Help getting a diagnosis
AnonymousApril 6, 2010 at 8:54 pm
Hello, I have been dealing with what I believe to be CIDP for 8 years now….A bit of background on the reason I believe it is CIDP…my family (all girls) has a very strong history of auto immune issues..my mother has Sjögren’s and Raynaud’s, one sister with Lupus, a first cousin on my mothers side with Lupus,Sjögren’s, and Raynaud’s, a sister with CIDP, a sister showing signs of Raynaud’s…..that leaves me….My problem actually started in my ear (the ear thing may be totally unrelated). It started as a very sharp stabbing pain that would come and go it morphed into a burning sensation and my neck and shoulder started bothering me (on the same side) and that same time my fingers on both hands started tingling and going numb….sometimes for a short time sometimes for as much as 3 weeks. The pain in my ear became constant, and my toes began going numb, and i woke up one morning and I couldn’t use my arm…I could grasp things but I couldn’t pick anything up or get it up above my head…I gradually regained the use of my arm. At that time I insisted on being sent to Johns Hopkins…they diagnosed me with bilateral
carpel tunnel and a compressed ulnar nerve, EMG of my legs was normal at this time…that is exactly what my sister was told at this point in her progression, she even had carpel tunnel and the ulnar nerve surgery……I got discouraged and kinda slacked off the “quest” after that…then my neck and shoulder got so bad I couldn’t take it so I resumed the fight….I was sent for yet another MRI(previous MRI”S had come back both normal and showing spots). That MRI showed something in my brain that would not allow them to rule out CIDP but it also showed a bulging disk…I bet you can guess what is coming!!! I need a disk replaced in my neck and that would solve all of my problems…..I went ahead with that surgery and the ONLY thing it changed was it relieved some of the “tension” in my neck…everything else stayed the same.After healing I once again started searching for an answer…I am dealing with the Military health care system so you have to
throw in with all of this never getting to see the same Dr’s more than once…..I had a new EMG administered by the Dr at my new pain clinic (I was pleased that the new pain clinic Dr knew what CIDP is!!) it shows sensory neuropathy and delayed f waves in both arms and legs…Friday I saw my new Neurologist armed with a super fresh EMG(completed the day before)…her comment was “maybe you were cold”!!! Now I have to start again with all of the tests…a new MRI and blood work are he current requests…..now for the final bit of info……my husband and I are separated and I got him to agree not to file for divorce for 1 year……my
health insurance will go away in 12 months………HELP, HELP, HELP…I need to know what to say to who to get them to listen to me and get moving with some kind of treatment other than pain meds…….my sister can barely move…IVIG is not really doing her much good as she was so advanced by the time she was diagnosed (she got the award for the largest,most scarred nerves they have ever seen at the Mayo clinic)and I am following her course of progression exactly……I am so scarred I will end up like that if I cant get someone to pay attention…..The new pain Dr admits that he has never seen an EMG like mine and he is at least willing to do the research but diagnosing CIDP is really outside of his specialty…..I am tired all the time, I always feel like there is too much gravity…my limbs are sooooo heavy, everything hurts if I don’t closely monitor my activity level…..I can see a HUGE difference in my tolerance for activity in just one years
time…..anyway…sorry for rambling but any advice would be much appreciated!
April 6, 2010 at 10:27 pm
I would first like to tell you how sorry I am that the gov. is not helping our servicemen and their families. Your predicament is very complicated on so many levels besides the vet docs. If it were me, I would probably beg the last doc that seemed sympathetic for some prednisone. It is pennies on the dollar, the cheapest way to go. I can’t imagine he would argue. As well it might help with your other issues, ear, neck etc. Perhaps once he see the steroids working, he would agree to other treatment. Obviously steroids would not be the first choice, but I don’t really see the va hospital handing out ivig. Once it is established that steroids are helping (if they are) perhaps you could convince him to go for the gusto and advance to cytoxan to give the best chance to arrest this before you loose the insurance. When your insurance time is up, if you were on ivig (my first choice, if it works) you would be off of it in a blink of an eye. At least you would know steroids work in the event he does not agree to the cytoxan. Hopefully the steroids could hold you until this public option kicks in. Honestly I can’t imagine it being any better than the va service, but it would be something.
