Evaluated for MS

[rumpled]

I am being evaluated for MS. My PCP is convinced that I do have it (strangely!) but my neurologist is not and it putting things up to anxiety but I am not on anti-depressants or anti-anxiety meds, nor do I need them. I do have a long and complex medical history so it makes having anything new a real pain (like I need another disorder... no.).

I have wild spasms mostly in my face. For the most part, it is limited to one side of the body and they are painful so they cannot really be tics. The eye spasms are so severe they bounce my eyesight and it can last hours or days to a week. It was just my face, then now my shoulder, then my head now my leg. Now it is spread to the other side of my face too. It may be one area or multiple areas and seems to be progressing. I lost reflexes on one side. The neuro says he can draw a line down my face and midline where things change but still thinks this is okay. When this happens it messes with how I can think, walk or function - it brings my fatigue to higher levels and I have normal fatigue with my existing disorders (panhypopituitary, no adrenals, myasthenia gravis of some sort,).

I have MRIs normally to watch the existing tumor in my head and they are negative for any MS. I had a spinal x-ray and it said I have degeneration but need an MRI for further study. I had previous MRIs that showed some mild stenosis but I don't know if it would cause these symptoms. I had some blood work that was negative. Lyme was ruled out. I am on high dose steroids for my disorder so it rather masks some things.

Thoughts?

[rumpled]

Thanks for the reply. I will look for a specialist. I have had a 1mm slice MRI in combo with a CT a few years back when they were looking for something on my clivus. It was a stealth MRI.  The last MRI was 5mm slices so it was pretty vague imho but the script said eval for MS.

AT least I know others have been in same boat. Thanks.

[HVAC]

Neurologists specialize and not all of them are good at diagnosing MS. I went to one who said I definitely did not have MS when 5 other neurologists said I probably did have MS.You might try a MS Specialist.

The way Neurologists think is it is not MS until all other mimics have been ruled out and you meet something called the McDonald Criteria. They also like to evaluate people every six months for some time. All my MRIs showed MS and my other tests showed negative to all other illnesses. It still took two years to get a diagnosis from a neurologist. Insurance companies say the diagnosis has to come from a neurologist.

MRIs for MS are different than other MRIs. There are more slices or views. They use special software. Also the MRI is done with and with out contrast.

Anxiety is the catch phrase for I do not know what is wrong. My PCP sent me to the neurologist and later said it was anxiety. I asked her how can anxiety only effect half of my body? That is when she sent me to a MS Specialist.There are few MS Specialist so do not be surprised if it takes months for an appointment. In our area it can take 3-11 months.

Alex