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Some words of wisdom please.

Hello. I often come in here to read other people’s posts, particularly those that touch on similar notes to my own situation. I’ve often been comforted by people’s thoughts and experiences and on this occasion thought I’d post.

I’ve been having neurological symptoms for 3 or 4 years. Primarily sensory… numbness, burning and pain, persistent twitching and flu like symptoms, sore muscles after very little exertion. I’ve had periods of severe leg pain that have left me wondering what the hell im to do. Ive had periods of feeling well with very little happening symptom wise and in fact have been ok for the past few months. Last night I became aware of my left thigh burning and could visibly see the muscles rippling under the skin. Today I have sensory symptoms my entire left side with the left side of my face feeling like I’ve left the dentist. I should say these are all symptoms I’ve experienced before and they are always on my left side. However, today it’s making me feel emotionally shitty and really scared. I’m getting pulsing pains in my arms and stabbing pains in my fingers.

Ive seen a few neurologists over the years. Started with an mri which was normal. I eventually got a referral to an ms specialist, having seen a couple of generic neurologists (I don’t in any way mean that in a bad way). My gp was concerned enough about my symptoms to do a second referral. Specialist initially said my symptoms were suggestive of an ms relapse. I had a second mri and a lumbar puncture and a VEP test and all came back normal. Various other things have been ruled out along the way, including vitamin deficiencies and Lyme disease. I have filmed a few of my symptoms over the past few months, thigh muscles contracting for over an hour for example. I’m conscious that I sound really moany but this is a shout out to anyone in my position who has had all the tests come back clear. What have you done next? What has your neuro suggested? I’ve got an appointment with my ms specialist in two weeks and how do I get across to him how bloody worried I am without him thinking I’m a crazy neurotic anxious freak whose tests have come back clear. I’m going to request another mri, especially in light of how I feel right this second. I’m totally open to the idea that it’s not ms but I know he initially believed it was. The symptoms say yes, the presentation says yes, the family history says yes but to this point the tests say no. Is there anyone here in my situation or who has been previously who can share any words of wisdom? I have up to this point not let any of this massively interfere with daily life. I work, rest and play and have largely kept all this to myself. I feel now though that my ability to function normally is becoming more difficult and tiresome, in the emotional sense and I have to try and find some understanding of all this. Here’s hoping…

hello

i suggest you tell the neuro the things you wrote in the last paragraph.

you are a whole person, emotional issues rank as high as physical symptoms.

good luck

There are other disorders/diseases that share many symptoms with MS.

You could have a look at What Is FND - FND Hope International This is Functional Neurological Disorder, I think many people test3d for MS with clear test results could potentially have FND.

Or Antiphospholipid Syndrome, aka APS or Hughes Syndrome or Sticky Blood Syndrome, see Antiphospholipid syndrome (APS) - Symptoms - NHS Again, it shares symptoms with MS.

In the absence of clinical data proving the existence of demyelinating lesions, particularly MRI showing MS lesions, the neurologist cannot diagnose MS. They are bound by the McDonald Criteria - https://www.mstrust.org.uk/a-z/mcdonald-criteria - which needs clinical data for MS to be diagnosed.

You are right to keep your neurologist looking for answers, in particular since he was certain initially that you had MS. But it does sound like you don’t have it. But you won’t sound like a crazy neurotic anxious freak for wanting an answer to why you still have ongoing symptoms.

Sue