First GBS, then CIDP
AnonymousMarch 13, 2010 at 4:10 pm
I am curious about those who were first diagnosed with GBS and then CIDP later. What was the time lapse between the diagnoses? How was the diagnoses made, ie. what kind of diagnostic testing? What were your initial symptoms and then later symptoms? What are your current symptoms?
There seems to be some overlap between GBS residuals and CIDP symptoms and I am trying to understand how the distinction is made.
March 13, 2010 at 5:04 pm
Yes, we were one of those people!! First dx with climax of symptoms was about 5 weeks, 4 weeks and maybe 3 days. Gbs was our dx. ivig was administered we went home running down the halls and trick or treating 2 weeks later. This was after paralysis (not able to walk or hold a pencil, could stand to urinate if held) difficulty breathing, urinating bm. about 31/2 months later while in basketball practice, it was starting to get harder to shoot and run, legs were getting heavy again, arms and legs like jelly, went back to neuro and did another ncv/emg, more damage, attempted another spinal but resident botched it. At this time, clinical was enough. About a week prior to this is when I put the people on this site through hell asking them questions every which way asking if it was residuals of gbs and overdoing it or cidp. The consensus was about 1/2 and 1/2. Then we just went to doc to be sure. At this time we did another ivig and again marvelous results. The doc was a little confused because typically a relapse would start to show within 6 weeks, the full life of ivig. So at this time he said, maybe we just did not get all of the autoantibodies the first time w/the initial treatment to treat gbs and this should do it. He did say that if it came back again it would be cidp and Kev just had a longer relapse time. And so it was and here we are. That is why I am nervous about this wean and being off in June. I am wondering if by Sept. we will be in the same place. That is why I want to get things in order with this candida in the hope that the leaky gut and allergies are what triggered his cidp with the constant trigger factor.
So…yes we graduated to cidp after 2 relapses each being about 31/2 months apart.
AnonymousMarch 13, 2010 at 10:14 pm
In my case, I’m on my own, and had no choice but to go everywhere with my crippled body when the symptoms started up. After the flu shot, the symptoms came on gradually over a few weeks. I went to the doc during this time and was sent for routine blood-tests. I went to the hospital staggering and shuffling & supporting myself with a ski-pole, told the receptionist and the blood-work technician what was happening to me, was on the phone with the doctor’s clinic staff and flu clinic coordinator when the contractions and paralysis took over and I was falling and had the stroke-like symptoms, talked to nurses I knew, telling everyone what was happening to me, asking questions, getting no answers and being turned away. No one cared.
No pamphlets had been given out at the flu clinic, so I didn’t know what was happening to me. After the first few weeks, I dug around in my files and found the Flu Clinic pamplet from previous years and saw the warning signs of a reaction. Looked up the info on the net. Then tried to discuss this with all these people (as I just mentioned), but nobody cared. 6 weeks from onset, I found a walking cane, phoned various places about a walker. I thought GBS was only temporary, and that people fully recovered within 2 years. I kept thinking this was going to happen.
Hospital and clinic staff and doc showed no interest. 1st Doc just took notes on his computer, watched me walk like Frankenstein, said nothing and walked out the door. I got the impression I was supposed to put up with it, but I went back after a few more months of hell, he took more notes, said nothing, and the appointment was over. Had several more appointments like this, just notes on computer, no comments from Doc.
Finally, after 1 1/2 years, 1st Doc made appointment for CT scan. GBS was still not mentioned, but I was pretty sure I had GBS because of the symptoms came on after my 2007 flu shot. 1st Doc said CT scan showed no MS, so he was planning on having me get a MRI a few months later. I was making the appointment to do this when the receptionist explained the procedure to me, and that they were going to inject me with dye. I have many allergies, dye is one of them, and once before in a hospital-test, I was injected with dye and went into convulsions. I had misgivings about the MRI and did not go through with the appointment.
I found a new Doc. On 1st visit, 2nd Doc renewed my meds, and was friendly and competent. Even held the door open for me when I staggered through the doorway. On 2nd visit, she renewed my meds again, immediately discussed my condition, calling it GBS in a matter-of-fact way; we talked about it being CIDP. She told me that she couldn’t do anything to help me walk again, not even PT, but inquired about my finances, insurance, pension, etc. I told her I have basically nothing but my savings to fall back on, employment is greatly diminished, etc. She listened, then checked my legs on the table, reflex tests on my ankles, then hundreds of hot-needle tests everywhere on my legs, feet, etc. Made lots of notes on her computer. Suggested pain meds and seeing a neuro for spinal tap, because I need a DX for disability.
