Hello all of you, I introduced my self earlier, this is my first post, I could not find a correct thread, so I opened a new one. Hope fpr some help, which I am sure all you good people can give me.
I have for a long time had all different symptoms, 2 - 3 years. Everything is getting worse and more severe.
I have been diagnosed with polyneuropathy, sensory motor. and small fiber neuropathy as well as autonomic neuropathy as was with the positive sweat test. I also have positive urodynamic test for neurogenic bladder, and must take meds for that( that is actually getting much worse lately, I should see my neurologist) I had gastric enptying test that diagnosed me with gastrophoresis. So we know there is autonomic neuropathy.
I had bad spasm and cramps of legs about 2 years ago, but it went away. Now it has come back, every day and night. The cramps and spasm is now also in my arms, hands, wrists, and fingers,

I have terrible parashesia of arms that eventually leaves them numb and weak. I have pins and needles, electrical current coming down arms.
I have balance problems, I have to hold on to furnitures sometimes around in my house. I stumble,but I have not fallen.

I have a special feeling inside my torso that I have been telling so many neurologists, and I have a feeling they do not know what I am talking about. And they end up saying I am am anxious. ( of course I will be after all of this!!)
The feeling is like this: It feel like a vibratory system all over. I can feel it inside, but it can not bee seen or felt by others, therefor doctors document in theyr noter " subjective" ----
When I sit in a chair or sofa, it feels as if there is an eartquake under, if feels like the chair is vibrating, and sometimes when I am just standing somewhere, I can feel the vibrations under my feet.
It get worse if I am realy tired.
I have had problems with words finding, and especially remembering names. But otherwise, I am fully psychological intact as they say. I can be pretty sharp and quick sometimes.
I used to get very fatigued, but that has greatly improved.

I have been diagnosed with vasculitis, and I am being treated with imunoisupressive drugs and periods of steroid.

I had a rel bad time a couple of months ago, and my rheumatologist put me on a Prednisone course. 40 mg x 3, 30 mg x 3 , then tapering down. After about 2 days I felt like a differen person, but by the time I tapered down to 30 I felt real bad again

The symptoms are severe neuropatic pain and parasthesia. So the doctor kept me on 30 mg daily foe anotheer 2 -3 weeks, and then taperning down. It has been about 6 8 weeks now, and I am almost finished tapering down I am down to 5 mg daily.
But I feel real baad. I have parasstesia of arms and legs, and I have now breathing problems, and tightness in chest.

Because I responded so well to the Steroid, make me realize that ther reslly is an inflamation going on in my body, and when it was stopped, sympotoms come back again

2 days ago, I went to a cardiologist, explained the chest tight ness. He said it is not cardiac related( which is good!!) But he did give me a small dose of Norvasc, just to try there could be micro vessels aroun heart that was , it is like acting as anti agina. but he said all my large vessels are good( I had a cardiac cath earlier).

I saw my pulmonologist a while ago ( but I did not have this tightnes then, so perhaps I should go back) My Ct of chest was ok except 2 small nodules that we are keeping an eyw on)


Let me explain the chest tightness: It feels like a squeeze front and back, sometimes a little upp, some times on the lower chest, but most of the time the whole chest and torso!!!!! and it seems to be always there. It gets worse in afternoon It squezesright under the clavicle, and right down to bottom of chest
Sometimes I can not talk too much, makes me short of breath

It could also be worsening of my vasculitis.

But I had a MRI of my head 2 years ago, and it stated I had lesions demyelinating that likks like MS.

So they have been doing repeat MRI, but no new lesions

I have finally talked my neurologist in to doing a spinal tap!!!Yeppee!! I am having it done first week of next month

Perhaps we can fing out what is going on?




Now, my question is..
Could all this be MS??? I am sick and tired of it allk. they can not find a diagnosis