CIDP and Pain in Legs andTrouble with Vision

Chaya, I’ve also had pain in my legs for the past few months. It is not severe in my case and not there when I rest. I’ve been wondering if this could be caused by the additional unusual strain I put on them walking around a lot and trying to keep my balance.

Chaya,

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.

Jerimy

Hi, Chaya.

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!

Deb

Hi, Chaya.

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.

Keep fighting.

Deb

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.

Hi, Chaya.

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,

Deb

chaya,

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.

Take care
Dick S