But I have misgivings about damage from a spinal tap, and discussed this with her openly. I would rather just keep on doing the best I can with what I have left. They can’t help me walk again; I’ll never be the same, and I’d rather keep what I still have, than risk further damage at this point. At least I can still play a musical instrument to some extent, and teach to some extent, but if I become more damaged I will lose that too, and then not know how to cope with the loss. Have to get some blood-work done again, but waiting till I can walk that far with my rollator (2 miles each way). Money’s tight; but the roads are melting, so soon I’ll go. If I sit and rest every few minutes, I can do it.
So I’m sticking with the 2nd Doc, and it’s sure a relief to be treated like a human being, and be listened to, and actually communicate about my medical condition, and I told her so. And if I could still lift my foot, I’d kick myself for wasting 12 years of my life on 1st Doc.
AnonymousMarch 13, 2010 at 10:51 pm
Hello! Initially I was diagnosed w/GBS. But because it took 3 weeks from tingling in fingers and toes to eventual paralysis, the neuro wasn’t sure if it was GBS or CIDP. (Also, I didn’t need a ventilator and left the hospital after 10 days walking w/a cane.)
I got so frustrated w/recovery and how long it was taking (and that was after only three months – ha!) that when I went back to the neuro, he changed my diagnosis to CIDP, and we began another round of IVIG.
I couldn’t tell if the IVIG was “working.” It certainly didn’t catapult me into better health like it initially did when I was in the hospital. I received IVIG regularly (every 3 months) for the next nine months, Then I realized I was feeling better right before I was to receive my next round of IVIG. (My diagnosis was then changed back to gbs.)
It’s going to be up to you to determine if the additional rounds of IVIG are working. If they help, you have CIDP. If they don’t, you have GBS. It’s as “simple” as that. But it was really hard for me to tell because I so badly wanted something to make me feel better. AND, if you have CIDP, the neuro will continue to see you. If it’s GBS, the neuro can do nothing more, and you’re released back into the world of primary care dr.s (who know even less than the neuro’s!!)
It’s been 2 years now and I still need to be careful w/how much I “push” myself! If I push beyond what my body says is ok, I need to “recover” from pushing myself. If I take realllly good care of myself, I could probably be considered 80% recovered.
Don’t assume that anyone in the medical field knows more than you about your own body!! Treat yourself well (eat right – no sugar, low carbs – rest ALOT, exercise lightly and stop before you’ve exhausted yourself), then see if you’re not progressing.
Best of luck and health to you!!
diagnosed w/GBS, Jan ’08
re-diagnosed w/CIDP, April, ’08
re-re-diagnosed w/GBS, Jan ’09
AnonymousMarch 14, 2010 at 10:38 am
Gale, did you have an abnormal EMG/NCV and spinal tap?
Noone has even given me IVIG because I have not had a spinal tap and my EMG/NCV’s are normal. The problem is that I feel like I am getting worse in some way with the tingling, not so much numbness, but muscle twitches, nausea, fatigue, and burning pain that moves around and is all over sometimes. It is very miserable. The neuro is running more blood tests and wants me to do a cervical/thoracic MRI, but I am sure that these will be “normal” too. Whenever I have asked about IVIG, they told me that insurance companies won’t approve it and that it is $20,000 a treatment.
AnonymousMarch 14, 2010 at 11:42 am
My daughter cried in the night for about 2 weeks but had no clinical signs and then one day, she woke up with a limp and later in the day was paralyzed and unable to even stand. We carried her everywhere for about 2 weeks and the doctors said she could walk but was refusing and we said, no she cannot even stand up. It started to go up her body and eventually hit her hands and swallowing. She was admitted to the hospital about 2 1/2 weeks after paralization and they did every test and finally figured out from nerve conduction and spinal tap, GBS. Five days of ivig and went to rehab where she relearned to sit up, crawl, stand up and walk with a walker over a period of 3 weeks. She came home and started walking short distances around the house and then had a relapse and they still called it GBS. Several relapses later, and 5 months and a different dr. and they called it cidp. The only difference i see between us and other cidpers is that we have a definite cause, a virus, and she had to completely learn how to walk again over a period of months. Hope this helps someone.