About your sister, maybe you could suggest to her to ask for cytoxan, since she has already tried ivig and whatever else. She could benefit from it. She has nothing to loose and everything to gain. It could help her other issues as well.
Keep us posted, I will re-read later or tomorrow to see what I can add, I have written quickly as I wanted to respond to you with at least some info. There is a member Jim C, he was in the service, I am not sure if he is under va care or not but maybe he could help. Other service people will be along I am sure with a better plan than I can offer regarding the “system”.
AnonymousApril 7, 2010 at 12:25 am
Dawn, First of all thanks for reading my novella!! At this point all I want is for someone somewhere to tell me what is going on, if this is not CIDP what is it. Hopefully I will be able to stick with the Dr’s I have now long enough for them to figure it out. As for my sister…by the time she got a diagnosis she was so far along that they didn’t expect the IVIG to do much more than stop it from progressing. They told her at mayo that she,even for them, is a challenging case. She is now after 4+ years of IVIG just starting to get some reflexes back …..I at least have her to consult with….I call her when something new pops up and she confirms that I am not crazy and I should tell the Dr’s. I am following her progression exactly and that scares me!!! My big question is what do I need to say to get someone to listen, to consider CIDP (just because I don’t follow the text book example). Obviously what I am saying is not getting through….Kris (my sister) has told Dr Dyke about me and just from what he was told he believes it is CIDP so when she goes to her appointment with him on the 20th she is going to bring him a copy of my records. Hopefully he will look at them and take an interest…my entire family is in Minnesota so if I can get in to Mayo that way if would be very convenient for me to go….even if the military will not cover all of the cost! Anyway, thanks for taking an interest in my story and I appreciate any and all input. Melissa
AnonymousApril 7, 2010 at 7:51 am
Sorry you are going through all this. It sounds familiar, it took years and many doctors before I got an accurate diagnosis. It is very frustrating. At one point I got told that carpal tunnel and degenerative disc disease (lower back) were the cause of all my troubles. When I asked the obvious question, “Well then why is my face, tongue and ears numb?”, the neurologist got angry.
I think going to Mayo and possibly to the same doctor who treats your sister is a good idea. You at least want to make sure you are seeing a doctor who actually treats CIDP cases. The difference between one that has and a doctor who has only read about it in textbooks is night and day in my experience.
Also since they seem to change doctors on you frequently, use that to your advantage if/when you have reached a road block with the local neuro. See another one.
Wishing you good luck. I know how tough it can be.
AnonymousApril 7, 2010 at 8:39 am
you need to request to be sent out in town to see a real nurologist. I am prior service and familiar with how the military healthcare works and you will never find your answers at the hospital on base. or at least that is always how my experience has gone there.
If it were me I would try to go to the nearest university hospital and see the neurology team at one of those hospitals because they are researching hospitals and they take more time to figure out whats wrong with the patient than a reg neuro.
As for your sister I can’t beleive Mayo would leave her on IVIG for 4+ years if its not working. she really needs to let them know its not working an request a new treatment. There are many out there to choose from. Plasma Pheresis, prednisone (I wouldnt request this one cuz you cant stay on it long term. immuran, cellcept, ruituxan, cytoxan and many more.
My son did the reg protocal IVIG, Plasma Pheresis, prednisone and none worked, he told our neuro he wanted cytoxan and for the first time he’s on his way to being normal again. He has a very aggressive form of CIDP. he was in a wheelchair 4 months after getting sick and has been in one for the past year. after 2 months of cytoxan he is walking with a cane.
