New here, possible CIPD
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May 17, 2008 at 4:24 pm
My symptoms started 13 years ago with tingly feet. I then progressed into tingling all over and getting severe muscle pain whenever I got a cold or flu. I originally had gone to 4 Dr’s and 2 Neuros. Both neuros didn’t tell me much, one said that I was just a person who felt pain when I got sick. One of the other Dr’s pretty much summed it up by telling me that if I had tingling sensations, and if I didn’t have MS or ALS…well then it was all in my head. The other Dr’s all gave me antidepressents (which I quit taking…as they made me depressed) or told me to meditate. I wasn’t high strung, but that was the course of action that they all chose to follow. I didn’t bother going to more Dr’s as I just didn’t feel that it would be beneficial. Obviously that was my mistake. Then abt 5 years ago I had gotten worse. The pain was so bad and I could hardly move. My husband had to help me dress and bathe. I saw a new Dr. He diagnosed me with Fibromyalgia. He gave me pain pills (neurontin, which didn’t touch the pain) and muscle relaxants. Since I finally had gotten a diagnoses I gave up trying to figure out what was wrong with me, especially since I fit into the fibro symptoms. Unfortunately I continued to get weaker. I saw my Dr last fall, but he didn’t know why I would get weaker. During this time, I had discovered that all of my symptoms were also hypothyroid symptoms too. There are Dr’s who believe that the majority of Fibro patients are actually undiagnosed hypothyroid. I strongarmed my Dr into letting me see an endo. My thyroid test results put me into the “sub-clinical” category. Most Dr’s won’t treat subclinicals, but my endo must have been feeling sorry for me and gave me some meds. I was able to use the type of thyroid treatment that I wanted to use (the type that some Dr’s believe will “cure” people of their fibro). Lo and behold, the majority of my symptoms went away, PLUS I was painfree for the firsttime in 13 years. I then had the best 3 months of my life.
The end of Feb I got a fever which lasted 4 days. By the end of those 4 days I could barely walk. Because I had been like this before and seen the Dr before and he just told me that it was fibro, so I didn’t bother seeing him this time. I then got sick with the flu a week later, plus my husband had gotten sick so we couldn’t have made it to the dr anyway. By the 2nd week of being sick I could use a walker, barely. 3rd week, the walker went better. By this time I called the Dr as I wasn’t coming out of it as quickly as the past years. He saw me and proclaimed something was wrong with me…duh. He sent me off for an EMG. That was so painful and I got a scar from it. There was no connection between my muscles and nerves. I was sent to a neuro. He basically said that I didn’t have ALS or MS as I have had this for so long, he sent me to his partner. He believes I have CIPD. The next neuro did another EMG, which showed up inconclussive for demyelination. I just did a spinal and am waiting for results. The neuro though has repeatedly commented that because this has gone on for so many years that all the testing will probably not be conclussive for CIPD. He wants to do a foot nerve biopsy but I have just said no so far as he said that it could also be inconclusive too due to time of illness. The neuro believes that it is CIPD.
I can use a walker and walk. I can touch someones arm and walk, I just don’t have the balance and strength to walk alone. I can walk around the house ok. Without the foot biopsy, I doubt I will be treated. I do believe that I am ever so slowly getting better. I discovered at the end of April that I had a UTI. Looking back, I believe that this is what I got sick with the first time at the end of Feb…I just didn’t have typical symptoms. After I was treated for that I felt so much better. I am just getting depressed as it has been 2 months now since I could walk normally.
Hopefully next week I will get my spinal result…I keep on hoping it will show something.
Has anyone else been undiagnosed so long and gotten any better?
Thanks for listening
Kristin -
May 17, 2008 at 10:25 pm
Hi Kristin,
So sorry this has been going on for so long. Many people on the forum have gotten the biopsy and regretted it because of the permanent pain and the time it took to heal. If you do indeed have cidp, the fact that you have had it for 13 years with no treatment, would probably say that it is the progressive varient, meaning that you slowly get worse as opposed to the relapsing/remitting type that my son has. Both kinds use ivig to stop the demylienation process. Progressive seems to react not as quickly as the relapsing type. The relapsing kind acts quickly, my son went to a almost paralyzed state with autonomic responses in about 7-8 weeks.good luck and best wishes.
Dawn Kevies mom -
May 17, 2008 at 11:03 pm
Kristen,
I suggest you quit fooling with the local Md’s and get to a Hospital that specializes in neurology. As in Jefferson in Philly, or John Hopkins in Baltimore. If you are in central or western USA there are great ones there also. Beleive me, it is worth the trip. Then you will get to the bottom of the problem. Good luck. I’ll be praying for you.
Mary Ann -
May 18, 2008 at 1:24 am
Kristen
My situation and the length of time to diagnosis sounds alot like yours; except that the neurologist finally settled for an “idiopathic sensory neuropathy of the dorsal root ganglion”. A couple of years later, he decided it was CIDP. Keep in mind that both of these are just descriptions of symptoms! :rolleyes:
But — Dawn is right. There are only a few therapies that work for these nerve disorders – IVIg is one of them. Steriods is one of them. Since you have pain — various pain medications – you are already familiar with neurontin.