AnonymousMarch 14, 2010 at 1:46 pm
Hi Jessica: Your symptoms sound like residuals to me. It is not always easy to tell the difference. Usually GBS starts suddenly and progresses very quickly, with often a quick recovery. CIDP usually begins and progresses slowly and recovery is much slower as well. With CIDP there can be episodes of demylineation while with residuals this does not occur. There are several tests that might be done, inlcuding spinal tap and nerve conduction tests. If you have residuals IVIG will not help, whereas it would help an episode of CIDP.
The main thing is that with residuals there is no getting weaker-no matter that your symptoms come and go and can get more severe there is no more demylineation. I know residuals can be scary and confusing and they certainly can get worse, but remember when you had GBS and got progressively weaker-for some of us so weak that we were paralyzed. That should not happen with residuals. Increased pain and tingling or burning are residuals-watch out for progressive weakening and if you think it is occurring I would insist on more tests for your neuro. Jeff
AnonymousMarch 14, 2010 at 3:26 pm
Jeff has some very good advice. There are some new techniques going on that I have read about where they are giving TWO loading doses of ivig to GBS patients as protocol has always been just to give one. Sometimes people need two to stop that initial attack. Also, I am shocked that a doctor would deny you a treatment based on the cost. I have a hard time believing that one tx of ivig would be $20,000 unless you are a huge man and even if it did , you should receive that best tx possible.
March 14, 2010 at 10:55 pm
Yes the cost is high, for 20grams including supplies,drug and nursing it is $7,684 that bcbs pays out, a discounted amount, the original bill was a little over 20K Money really should have nothing to do with it regarding your doc worrying about the cost. The only thing I can think of is that he seems to be going down the road that you don’t have cidp and he does not even really commit to a gbs dx. I think yopu already feel that a new doc might be in order. I was thinking, instead of jumping doc to doc, could you possibly do a trip to MAyo in the summer? The kids could hang out at Mall of America w/hubby, or do water sports. This way if it is not cidp, they will figure out whatever it is and have every doc at your disposal, all in one place. Then you can come back w/ a dx and the doc you have here will work from the directives of the mayo docs. You have multiple things going on now, gastro, hormones gbs or cidp. It is becoming complicated to figure out where to go especially that this current doc is not to helpful.
AnonymousMarch 15, 2010 at 10:20 am
Thanks all for the feedback.
Jeff, I don’t seem to be getting weaker. There are times of the day when my arms seem weaker and such, but I just wonder if it is residual weakness. Sometimes I feel like my thigh muscles are weak when I go up stairs, but I don’t know if it just worry. Every time the neuro checks me, there is no weakness. My fear is that 3 months from now or whenever, I am going to get weak again.
Dawn, I have considered a trip to Mayo many times, but am worried about the cost, and leaving my kids. It probably would be best for my husband to stay with them and I go alone. My concern is that it would be a wasted trip. They would say you have residual GBS or fibromyalgia and there is nothing that we can do for you. You are right in that noone has offered me treatment, ie. IVIG, because they are not sure that it was GBS due to no spinal tap and they do not think it is CIDP. I did not get the proper treatment/diagnosis in that 3 week window period, and I am paying for it now. I am not ready to accept that I will have to live like this for who knows how long. I am sticking with the NW doc for now, waiting for the results of the blood tests and going to the MRI’s of the cervical and thoracic. I am very upset that my health has been ruined by this vaccine and noone can diagnose me or help me. I just keep living my life as best as I can, but it is very difficult and I am very depressed about the whole thing. Thanks all for the support.
March 15, 2010 at 11:38 am
Mayo would probably be covered by insurance. Not sure, well, I am sure, everyone will agree with my next advice, but…many people who cannot get a dx the conventional way, which you have tried w/.wxception of l/p (ncv/emg, normal, skin biopsy, normal, clinical presentation NOT NORMAL) have to consider the sural nerve biopsy. Just my mom opin ion, but I imagine that those with the most problems with healing were either on cell cept, imuron or something or steroids which would make things more difficult to heal. Some do just fine, no problems. Maybe you could start a thread like that asking how people healed from biopsy and if they were on imuno supp.
The nerve biopsy would pretty much seal the deal. It would show if there was ever a demylienation that took place which would be gbs or if there were several demylienations w/healing in between which would be indicative of cidp. This not knowing is killing you. You would learn if you did have gbs or cidp for sure, it would take care of the ambiguity regarding your weakness being residuals of gbs or possible cidp. You would know either way.
