I think that the advice about the spinal tap is a great one. Taking him somewhere great is also a good recommendation. Most doctors know nothing about severe GBS. I have been reading that the newest thinking is to give SEVERAL rounds of ivig to some patients with severe GBS. Our doctor told us of a story of a man who was on a vent for a year with GBS and got off and went for intense rehab for a year and walked into his office and shook his hand after the two years. There is hope if you can find the right diagnosis, tx, doctor an rehab. Best wishes
You do sound like you have symptoms of cidp. What is the doctor saying now? Most of the people on this forum do not have any family members with cidp. If your doctors does not know after the last serious of test he should maybe do a spinal tap and that would help with diagnosis. Please keep us posted.
I have hope after reading your post. At least your doctor is trying to get a dx, some doctors would drop you off at the curb! My daughter in also neuro/rheu as she has cidp and arthritis from Fifths disease which is the virus that caused the cidp. She gets ivig and her neuro says that will take care of the cidp and the arthritis and IT HAS. HE is a genius. The rheumatologist is amazed that ivig has helped the arthritis. She is speechless.
My daughter is sitting here and we are going to pray right now that they figure out what is going on with you!
Love your screen name, its pretty much covers what alot of us go through gettting that darn confirmed diagnosis. Read over your post, Sure sounds like
CIDP. The spinal taps take 6 or 7 days to get a final culture result, Like Kelly said EMG’s are instant and should be done by the Neuro not a tech.
Back to the spinal tap, mine was neg. I have multifocal CIDP. Hitting the criteria is important, in my case I had lots of focal blockages, was negative on HNPP(heredetary Neuropathy with tendancy for pressure palsey). Spots on the brain. I had negative or worsening with Prednisone. They waited til
I was sliding down the steps on my butt before they did a trial of IVIG. That worked.
The doctors always seem wooshey washey until they see you in severe distress. If left untreated CIDP can put a hurtin on ya. If it affects breathing, and the autonomic system, It can put you down.
We all become disgusted when we see the same things happening with others that happened with us. So with that said. I wish you luck. If you don’t trust your Doctor, get another but I suggest not having too many doctors involved at once, it slows things down.–Tim–
Mine was a long journey of missteps, mostly due to the fact that I have a lot of disc problems related to a waaaay too active and high-risk of a lifestyle. Aside from the normal lower back stuff that all of my family seems to have been afflicted with (we’re all athletes!), I’ve also just beat myself up over the years, concluding with a pretty terrible face plant while skiing in the early 90s. The long and short of it is that I have a tremendous amount of back pain aside from the symptoms associated with Mgus. That’s made a clear diagnosis tough. It’s also been tough, because as you all know, many health providers just don’t know the condition, don’t look for it, and tend to get side-tracked by more obvious lines of inquiry. Still, I knew that something wasn’t right. I couldn’t articulate what that might be, but I just knew that this wasn’t just about my back. Ended up making me feel like a village idiot at times, but I’m mostly a very self-confident guy who is secure walking in unknown territory. You could say I’ve thrived most of my life in that environment. Still, it was good that I had a few doctors who respected and supported me.
The first diagnosis of Mgus was about 3 years ago. A fairly high reading on the Electro-pheresis (or whatever the heck that expensive blood test is called!) of an m-spike. Had an immediate biopsy, but that came up negative (thank goodness!). Still, it was believed that my symptoms were being caused by arachnoiditis. While I may have some mild arachnoiditis in my back, my symptoms were always too diffuse to be simply about spinal intrusion. I knew that…. but they didn’t.
Basically after that test I began a journey of trying to find out what was going on. In frustration, I finally went to my neurologist (a wonderfully intelligent, professional, and compassionate physician), read her the riot act about feeling like I’ve just been dropped in the middle of the desert without a map to get home. She felt very bad, promised that we would see this through, and sent me to the UW where two physicians are conducting ongoing studies on nerve-related conditions. One of them saw me for all of two minutes and said, “we could do a biopsy on a nerve if you’d like, but I already know what you have–I’ve seen hundreds of these cases and I can tell you that you have a small fiber neuropathy that is caused by your Mgus. You may have other underling unrelated conditions, but this is the one that is making your life miserable.” One of the more interesting things that came of my conversation with him, btw, was the fact that they are nearing the end of their study and preparing to publish. They both believe that Mgus is far more widespread than the medical community is aware and that there are quite a few people walking around with the condition with very mild symptoms who simply don’t know they have Mgus. That was interesting.