If a treatment doesn’t show signs of working after being on it for at least 3 months then move onto the next treatment. dont let a neuro waste your time on it. a lot of them will tell you that you have to be on IVIG for a couple years before you see improvement that is so untrue. they just dont know enough about CIDP and the other treatments to know what to do next. so they make you stay on treatments to long. YOU HAVE TO BE YOUR OWN ADVOCATE!! stay on them to move to the next treatment if they dont find one that will. we are very fornunate to live in Michigan and we have univerity of Michigan and Wayne State University to choose from. Our neuro is Dr Richard Lewis out of Wayne State Univ. he is also on the board of this foundation and he helped to name the CIDP variant Lewis-Sumner. He is wonderful and listens to his patients. now when Ryan first brought up doing cytoxan he told him he wanted to try a few different treatments first and we said ok but since they didnt work we kept pushing for cytoxan and he finally said yes, sometimes you have to be patient and do a few treatments before you get to the one YOU want to do but if you have a good neuro its ok to wait. plus out neuro treats the illness aggressively and doesn’t waste your time on one treatment for years. he beleives if it hasnt worked in a good amount of time then move on to another one until you find a treatment that works.
Ok I have rambled on too long but I truely hope you find a neuro who is knowledgeable in CIDP and you get a correct dx even if its not CIDP.
Rhonda (Ryan’s mom)
AnonymousApril 7, 2010 at 9:33 am
My first doctors were civilian because my husband took me to a civilian hospital ER. Due to the withdraw of troops from Iraq there are more specialty doctors available for dependent care. After 2 1/2 yeas with civilian doctors I must now be seen at our military facility (Wright Patterson AFB) in neurology clinic. My husband and I were very impressed with the neurologist, he was well informed with GBS/CIDP, very easy to talk to whether I agreed or disagreed with him. I gave approval for him to let three medical students in during the entire visit.
I know how it is seeing different doctors and being misdiagonosed through the military, it is frustrating makes you feel helpless.
Ask your primary care doctor for a referral, try for the civillian nuerologist first if you can’t get it then ask for a nuerologist in the nuerology clinic at their facality.
We have tricare prime and they covered 100% of 2 months in civilian hospital, doctor visits are very small copay.
April 7, 2010 at 10:21 am
Hi Melissa, Mayo has a certain amount of money that they allow for hardship cases. I bet if you contacted them and explained the situation they would take it under advisement. I am surprised that your sisters doc did not try other things w/the ivig or at least add an imunosuppressant to the mix. Keep us posted! BTW is Dr. Dyke junior or senior? I know that his son was training under him.
AnonymousApril 7, 2010 at 8:58 pm
I am so glad that I took the leap and joined this forum!
Ladyg, I have also been told I have carpel tunnel, a compressed ulnar nerve, fibromyalgia, and of course I had the disk replaced in my neck!! I feel kind of lucky…my sister unnecessarily had carpel tunnel and ulnar nerve surgery! I wish I could manipulate the system like that (using having to see new Dr’s to my advantage) but I don’t get to choose when I see a new one, the military does…it usually happens because a dr has been here long enough for their patent panel to fill up so they kick the dependents out and keep the active duty people!
Rhonda, As far as military health care…I have been lucky up to this point .. I have had 2 surgeries with military Dr’s and I am in the Washington DC area so I do go to Walter Reed but for some reason every time I start with a new Dr they all want their own set of tests and by the time I get them all completed it is time to move on to a new Dr….It has not always been this way…hopefully we can get all the soldiers home and then the Dr’s would not be so overloaded! As far as Kris is concerned I am going to pass your post on to her if that is ok with you. She is going to Mayo on the 20th and will be able to ask about some of the things you suggest.
Dawn, I am hoping that when Dr. Dyke sees my records he will be interested enough to help….I know both of the Dykes are practicing at Mayo now but I am not sure who kris sees…I think senior! I am also hoping that maybe the family connection (the genetic aspect) of all of this will interest him and help me get there!
Again…thanks to everyone for the advice….Its nice to have a group of people that understand this to bounce things off! Melissa
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