You need to find a Doc who can settle on a course of treatment. You don’t necessarily need the biopsy, it has become increasingly discredited; there is actually quite alot of research on that as well — perhaps someone on this forum has something. The thing is – there just isn’t a real range of things to help. So, getting a definitive diagnosis isn’t necessarily going to make any difference to how you are treated. It may make the difference in insurance of course.
Take care and come back here – there is so much information and support.
Debs
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May 18, 2008 at 9:58 am
Thanks for the responses. I do appreciate them!
I have a few questions.[QUOTE=Dawn Kevies mom]If you do indeed have cidp, the fact that you have had it for 13 years with no treatment, would probably say that it is the progressive varient, meaning that you slowly get worse as opposed to the relapsing/remitting type that my son has.[/QUOTE]
In the past I’d recover more quickly and get back to normal life, this time though is not quite so quick. Is there a place where I can read about the different variants? I am being a bit thick as to the difference between progressive and relapsing. I realize that progressive means on-going, but relapsing could mean that too…if a person relapses a lot.
[QUOTE]I suggest you quit fooling with the local Md’s and get to a Hospital that specializes in neurology.[/QUOTE]
Obviously my comments didn’t clarify who I am seeing now. I am seeing a neuro that specializes in CIPD. I know he use to be at the U of Mn and has papers with Dr Parry. Now he is part of a neuro clinic in the area.
[QUOTE]You don’t necessarily need the biopsy, it has become increasingly discredited; there is actually quite alot of research on that as well — perhaps someone on this forum has something. [/QUOTE]
I’d be interested in reading this info if someone could send me the info. I just don’t see the need to maim myself with potential problems for something that probably won’t, according to the Dr, give me results due to amount of time from onset.
Thanks so much for responding everyone!!!
Kristin -
May 18, 2008 at 10:24 am
Hi Kristin,
Regarding the nerve biopsy. Most here do not “rejoice” about getting a nerve biopsy. But there are a few who have had no consequences, I think member Dick S has had it with no consequences. Ultimateley, it is your decision. Everything I have read says a nerve biopsy WOULD INDICATE CIDP CONCLUSIVELY. If there have been demylienations and repairs over the years, each episode would be indicated by a layer. It is compared to an onion and called onion bulbling. So each layer on the onion, or biopsy, is a time that you had an episode and then got better. If there was no onion bulbing, then it would not be cidp because the layers would not be there. You have to understand, this is just a mom reading and learning from this site, so you have to take it with a grain of salt and listen to all the info from everyhwhere.
Regarding relaps/remit and progressive. The easiest way to explain it is to think back years ago how fast you could get up the stairs, or how much you could garden, or how fast you could mow the grass, and compare it to now and figure out if these things take longer or are no lkonger attainable. Has it slowly crept up on you? Now, is it harder to do these things? Relapsing remitting works like this, with each person having different time schedules. Let’s use Kevin, he gets ivig once a month loading dose, probably could go three months, symptoms start appearing at 4-5 months. Kevin is lucky, he goes pretty long, now others, can go only a week without relapsing. The remitting comes in when ivig is given. So once you figure out a schedule of ivig, you will not relapse, the ivig holds you and you get a chance to repair. incidentally this happens about a mm a day. I think my math is right, the way I figured it, you can heal 14.37 inches a year if there is no relapse. Once you feel symptoms, you have relapsed and start the healing back to zero.
Ultimateley ivig or steroids (we do not use them) are the first line of defense. If these do not work, there is a protocol that follows, pp, ppw/ivig, cell cept, imuron etc. Contact the foundation and they will send you an amazing packet with detailed info. Good luck!
Dawn Kevies mom -
May 18, 2008 at 5:15 pm
Thanks Dawn for explaining so well that I understand what you meant by progressive and relapsing.
As for what my neuro has told us abt the biopsy and possible lack of results… If I remember correctly he said that the longer this has gone on for the more chance for axons to get damaged and the myelin will just be gone (and no layering will be evident..hence the results would be inconclusive for demyelination). We will be hopefully hearing results this week on the spinal and then go on from there.
I haven’t felt good since the spinal. Whenever I lay flat on my back I get severe tingling and shooting pains from my neck going up into my head. Today, they are less severe than the past 3 days, but now I notice I have a slight fever (99 degrees). Hopefully this isn’t from the spinal…I never get sick, so I hate it when I do.
Thanks for giving an explanation that I could understand!!!
Kristin -
May 18, 2008 at 8:07 pm
Here is a link to an old journal article on this site. It appears that the “definitive” diagnostic criteria for CIDP have changed quite abit.
[url]http://pcstereolink.com/newsletters/2000summer.htm[/url]
The wikipedia entry for CIDP is also interesting and gives some context:
[url]http://en.wikipedia.org/wiki/Chronic_inflammatory_demyelinating_polyneuropathy[/url]
This study demonstrates that neurologists should be able to identify/diagnose CIDP without the nerve biopsy.
[url]http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=2169919&blobtype=pdf[/url]
Hope this helps. There are different schools of thought around biopsy, obviously – if your neuro is keen to use as a diagnostic tool then you have to decide whether you are prepared to go through it. I haven’t had one myself, so I can’t help on that score.
Take care
Debs
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