I'm new, but have been reading alot from this site. In answer to your question, Yes, All the time. Also feels like being weighted down, hard to move like trying to move quickly in water and haveing that resistance when trying to move. In both the arms and legs.And get very fatigued quickly. also feels like the arms are tied off with an atternicate, cutting off the blood supply and going numb. The balance and dizzieness is probably the worst part of it and for me it started that way very gradualy at first but also had a very sore neck and still do. Just blew it off at first, as muscle tension. Then the Dizzieness and balance got way worse especially with loud sounds, made me fall over. Lots of deep muscle and joint pain and lots of muscle spasams as well. If I close my eyes even while standing I'll fall over, makes showering a big challange.
I have experienced just about every symptom that goes along with this condition and it seems to be very fast in progression sense the balance got so bad I could no longer drive,O.K. drive safely anyway. Lost my vision a couple of times , but it always came back. But now I have this unexplained blurry vision, that seems to be gradually getting worse. I have gotten glasses twice and with Bi-foculs it just keeps getting worse. I have been seeing Many Neurologists and Have had many many tests over the last 4 plus years.
At this point I have no trust with the medical system at all, How do ya know what they are telling you is even right, how do ya know the tests were done correcly, and after all the B.S. Diagnosis that you were given during this whole process of Diagnosis that your even going to get the correct one. I have seen 12 differant Neurology Specialists, Every one wants to do there own tests and still have no real answers or as they put it, Diffinative Diagnosis. I have read something that really caught my eye on this site about Spinal MS.
I have had many MRI's with and W/O contrast, and yes they can go wrong, I have had Two deep veign Thromboses from them doing it incorrectly or by haveing a reaction to the contrast solution who knows. They never even tried to find out either way. They say I have lesions but are consistant with my age group. the cfs has a high level of protine and high red blood cell count but was dismissed as Haveing a tramatic lumbar puncture. They performed the Lumbar puncture Fluroscopy proceedure and never had to re-stab but did how ever got close to a nerve root and re-aimed the needle with sucess, not haveing to withdraw the needle.
Because the Neurologist feels it was a Tramatic puncture he refuses to test the Srum any further. He also told me no more testing will be done, No more MRI's, No more Evoked potentials , No more CT scans , No more anything. I guess I need to go else where. AGAIN , So far I have been to Two university Hospitals, Two V.A. Hospitals and Several Independant Neurologists. and alot of differant departments Like, ENT's and Otoneurologists, Neuro-optomoligists, who just can't explain or disclose what they even suspect this could be.Oh did I mention Neurophyscologists as well.
I don't even know why they were even involved, after doing thier tests they called me back with thier results and say, you could be very well haveing the problems you have described with the memory and difficuly with problem solving and remembering and retension of new information and difficulties with finding words but these tests are not designed to show that, I asked them then why did I even have to go through all those tests, I thought they were designed to help the neurologist determine the right Diagnosis. they replied, thats determined upon the presentation of your symptoms to your Neuro. Wow what a bunch of B.S. Just another way to dig in your pockets.
Sorry, had to vent a little. I have been doing alot of reasearch on my own and ran into the Spinal MS and talked about lesions being in the spinal area and in how it affects the balance and limb problems more so than lesions on or in the brain. During my long road to diagnosis they have only one CT scan done and one X-ray of my neck and spine.Could it be that they just over looked this or just decided it wouldn't be very detectable or detected in this manner ? Do I need to fire this guy and Seek a new Neuro ? My problem is that I feel like I had this for so long now and with the fact that this is getting so progressive,
that I may be in the Primary progressive stages with this, And from all I have learned about this phase there really isn't much they can do at this point, especially with the balance and dizzieness that are the most problamatic. The rest I can tollerate perty well, O.K. for the most part they do resolve to some degree and they do present them selfs more often and at the worst times. But if I just let it go with out treatment of any kind will this be life shortening due to other secondary problems like swollowing food or liquids, asperation during sleep?
From what I found about the asperation part of it during sleep, phnomiuma is more likely going to be the culperate.
And they really don't have much information about the ways they treat the more advance stage of MS, Maybe there really isn't much let out for the advanced stages to the general public, who knows.....