Not diagnosed..need help.
AnonymousJune 9, 2012 at 1:07 am
Hi. I am new to this forum and need some help. Seven years ago I had GBS. Came on quickly…hospitalized…IVIG X2 and then plasma exchange X6. After about a year I was back to near normal. Since then I was able to play hockey, mountain bike, whatever I wanted without problems (sometimes a post GBS headache but that was it). About a month and a half ago I started having problems with my balance. Then about a month ago all of my previous symptoms came back…hard. I had trouble breathing, no balance, dizziness, loss of proprioception in my legs, weakness, extreme fatigue, numbness in hands and feet, tight stomach, twitching everywhere, some pain along nerve routes (medial deltoids, back) and a really stiff neck. I rested for a couple of days (couldn’t do much else) and then went back to work. I went to a neurologist who did the usual tests. He thought it was not a relapse of GBS nor CIDP. He tested me for lyme disease and west nile. Both negative. He did all of the usual neuro checks and I did fine on all of them. I just came back from EMG and NCV study and all was normal. He assured me that I do not have CIDP. I will be going for an MRI of my head next week. Throughout my day I still have the periodic numbness in my hands and feet, poor balance, a stiff neck, fatigue, odd breathing sensations, muscle twitches, dizziness, tight calfs, and weakness in my thighs and upper arms. I don’t know where to go next or what to do. Any help would be greatly appreciated. Thanks so much.
June 9, 2012 at 1:27 am
It seems that you are doing the right thing by seeing a neurologist promptly and getti g appropriate tests. That’s the only way you can get a diagnosis. If you are back at work your condition must have stabilized or improved, and is not continuing to deteriorate, is that correct?
AnonymousJune 9, 2012 at 1:41 am
It seems to be hovering at the moment. Better than the flare up but still not feeling the best. My balance is not good, my legs are still a little weak and my breathing is a bit odd. My biggest concern is that my neurologist does not have an explanation of my symptoms but he is convinced that it is not CIDP. I am not sure if I believe him yet. My other biggest concern is that I keep reading that the best way to help prevent any worsening is by early treatment. I keep hearing horror stories about diagnosis not occurring for months to years and by then much irreversible damage has occurred. My days at work are challenging because of these symptoms. Especially the balance.
June 9, 2012 at 2:12 am
Early treatment is important, but IvIg treatment is not given speculatively. A good diagnosis is required first. It is not unusual to be uncertain of the diagnosis for a time, because thete is a lot of variable in neurologic disorders. Often diagnosis is not straightforward. I am interested, however, in why your neurologist rules out CIDP. The electrodiagnostics may be normal merely because the disease has not progressed sufficiently. According to Parry and Steinberg, electrodiagnostics will show demyelanation in about 90% of cases of CIDP.
June 9, 2012 at 2:35 am
Your case seems very similar to mine. I had GBS in 85, but doctor at the time told me there were no treatments for GBS so I recovered through mother nature. Got back to about 85% and did well with no symptoms until the summer of ’96 when I began having balance problems, muscle twitching and grip strength loss. Went to a new neuro and he began with the usual testing for heavy metals, MRI (to rule out MS), nerve conduction, spinal tap, etc and came up with no definitive diagnosis. As my symptoms continued to get worse over the next six months, he finally scheduled a nerve and muscle biopsy which confirmed the diagnosis of CIDP. Just another avenue of exploration for you to inquire about.
Has your doctor mentioned the nerve or muscle biopsy to rule out CIDP? Based on your post, the question the doctor has not answered is why he is ruling out CIDP without exhausting all of the diagnostic tests available? Has he had other CIDP patients?
You are right about early treatment, it is very important. I wish you the best in the future and hope you get a definite diagnosis for the cause of your symptoms so you can get the appropriate treatment asap.
AnonymousJune 9, 2012 at 2:59 am
Thanks for your help everyone. He did not mention the muscle or nerve biopsies. I will definitely bring that up and see what he says. I am not sure how he can be so definitive about ruling out CIDP. GAVol, I am interested, how are your symptoms now and are you being treated and if so with what, and if so…how are things going (am I being to nosy)? My neurologist mentioned that he does have a patient with CIDP that presented with foot drop. I don’t want to get to that point before diagnosis and treatment. Again thanks everyone for your input. I, like many others i am sure, are frustrated to have had GBS in the first place. And now after so long of feeling well to be faced with another….something…beyond my control, and to say the least…concerning health issue.
June 9, 2012 at 11:57 am
Another test your dr should order is a spinal tap to check your spinal fluid protein levels. He should also order an MRI with & without contrast of your spine – might as well get it while you are having your brain MRI. Did he order a heavy metal blood screen?
Remember – if you are not comfortable with your dr, it is certainly acceptable to find another one.
