholesterold, vit B, lyme disease (2), lupus and all negative. Saw rheumy and he said if it was Fibromyalgia it wouldnt cause neurological symptoms. Can all the nurological testing be fine and still have MS? Not that I want MS but i want answeres as to why I have these symtpoms. I am 42 and I do realize its uncommon to get MS after 40. The loss of balance when I get up from a chair or turn around or stand still is very embarrasing as is the slurred speech that I get sometimes. I feel I need to tell people why but have no explanation.

Post edited by: co22, at: 12/30/2011 05:23 AM

Neurologist also said 75% of his MS patients have the same symptoms I have. Whatever that means...

You do seem to have many symptoms that are confusing. I have had Myasthenia Gravis for 17 yrs and all my tests but 1 came back negative. The Tensilon test was positive. Tensilon is the IV form of the drug I now take in pill form. It was very odd that my EMGs were negative but my neuro gave the diagnosis because of the one pos. test, my symptoms and the medication works. This medication is primarily for MG but works for a short while on other neuro diseases like ALS otherwise there is no other disease it affects.

I hope they can find a cause and treatment for you soon. And DON'T put any value in the dr. who said you were just "tired and stressed". I had dr's tell me it was all in my head.

Praying for diagnosis soon.

Penny

WOW I'm reading this thread and I am exactly like you only I'm 48 and I've been told that I have had Fibro since I was 14 yrs old.

However, many, many strange new symptoms that are just crazy like bruising up and down my spine and I'm talking about heavy bruising (purple horrible stuff) also on my right leg where blood vessels have been broken. I have to go in for another MRI (I have had quite a few in the past for other problems). I was also suffering with ocular migraines which freaked me out.

I'll be sure to keep watching this thread as I think I'm in the same boat as you are.

Good luck and lots and lots of prayers coming your way. I feel your pain. Hang in there.

Your bruising sounds unusual and not associated with MG. There are so many symptoms and odd diseases out there that it is hard to tell sometimes.

I hope they find the cause for you soon.

Penny

I guess I'll find out pretty soon, whatever it is.

Hey C022 - MS hits when young but there is also a lot of people who have it but don't develop symptoms until late in life - as well, it doesn't show up on objective testing until late in life too...I am proof of that. At 38 I started just having weird stuff hitting me over and over, but no one could tag it with a specific disease - and that's what's tough because you can't get treatment until then.

Don't blow off the Fibro. Dx...as it is a start AND it is more and more connected to CNS issues - and IS a CNS problem according to JHU and other well known research centers. While most Docs will say it is a made-up disorder so that they can get you out of their office, it is real enough for social security to recognize it. SS won't disable you for it, but when combined with another disorder, they will - hence IT IS REAL. My own view on this is to be patient and sooner or later the symptoms and testing will be so blatant that any idiot can Dx or say there's something going on here. Do NOT stay with a doctor who will try to explain away tests that come back positive...their ego gets in the way after all those years of being wrong. Move on to others.

My own experience took years of frustration to work through, but I kept records - so that you have a baseline to have. The MRIs are important so that when you develop another symptom or just get another done later, if there is ANY change, you have the baseline. As well, you may want to compare your symptoms with others, but each case of MS is different. A relative of mine was diagnosed right away, but basically had nothing that was debilitating...I had all sorts of stuff keeping me from hardly moving and couldn't buy even a small difference in testing - despite surgeries and tumors, neuropathy, pain (God, lots of it and everywhere and almost every type). But then one test showed something small...then Johns Hopkins said their was an "Undifferentiated auto-immune condition" as well as Fibromylagia - still no big test. Then a 2nd MRI showing some microvascular changes, then...chest pain...then by speech started to slur - and my nuero said "don't worry about it!" I insisted on an MRI - this time, it came back with a full menu.

I had a friend DIE of a CNS disease that they were NEVER able to Dx...that's how little "they" know. Weight loss is a BIG symptom (one that I don't have)...he just wasted away - took years. Very sad.

Bottom Line: you know your body and hopefully you have a good support system (MD Junction has been invaluable to me - go to the Fibro. group and they may give you insight on how to "educate" your doctor and yourself). Be patient, because if it is as bad as you say, something will turn up eventually - sometimes an auto-immune can be like an ice burg - good luck.

co22 I have a lot of the same symptoms as yourself. Except that I have other issues as well like pupil that dont change and optic neuritis I have had the spinal tap and only came back with one protein band and not the required two thats needed for ms. My mri of brain says I have many small brain lesions nonspecific. So then I went to the Mayo clinic to get an opinion from an ms specialist and they said no but there is neurological issues. I have had a ton of test and so far they have come up with neuropathy paresthesias and small vessel disease of the brain and brain lesions. There are non in the cervical which is almost required. I have taken steroids a few times over the course of this project and they made me feel very good. But I have disabetes so this is very limited use for me.

The reason i end up going to the neurologist is cause I ask my primary care for a script for a wheelchair cause I can not walk any amount of distance and when I try I am down for the count. My entire spine is on fire I mean burning paind. I have vision issues as well that are affecting my eye sight on and off at times I can see good others I am in a total blur. My eye pressure is at 35-40 as we speak so in the next week i will be visiting my neurologist again to find answers. It takes a lot of time to figure out what the problem is.

I am almost convinced that I have ms but the doc must make that call. At the very least i have some serious neurological issues that cant be explained. Or at least up untill now it hasnt been explained. I have been walking around like a drunk for so many years that Im use to it. And I dont even drink !!!