CIDP and Pain in Legs andTrouble with Vision
AnonymousAugust 22, 2006 at 7:09 pm
I was recently diagnosed with CIDP. I really don’t know how bad it is or will become. My doctor, I believe, called it a mild or moderate case, so hopefully my prognosis is pretty good. He just received my case (my previous doctor went on maternity leave and will be leaving town, as her husband got a new job), so he hasn’t been able to fully review my case yet. He should know more when I see him in September.
My question is whether severe pain in my legs is the result of my neuropathy, or is it something else. :confused: I have also had severe back pain, ever since I had my spinal tap done (although it was done right where I have a bone sticking out in my back – somewhere between L4 and L5). I also seem to be having problems with my vision. My doctor says that the neuropathy shouldn’t affect my vision. Is that correct? I have had an astygmatism (sp?) since childhood; I also have worn glasses all my life.
Thanks in advance for your response. I am so glad I found this website (my new neurologist directed me to it). 😀
AnonymousAugust 22, 2006 at 8:59 pm
Welcome and glad you found us. If your CIDP is not being treated yet then it wouldn’t be unusual to have vision issues and also the pain you describe. I had both also as I was coming down with CIDP initially, someone told me that the nerve/muscle controlling the eye can be affected. Once you start your IVIG treatment and it has a chance to start working then your vision issues should clear up. The random pains can be a something that comes and goes.
AnonymousAugust 23, 2006 at 2:48 am
Vision problems are normally not thought to be a part of CIDP, so you need to have it checked by your optometrist or ophthamologist. However, a number of us have found that we have vision problems that have no other apparent cause. I developed a blurred spot in my right eye a couple of years ago and all the tests have come up negative; my neuro admits it could be nerve damage in the eye (although not the optic nerve itself).
An important thing when you have odd, not-necessarily-normal-CIDP symptoms, is to rule out everything else before assuming it’s CIDP.
Such a challenging disorder!
AnonymousAugust 23, 2006 at 5:29 pm
Thanks to everyone for responding. I’m really glad I found this website and this forum.
My neuro also thinks that my vision problems aren’t related to my CIDP (they could be caused by my eating disorder). My CIDP may also be nutritionally related (therefore, also related to my eating disorder).
As far as the leg cramps, is there anything I can do about them prior to receiving treatment. Right now, I take Tylenol or Ibuprofen, although I mostly take Tylenol, as I’m not supposed to take any blood thinners due to a bleeding disorder.
One more question. Does anyone know if CIDP has a genetic component?
AnonymousAugust 24, 2006 at 1:50 pm
CIDP itself isn’t thought to have a genetic component, but there is evidence of a genetic predisposition toward auto-immune disorders, of which CIDP is one.
Charcot-Marie-Tooth (CMT) is a disorder with similar symptoms to CIDP, but it is not an aquired disorder like CIDP is–it’s a hereditary disorder.
AnonymousAugust 24, 2006 at 5:34 pm
Chaya, welcome to the family. muscle cramps can be controlled by increasing your water intake and increasing your potassium intake by eatting more bananas, cantalope, avacados and many other fruits. quinine also might help the muscle cramps. fruits and water are healthy and easy to get a faster response to your problems. neurontin helps with the nerve pains along with other meds like antidepressants. take care and don’t over do things.
AnonymousAugust 24, 2006 at 9:22 pm
I am not familiar with CMT, saw something about it in a different post. What exactly is it? My doctor seems pretty sure that I have CIDP.
As far as the leg cramps, my primary doctor told me about quinine and potassium. Getting potassium is a little difficult with the eating disorder (although I will eat cantalope – occasionally). Also, what anti-depressants helped with cramps? The reason I’m asking is that anti-depressants are frequently prescribed for eating disorders.
To Eight Plus Five – thanks for your response and I love the dogs in your picture.
AnonymousAugust 25, 2006 at 3:05 am
CMT is a hereditary neuropathy and usually presents with tingling and numbness in the extremities–just like CIDP. CMT is also suspected when the patient has high arches and, of course, when the same symptoms are seen in other family members. It’s slowly progressive (I don’t think it ever shows the relapsing/remitting course CIDP sometimes does, but I could be wrong), and affects a lot more people than CIDP does. It’s my understanding that, although it can be disabling, it tends to be so less often than CIDP is.
Because I have very high arches and so does my father, I had to go through genetic testing before CIDP was diagnosed. The genetic testing showed I had a 30% possibility of a problem gene, but my neuro didn’t think it was enough to diagnose CMT, so she set me a course of IVIg and when it worked she finalized the diagnosis: IVIg as a neurological test!
On a happier note, the picture is of my babies: the brown one in the front is Jagooti, who’s seven years old, and the other is Harry, my two-year-old. Jag has had back problems (common for dachshunds) which resulted in her needing surgery in April. She’s walking much better now, and in no pain–our vet’s the best–but her backside still wobbles and her back legs tend to do unexpected things. There are, of course, comparisons with how I walk; the difference is that she doesn’t wear splints or walk with a stick.
Best wishes in the battle,
AnonymousAugust 25, 2006 at 11:12 pm
I have had back surgeries at L4-L5 and a neck surgery at C6-C7. Both of them caused numbness and pain, but neither was caused by CIDP. In each of those cases, The nerves coming from the spine were damaged, causing effects to radiate out from there.
With CIDP, the damage is to the nerve itself (destruction of the myelin sheath). So the nerve itself doesn’t function very well. The symptoms may be the same, but the causes are different.
I was really quick to want to blame everything I could on the CIDP. But sometimes it just isn’t the case.
AnonymousAugust 26, 2006 at 10:52 am
I think that the back pain may be the result of the spinal tap. The doctor had to take the tap right around the L4 and L5 region, so it probably aggravated an old problem. I’m just wondering why it has lasted approximately 2 months since the surgery. I also have bone loss and some arthritis there, so that could be adding to the problem.
I’m stil thinking that the pain in my legs may be related to the CIDP. I’ll probably find out more from my doctor when I see him again.
Thanks again for responding.
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