June 10, 2012 at 1:59 am
I can tell you from experience, it’s better to just get it all done at one time. My daughter was 4 when her symptoms started. She was sent to the hospital & on the 1st day a brain MRI was ordered. It came normal then was changed to she has a slight chiari malformation (her brain stem is 2mm too long). On the 2nd day in the hospital she had to be sedated again & a spinal MRI was performed.
To me, it just makes sense to do both. That way the dr can look for any lesions, masses, inflammation, etc that could be causing your symptoms. I believe it’s more comprehensive health care.
AnonymousJune 10, 2012 at 3:07 am
Remember that GBS and CIDP are generally the same activiy, only the severity and time are different. They are demyelinating polyneuropathies. GBS usually hits hard and fast, doing the damage rapidly and the stopping, leaving the patient to “Get Better Slowly” CIDP is the same immune attack, but the damage occurs over a longer time period (at least twmonths) and most times is slower to develop although not always. As others have said, CIDP is usually a diagnosis of elimination because there is not one particular test that indicates it, just tests that rule out others. The EMG and NCV tests should show demyelination. Please try to take care of yourself and don’t work too hard. When I cut back my work andhours and stress, I found that my CIDP did not worsen but stabalized somewhat.
I hope you get your diagnosis and can begin to deal with what you have.
Be Good !!
June 11, 2012 at 12:33 am
My CIDP has been up and down over the years. Had it in remission a few times, but it has slowly progressed the past couple of years. I’m happy to share my experiences with this bummer disease, but please remember, everyone seems to respond differently to the various treatments being used, so what stops the progression for one, may not work for another. Currently I am doing plasma exchanges every three weeks with an IV dose of 1000 mg Solumedrol immediately after the exchange. I also take CellCept, 2000mg a day. The lack of treatment for my GBS is ’85 caused permanent nerve damage, so I was behind from the get go with CIDP.
Over the years I have tried pretty much every thing on the market, including several of the newer MS drugs in a effort to stop the progression. Cytoxin worked for a while, but sickness and fatigue caused me to stop. Had some short term success with Ratuxin also. Oral prednisone was helpful , but long term use of this can kill your kidney’s, not to mention the weight gains. IVIG was never helpful me, but many on this site respond very well to it.
While I can’t run, jump and play with the guys, I have been able to adapt to my limitations and enjoy an active life. I still restore antique cars as a hobby and we travel a good bit. I chose many years ago to accept the disease for what it is and concentrate on what I can do, not what I am no longer able to do. The human body is an amazing machine and the ability to adapt has so far, always been there for me. I do use a cane when walking to help with balance and if a lot of walking is involved in an activity, I have a small electric city bug scooter that I use. I retired six years ago and my quality of life changed for the better almost immediately. You’ll see many posts about the effects of stress.
My body’s inability to get this into remission is no reflection on how you will respond to treatment if they do diagnose CIDP, so don’t get down on yourself. It is a very frustrating disease and can really play mind games with you, so stay positive and keep educating yourself so you can ask the necessary questions. Hope you can get a diagnosis so you can get treatment quickly.
Kelly’s thoughts on another doctor is certainly something to keep handy. Keep us posted.
June 11, 2012 at 3:34 am
the diagnostic period is the worst for these type of diseases! it’s a big guessing game, test after test, always waiting weeks to even months to get in and get results etc.
To get my second opinion, i flew out to mayo in MN and did one busy week full of test after test. If i had to do it all over and know what i do now, i would have just gone there in the first place and got everything done and had answers in a week–would have been so much easier, less work time missed, and treatment started sooner. Lori
June 11, 2012 at 3:38 pm
Sorry to hear you are going through this!! It isn’t easy when our body’s give us such a struggle!!! I had a normal needle EMG x 3, and NCV only one area showed demylenation around my knee (which is where I was initially sympotmatic).. They did TWO lumbar punctures on me, and testing and more testing all while I had to wait and go to more appointments and wait longer.. it was SO frustrating.. Finally I was admitted to the hospital for IVIG treatment.. anyhow the way they ended up finding my diagnosis of CIDP was skin/epidermal nerve biopsy- low risk, easy procedure with only local anesthetic, I believe a few others on here have had it as well.. sometimes I guess it doesn’t show up on EMG/ncv, but will on there.. As far as the LP goes.. by the books you should have elevated protein, but it seems a lot don’t as well!
