Is anyone else dealing with neuro disease without insurance?

[btfldisaster]

I ask this question without wanting to sound like I blame Dr's for their inability to figure out what is wrong with me.  I began having symptoms in 2007, traced back through my file at my GP's office at that time I had excellent insurance as I had all of my adult life. Unfortunately due to the economic problems in 2008 by 2009 when things were really getting bad my husband was laid off from the Commercial Construction - Project Manager position he had, and we have been uninsured since 2010.  I have been examined by 3 highly qualified neurologists, had MRI's, and a lumbar puncture all at my expense...each and every time I am told that "it looks like ms" or movement disorder such as parkinson's, but not one of the Dr's I have seen so far have enough "evidence" to satisfy the criteria for MS - so not only am I progressively getting worse, My GP has tested for all the autoimmune diseases that it could possibly be looking for the quick answer which is fine with me although nothing has come up..my spinal tap had one band, but no further evidence of MS= that Neurologist advised me to go to Mayo Clinic yeah right...firs of all I was airlifted because of suspected stroke..no stroke what was found follows: MRI Brain w/out contrast diffusion weighted: 2.3x1.6 T1 hypointense and t2 hyperintense focus right frontoparietal convexity slightly lobulated and smooth margins the lesion does not show any restricted diffusion, there is mild widening of the right prefrontal sulcus.  mildly low lying cerebral tonsils 4mm below foramin magnum.same report CSF density collection right periolandic cortex likely porencephalic cyst differential also includes arachnoid cyst or focal cystic encephalomalacia???   I was told that I did not have a stroke had an arachnoid cyst but not significant in size that they believed I had complicated migraines and said if I didn't improve within a week to go see a neurologist i developed a rash on my face and chest they gave me benadryl and sent me home. I was readmitted the next day to my local hospital with my face so swollen i could not open my eyes and my skin on face and upper chest bright red...no itching...the hospitalist admitted me because of the rash and the poos response to the meds the er had tried and that my head was bobbing, and my arms and legs were spastic, I had a bunch of Solu Medrol and went home with a walker two days later ...I went to a neuro as recommended who did an exam and suggested a spinal problem so he did a lumbar puncture came back with one band csf index 0.8, and albumin index>12.0 all else normal ...letter shortly followed from the neuro to get a vitamin D supplement as it was low, and get second opinion such as mayo clinic...I went to the Multiple Sclerosis Center of Atlanta upon exam an mri of the cervical spine was ordered...came back with a questionable abnormality involving the cervical spinal cord posterior to c6 and c7...the dr showed it to us and said "its not MS, MS lights up bright, not dark, " however ordered a second complete spine mri with contrast. so that I didn't have to pay another 425 she told me to mail the disk to the office and she would call me....I never got a call ....so three weeks later I called and spoke with a nurse who said there is that abnormality in the C spine, a synovial cyst posterior to the s2 vertebral body, L4-L5 mild disc bulge, mild disc dissection involving the mid to lower thoracic spine T9-T10. There were no new enhancing lesions found - OK so were there old ones are the dark spots in my spine at the cervical level old lesions who knows...the neuro at the MSCA told me that the problem was in my spine but there was no evidence of active MS...so bye bye I mean I guess I could go back but for what ....she told me I needed to see a neurologist ....finally I went to Emory University severe constipation-new, severe-hip and leg pain, and sleep issues that were freaking my husband out.....General Doc did exam called for neuro same thing poor reflexes now in both right and left, referral to Emory MS specialist....but reminded me I dont have insurance so I would need to pay up front for services more steroids and out the door I went. My question is since all of you have similar symptoms some not, and the neuro at emory did tell me it is looking more like parkinsons to him but this Dr he wants me to see there is so wonderful he would be able to tell as he is a movement specialist who also works with difficult MS diagnosis.  SO HERE IS THE QUESTION what does any of this mean to any of you who know what you have, what does it mean to those of you like me who don't know but just want their life back....? Is there a DR. in this forum who can tell me what kind of Dr. I should see next....I sold my car to either pay to go to Emory or set aside to buy more assistave devices, I can't take too much more of the pain and symptoms I have stopped taking every single med as suggested by the emory doc so that none of my symptoms are masked when I go to my appt, so I have spent the last three weeks going down hill rather quickly and suffering a great deal....I have extensive neuro disease in my family history?  anyone smarter than me have any suggestions....Im a tough lady, I wanna know what this stuff is and move on with life so any suggestions would be greatly appreciated...it seems like some of the ppl on here are really smart and also care about others hope one of you reads this post

[btfldisaster]

I actually copy and pasted to my word file and made it big enough for me to see and really chopped it and made it easier to read I hope...to think I was an English major in my last semester before graduation when this all happened I hope you can read and understand the new post it is titles different as well I just have to figure out how to delete the old one. thanks for reading it sharing makes it a little easier since I hold most of this in....I am the strong one of the family YIKES

[doublevision1]

year = here.  stupid auto-correct on my iPad.

[doublevision1]

Hi there, I haven't read your post yet, could you copy and re-post ut break it up into small paragraphs?  Many year have vision symptoms which makes it difficult to follow large chunks of text.  I think this would increase the likelihood of your post being read and responded to.  Thanks!