About the depression, I think it is one step past the denial, you realize something is wrong, you are not denying it, now you are sad and that is to be expected. Being past denial is one step closer to acceptance, you just have to figure out what it is you are accepting. Three years post and I still get depressed. What about the candida route? Candida causes depression because all of the neurotoxins that are released stop necessary mineral prod/absorp. as well as hormonal imbalances because of taxing the secondary defense mech such as adrenal pituitary etc.
Keep us posted
ps, was ms r/o?
AnonymousMarch 24, 2010 at 1:33 pm
I don’t check this site very often, so I am sorry for the delayed response!
I’m with the member that says the cost of IVIG isn’t the dr’s concern! Your dr sounds unethical to me.
I was a highly functioning healthy 44 year old woman that had tingling in hands and feet and was walking like frankenstein. My primary care dr told me to take 2 aspirin and call him in 2 weeks if I wasn’t better. In 2 weeks, I was paralyzed and in the hospital (and never called him again!!!). Through this bout w/ GBS I’ve learned that dr’s know very little, much less than they let on, and my health care is in my hands!
I don’t care how long you’ve had the tingling and weakness. GBS/CIDP are both autoimmune reactions and what the IVIG does is change your body so that it is no longer attacking itself.
If your dr gives you a diagnosis that requires IVIG, then you should have no trouble getting your inurance company to cover the cost of IVIG.
I’m so tired of dr’s thinking that people’s symptoms are “in their heads”. I think that’s a dr’s code for, “your illness is out of my league and I can’t admit that I don’t know that!”
The worst that can happen is that you get IVIG and it does nothing. But the best thing that can happen is you get IVIG and your body responds and you feel better.
If this dr won’t give you ivig, if it were me, I’d move along to a more compentent Dr. (and keep looking until I found one!!).
Bernie Seigel wrote a great book that talks about healing. He mainly dealt with cancer patients, but the healing aspects apply to anyone with any illness. He talks alot about healing and the dr/patient relationship. The name of the book is: Love, Medicine, and Miracles. I have a feeling that once you read it, you’ll be looking for a new dr.
Unfortunately, it will be up to you to determine your path of healing and not your dr, because he’s not going to do it!
I’m sorry to rant. I am so extremely disappointed in our health care system. I wish you all the best and relief from any pain you have.
AnonymousMarch 24, 2010 at 2:31 pm
Thanks for the support Gale. Believe me, I am none too pleased with our health system right now either. The first neuro patted me on the back after the second visit when my reflexes were diminished, and said “You are going to be fine, see you in 2 weeks.” I went back 4 days later and my reflexes were gone. At that point, he suggested a spinal tap, but told me I would have to lay flat for weeks if I got the headaches. I left him and went for a second opinion, but by that time, my reflexes came back.
I understand that IVIG is expensive, and can cause serious side effects (some of the drs told me kidney failure), but you are right, why can’t they try it to see if it would work? I think that because my case was considered mild, they weigh the risks of IVIG with the symptoms, ie. if you are paralyzed, etc. I still am not sure why I am on my 3rd neuro, and still no spinal tap. Enough ranting for today….
March 24, 2010 at 6:25 pm
About the spinal, yes, you will have to lay flat, for the day, not weeks. About the ivig, yes it can cause kidney failure if you are diabetic and given a brand that stabalizes with sugars, octagam uses maltose for example.. You also could have kidney failure if you were using a sugar stabalized ivig and blood work was done and there would be a surprise glucose elevation. That would happen because the doc did not order the specific test, glucose specific I think and then they would think you were in diabetic shock and administer insulin. You know to ask about it now so that would not happen to you. Another way is if you were not well informed and did not know to ask for a test to see if you are allergic to ivig. You also know from coming here that you should start at a slow flow rate and max out at a certain amount as calculated by the pharmacist according to your weight (even lower if you have reactions0 So now that you know more than the doc that said you could go into kidney failure, you don’t have to worry.
One last thing about the spinal, If it is gbs, it is too late, more than likely your protein level is close to normal. If you are still having symptoms and maybe some new symptoms, then it might be a good idea to get one. If it is cidp, you would have an elevation. Typically, some people ARE not typical!! You have numbness, tingling, tire, some times weak no reflexes, but on the other hand you had a normal ncv/emg, that is what makes you a difficult dx. So you could maybe start with the l/p or just get it over with and do a nerve biopsy. That is really the only way you are going to know!! Good luck!
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