As far as them waiting to treat you.. I had the same frustrations.. when I was in their office they thought well you “look” ok.. they would tell me how people would come in in wheelchairs and dragging their legs.. they didn’t seem to understand that I was only 30 years old (before this very atheletic jogger etc) and I had a newborn and 1 year old and full time physical job.. that I coudln’t wait to be dragging limbs (not sure why this is a hard concept for some dr’s to grasp) They even told me it appeared my muscles were functioning like they were 90… but said “if it worsens we will start treatment” haha.. it wasn’t acceptable to fucntion like a 90 year old for me!! Anyhow I saw quite a few outpatient neurologists before (I was so weak and tired, the last thing I felt like doing is seeing more drs.. but i needed help) getting referred into the university ALS/NM clinic they moved up my appointment and then admitted me into the hospital- my breathing was quite affected by this point…. Anyhow, the unkown is the worst.. I was just about to head to mayo myself before I finally had someone help me here locally. Good luck!
AnonymousJune 11, 2012 at 10:44 pm
Thanks everyone. I will certainly recommend the skin/epidermal nerve biopsy. I asked about extending the MRI to include cervical, thoracic, and lumbar and was told that my insurance company only authorized for my head. It is concerning that insurance companies get to dictate tools to aid in diagnosis. I thought that a little odd. I looks like I have a couple of barriers ahead of me. Thanks again for everyones input. It does seem that it is difficult to get a quicker diagnosis when you look healthy. I too am (was) very active. Mountain biked 3 times a week, ice hockey once a week, father of two young busy kids, and husband…this is not easy for me. With the GBS I new that I would recover. This is too uncertain for me. The game with the Dr.s is going to be the most troubling for me. Even more frustrating is that i am an operating room nurse and I assist in surgery as well. I know all of the medical terms to use in order to describe my symptoms and still feel like I am being second guessed. Frustrating. Thanks again for all of your support and input. Everyone here are great resources. Thanks again.
June 11, 2012 at 11:47 pm
It is true that insurance companies do influence treatment to a significant xtent, but they don’t do it arbitrarily. They have their own medical experts evaluating what treatments are medically necessary, so they don’t waste money on treatments which are not ne essary or even known to be unhelpful. If they did not do this, all sorts of useless tests would be ordered up in order to milk the insurance companies. You can always, of course, pay for any uncovered procedure yourself if you think it necessary.
June 12, 2012 at 12:01 am
It’s very easy to appeal to your insurance company. First, your dr needs to draft a letter stating that the additional MRI’s are necessary to dx you. It will be cheaper to do them all at the same time – so that will appeal to the insurance company. Usually it works & you don’t need to take additional steps.
I think it’s pretty crappy that some person in a cubicle gets to decide what tests/treatments are necessary. I think that should be left up to the dr’s – after all that’s what they went to medical school for. Insurance companies are in the business to make money – it’s the way the system is set up.
We have been VERY fortunate that our insurance company hasn’t given us any problems with covering Emily’s treatments/tests. (KNOCK ON WOOD!)
June 12, 2012 at 4:14 am
Canuk – I totally can relate.. I have to have very good fine motor skills for my career, and when this started it hit my hands hard.. I could’nt pick up and do things I need to do – from scooping baby formula, to my job.. I had multiple dr’s ask how stressed out I was with being a mom of two young kids etc etc.. ugh I told my husband.. I hope the only problem is that I am crazy!! That would be an easier fix, and I could at least hopefully grow old with my kiddos! The only thing stressing me out was this situation and how difficult it was to be taken seriously initially! It is in deed very frustrating..
Kelly and GH- it is crazy how much money I pay for insurance monthly and how much it seems to not cover.. in addition to the stress of being sick, working, taking care of kids,, keeping up with these insane bills adds A TON of stress! Then the stress to make sure I work enough hours each month to stay insured, working around my IVIG schedule!!! Either way I am just thankful that IVIG works!
June 17, 2012 at 7:44 pm
bny806, I know about crazy insurance premiums. I took over my insurance under COBRA when I lost my employment, and most of my disability check went to insurance. Fortunately, I could manage it until I qualified for Medicare. My premium supplemental plan is only about a quarter of what I was paying before
AnonymousJune 18, 2012 at 2:48 pm
Dear GAVol / Fred,
Your story looks a lot like mine. I just think I am a bit younger though. I got my first symptoms a year ago, it took over half a year to be diagnosed CIDP. I am treated in the best hospital we have in the Netherlands (one of the academic hospitals). They cannot cure me, but try to make my life as good as possible. Some nerves are damaged too far to heal. My insurance company does not object so far. I started with corticosteroids, now IVIG, every four weeks. Like you, Fred, I try to enjoy the things I still can do. I am thinking about retiring, which is a hard decision, I love my work and I am only 43 years old. I still can climb stairs, indoors I walk without aid, small distances outdoors I use a cane, longer distances I use an electric scooter, I can work a little bit in my garden, on good days I can go to the supermarket or drive to the forest nearby. My wife still has a fulltime job and we own a car, so together we can visit family and friends etcetera. We are planning a little holiday together. I just want to state that a good quality of life is possible with CIDP, though it seems to me that the Europesn system is a lot friendlier for disabled people than the American system.
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