Anyway, that was pretty much it. He basically said there is no known cure and no real treatment for the condition. Plasmapheresis is contra-indicated because of a wide-range of issues related to monitoring the condition, understanding when there are high levels of the protein in my blood, and very strong questions around its efficacy, etc. Rituxan isn’t indicated because it is incredibly expensive, tightly controlled by the pharmaceutical company, and not approved for my condition. I can’t afford to pay $50,000 per dose (even if the drug company would go for it), my insurance company definitely wouldn’t cover it, and the docs won’t even try because they don’t believe it will work AND the company wouldn’t give it to me. If I developed cancer as a result of the Mgus, THEN I’d be eligible to give it a try. In short, he basically said that any approach to ridding my body of the condition has a steep downside. I don’t know if I believe that or not, but right now I’m just not in a good position to challenge anything.
Frankly, I’ve pretty much given up and accepted my fate. It’s taken 12 years of fighting desperately with my health providers to get answers. Now that I’ve got them, I’m just wrung out. I don’t have one bit of fight left in me. The best I figure I can do is to try to handle this decline with class and poise and try not to be a burden to those who love me. Everywhere I’ve gone I’ve run into walls. I’ve spent my entire life running through walls, but I’m tired, deflated, and, honestly, I just don’t care anymore. Yup, I’m depressed, but I can’t even take anti-depressants because I can’t tolerate them. Just another gift from my Mgus.
That’s basically it. Hopefully with a little time I’ll get some fighting spirit back, but right now I just want to catch my breath and try to get re-centered. The process of discovery in many ways has been far worse than the disease. Not sure what that says about our medical community.
Anyway, sorry to be so darned negative. I’m not usually like this at all, but I’m in a down period at the moment. I’ll buck up, find my center and become that wildly irreverent guy I’ve always been! Hugs to all. Doug
I think the large majority of us on this forum have been misdiagnosed in the beginning of our illness. First off, I had a very unusual cold that lasted 3 months prior to my CIDP. My GP dismissed my 3 visits as merely a normal cold, even though I kept telling him that it felt different. I never even got a chest x-ray or blood workup done; if I had he would have known early on that I had walking pneumonia. Later on when I went in to his associate with numb hands & numb feet, he told me that it was merely anxiety. It wasn’t until my knees were giving out that they told me to go to Duluth, MN.
In Duluth I had a spinal tap & was told I had the “mildest case of GBS that they had ever seen.” I was given 5 PP treatments & sent home with a walker. Each day I lost more feeling & strength, & my husband would call the neuro on call down there, but we were told to wait it out. Within a few weeks I had no feeling below the neck, had lost the ability to walk completely, could not raise my arms, & had no use of my arms. I was then taken 5 hours by ambulance to the Mayo.
I often wonder what my condition would have been like had I had the IVIG before I got so bad. IVIG never helped me to get better, but once I got it I never got any worse. I was at Mayo 6 weeks before my dx was finally changed to “one of the worst cases of CIDP they had ever seen.” My point is, I believe most of us have horror stories at the onset of our illness, unless one presents totally paralyzed.
I don’t know of anyone who has tired suing, but if you think you have a good case, then go for it. Unfortunately with such a rare illness, how could one prove that what the doctor did was totally inappropriate? You might be better off conserving your energy for your job…
The one good thing about them trying you on steroids is that if they work, it might be a good way to find out a true Dx. Steroids usually work fairly well for CIDP, in fact, I know now at the U of MN it is the first course of treatment offered. I was surprised to learn that, but I suppose maybe the rising cost of IVIG has something to do with that?
When IVIG & PP did nothing for me, steroids did give me back just enough function so that I could get out of the hospital (after 3 months.) I had weekly infusions of 1,000 mg of solumedrol for 21 months after that. There was a lot of weight gain, I had cataract surgery in both eyes, a rash all over my body, irritability, sleeplessness the day of the infusions, etc. But at the time I really needed them & my motto with CIDP has always been, “You do what you have to do.”
The most responsible thing to do is to seek out the neurologist and get an evaluation by qualified medical doctors, rather than to seek out clues here from non medical people going on second hand information to guess at whether GBS is the culprit. I wish you well, and your girlfriend well, but please get her to a qualified doctor? Take care!:rolleyes:
You are asking if it is possible to have CIDP even though there is no damage according to a NCS or EMG? Did you have a spinal tap/lumbar pucture with elevated protein levels in your spinal fluid (over 45?) Did you have a sural nerve biospy done to Dx CIDP?
If not, then just what are your symptoms. CIDP usually presents assymmetrically in an ascending order, beginning with the peripheral nerves, such as the feet & hands, then moving its way up. If you have muscle weakness, wouldn’t it show up on a nerve conduction study, as the nerves would have to affect the impulse to the muscle.
I guess we need more information about your symptoms before we could really help you out. Please post more…