Oh sheesh where do I start!!

[20yrsgonebysofar]

For 20 years I have had strange symptoms come and go. The only constant is pain, memory loss and some communication problems. I have mild tingling in my legs, severe muscle spasms in my feet, sensation in my hands is going away quickly and have spasms in them as well, severe pain down the middle of my spine...as if someone is driving a steel rod with a hammer through my spine, retro bulbar optic neuritis (confirmed diagnoses...at least this week {sarcastic}), uncontrolled gait and hand motions, headaches, extreme fatigue, urinary and bowel incontinence and various other goofy things. I have been diagnosed officially to this point with optic neuritis and fibromyalgia. I was diagnosed with the following and then had those diagnoses thrown out: MS...diag in 2005 took Copaxone had bad reaction then took Rebif (no mri evidence), Lupus....dont remember when i was diag with this probably back in mid 90's (no blood test evidence), Bipolar diag date about 20 years ago due to personallity change (who knows just because a dr didnt think i was bipolar), migraines diag as a mid teenager....still affected by them. Small (very small white spots on several brain mri's apparently now gone), my favorite "there is nothing wrong with you" not sure this is a diagnoses but I cant remember the rest of the **** I have been told I had. I have been on various medications...too many to list but currently taking Klonapin for muscle spasms and tremors. Its an emotional and physical rollar coaster...."you have this...." Ok how do we fix it or treat it and what should i expect....finally get to the acceptance part of "you have this" and oops guess what "you dont have this"...several times at least 12-15 different diagnoses'. I need help. I have had to quit my job 2/3rds of our income...we lost everything (material things really dont matter at this point, i have a roof over my head and can still go toe to toe with a teenager..lol) I have been told by the last neurologist I saw that "you might want to try to get into University of Cincy neurology, maybe they have some ideas(have been trying for over a year to get into cincy neuro). I dont have medical insurance...waiting on disability.....and waiting and waiting etc. I need someone either a Dr or researcher to tell me what I have or is willing to figure me out. I have exhausted Cincy drs. I am in physical and occ therapy which is helping me keep my strength but is really slow at helping with the coordination problems. I am tired of "we just have to wait and see what pops up" and the constant passing me off to other drs who pass me off to other drs etc. I guess this just about covers it and not sure its in the form of a question but if anyone has any ideas please feel free to post your ideas...even if you think i'm a complete lunatic cause i've already heard that one too....lol.

[patsy10]

Have you seen an MS specialist?  They are able to differentiate MS from diseases that mimick MS.  Your symptoms sure sound MS-like.  I have lots of symptoms  too with no  diagnosis other than Fibromyalgia.  You could also have lyme disease.  Have you researched it?

[20yrsgonebysofar]

Thank you for your comment....I have seen multiple Neurologists....is there a sub specialty for MS? I am currently researching the following with my primary care clinic dr: Lyme disease, Parkinsons, Motor Neuron Disease, Addisons Disease and a host of other auto-immune diseases. I've been told I have to just wait to see what pops up next that might give them a clue to what is going on....20 years of things popping up....how many more clues do you need is my question....lol! But thanks again for your comment I appreciate it.

[patsy10]

A neuroimmunologist is an MS specialist.  This is their specialty.  You can find them at large, teaching facilities.  I would look for one with an MS center.

[20yrsgonebysofar]

I had no idea there was a sub-specialty....we are supposed to have neuroimmunologist in Cincinnati...I did some research...there are more at the zoo and aquarium than at the University of Cincinnati...UC has one who does research and sees patients once a week. I checked and am still on the waiting list...could still be another year or more until my spot comes up....unless its filled by someone with a worse condition. I am trying to get my dr to get me a referal to The Cleveland Clinic (was debating that before I found this site). There is a huge demand for younger and more specialized drs of all specialties in Cincy. For some reason the insurance companies picked Cincy as a place to lowball insurance payments to drs and facilities. So most of the younger or more specialized have left the city for other locations.
Thanks a lot for your insight into this. I am really at a loss and you have given me another route to take. Thanks again.

[patsy10]

I saw an MS specialist at Cleveland Clinic Mellen Center.  The wait was 3 months.  They will also put you on a cancellation list so you could get in sooner if someone cancels.