Started 7 yrs back tingly foot felt light headed. Over the yrs legs ache wen I walk or stand too long but not weakness and I can exercise walk fine. My left arm aches wen I dry my hair so have to use my right. Had vertigo attack 5 yrs ago and now wen I lie flat and turn to the left my head feels wobbly. Get short shocks on my lower back wen I do too much usually cleaning as its my job. Recently noticed a small numb patch on my right leg below my knee. I feel fine in myself no fatigue just these weird symptoms. Brain MRI normal 5 yrs back brain/neck normal 1 yr back. Envoked potentials normal. Keeps saying its not ms. My symptoms seem conclusive to spinal lesions tho. Said dont need a spinal MRI as nerve tests R normal and apparently lumbar R not always accurate. What can I do?? Stuck :(
Oh I also had a period of getting mouth ulcers constantly!! Seeing a neurologist. I just dont want to give up until my spine has been looked at as it seems something is going on there. When the neurologist tells me things like U can't have ms with clear brain mri's know its wrong. Want to b prepared for my next appointment July as dont wanna b fobbed off that im ok wen I know im not!
If your neurologist is telling you you can't have MS without brain lesions, and won't order a c-spine/t-spine MRI, you need to find a new neurologist. It's that simple. Even if it turns out not to be MS, you don't want a neurologist that is this ignorant of a disease the effects 400,000 people in this country.
You are absolutely right to want your spine examined.
Thank U think as my envoked potential tests were normal she thinks that I hav to b ok! Didn't think those tests were 100% to a diagnosis anyway.To have a balance problem and normal brain neck eyes n ears is odd I know its my spine all my weird symptoms scream spinal prob!! Its just not normal to b dizzy with all sorts of weird sensations going on.
I understand what you mean when you say you know something is not right with your body and a doctor tells you what he sees in front of him (MRI or other diagnostic tests) says differently. I know it can be truly frustrating, but do know that some of your symptoms can be caused by other things such as: Vitamin B12 deficiency, compression of spine on a nerve, things like that. (There's more but my brain is not functional at this time to think of more).
My suggestion to you is to get a small notebook (or large) and begin writing down dates of when things occur. I know with myself, I tend to forget what happens to me if it goes away and I don't have it anymore. (I think that's common with a lot of people -- MS or not). Try to keep your notes short, for example, if you're feeling dizzy, weak, joint pain, etc. then just write that. This way you can recall things easier if someone were to ask you.
Your question is "MS or Not? What is your experience?" Well most here have a diagnosis of MS and some here do not (like myself). Some of us have neurological symptoms with unknown reasons and without explanation from our Doctors (primary or neurologists).
My question to you is, have you had bloodwork done and if so, what can you recall that your doctor ordered? Do you have the printed results? If not, I would call your MD's office and ask them to make copies from your chart and let them know you want to come and pick them up on a certain day or the next time you go to see your doctor, to request your laboratory tests and diagnostic tests reports that have been done. This is something you should keep in a folder. This way you can always find it.
I would speak to your primary doctor and tell him/her of your concerns and see if he/she would give you a referral (if your insurance company needs that) to another Neurologist and get looked at with a second pair of eyes.
One thing I do know is that people know their body and know what they used to do and know what they can't do now whether it is pain, sensory or motor deficits that impair their daily living activities.
Also, try not to "tell" the doctors what you think you have but allow them to investigate you and give short accurate answers.
My two cents for what it is worth is, have you been tested for Sjogren's syndrome? Mouth ulcers can be a manifestation of this. The other reason for them that springs to mind is low iron, but I presume this has been tested?
Thanks I live in the UK so they do moan about sending for sum tests as it costs NHS money. Just want my spine looking at then I will leave them alone n b forever confused. Had blood work done like b12 all normal :S
Perhaps a referral to a Rheumatologist could possibly be a solution to finding out what is going on with you?
You must be your own advocate because no one else will be. You have to take the reigns in your own health. I dont much care how they moan about releasing records, it is your right to have them, it is your health not theirs.
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