hello my naame is james and i am a 35 year old married father of 7 children.5 years ago my hands started having myklonic jerks and moving to my arms. well dozens of mri's 5 or 6 cat scans couple of surgerys and they diagnosed me this may with CIDP and ms. possible guillian barre sysndrome, i am now in a wheelchair most of the time and lose the ability to speak often. i and my wife feel so alone, everything costs so much and no one can confirm anything unless its bad of course. PLEASE HELP!!!! we are lost and don't know what to do
My goodness, you have had more than your share of hardships! My heart goes out to you and your family.
I had to look up CIDP, apparently it is an even rarer disease than Multiple Sclerosis. You are the first person I've met who has been diagnosed with a demyelinating disease of the central nervous system and another demyelinating disease of the peripheral nervous system. And it sounds as though Guillain-Barre Syndrome is the differential diagnosis alongside the CIDP, so I was wondering whether you've had second opinions on those peripheral neuropathy diagnoses. I'm guessing that MS has been confirmed by the presence of brain and spine lesions on MRIs and by LPs. Have you had a second opinion on the MS diagnosis, seen an MS specialist? It just seems so unusual for one person to have these diagnoses. Are you satisfied that the diagnoses are correct?
Below are links for the National Multiple Sclerosis Society and the CIDP Foundation. You can contact them (and find your local chapter) about resources for mobility equipment, counseling, and sources of financial assistance for therapies:
Have you filed a claim yet for social security disability? Do you still have medical insurance? If you have no medical insurance, your county health and human services dept. should have a free clinic in your area. Private charity clinics are another option, I've used those myself when I had no insurance.
You and your family must feel terribly isolated and all alone with this right now. But if you do online research and make contact with resources such as those listed above, you can find help and emotional support. And come here to vent and ask questions anytime, we have lots of people with a lot of experience who can help.
I really have nothing to add to what Kim said so I am just saying welcome to our group.
One thing I will say is that with all your promblems you are going to have to advocate for yourself as a lot of people will say " well that's another conditon so call your other specialist". It will be up to you and your wife to insist when you know what is going on with you and you are the best one to judge that.
hello kim yes as sad as it is i have had the ms diagnosis triple checked. CIDP was the first to be proven. With the guillian barre they have no DIAGNOSIS yet but the systoms are almost a perfect match. Thank you for the advice and yes i have filed with insurance and the state and got their top notch insurance.No im not really satisfied but i deal in facts and these docs have lots of facts.Protien numbers and MRI are really hard thing to discount.Yes they can make mistakes but the same mistake 4 times, 2 lumbar punctures and 2 mistakes kinda odd.I belive there are no mistakes so my sickness has a purpose i just dont know what it is. We do feel isolated but people like you all make it not so lonley thank you all so much
thanks rory i guess i get worried that my impatience or fustration will cause me to make a rash decision. No doubt there is enough specialists for a specialist to have one and it does seem with most doctors when they get stumpped they send you somewhere else. Thankfully i have a good doc and she has never given up in 5 years.We will remember we are the ones in charge thanks for the boost in confidence james
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