CIDP with sciatic involvement

Hi Ed,
I’m sorry that you have been unwell and in pain.
I have CIDP and have bouts of sciatica (starts low in my back then travels down past my buttocks and then my legs). The weakness in my legs will become more noticeable too.
Mine comes in bouts. I might be okay for a week and then it’s back again for a few days and then it goes away again (I can never tell when it will play up).
When my pain gets really bad it then starts to become a numbish pain (if that makes sense) – I’m not that good at interpreting pain sensations anymore since coming down with CIDP – most of my pain is an electical type pain now.:eek:
I am still trying to work out the best way to manage my pain. I have only been taking paracetamol.
I sincerely hope you find some relief soon.
Yes, it is good to know that there are others here who know what we are going through!
Good luck,
kazza

Hi Ed,
Welcome to the forum. I don’t know anything about the drug you mention, is it in the same family as cytoxan? Several on the site that no longer have results w/steroids, ivig move to the cytoxan. Was your procedure for your leukemia similar to the stem cell harvesting that is in trial for cidp? Maybe the current trial could be an option for you. With the procedure you had, 7 years ago, was it donor transplant, if so are you currently on anti-rejection drugs(imunosuppressants)? Did the marrow transplant and the leulemia treatment put your cidp into remission seven years ago, meaning have you been symptom free of cidp since the leukemia treatment? What does Dr. Lewis want to do? Just an off beat idea, is it possible from all of the prednisone and other drugs from your leukemia that there is a weakening of the bones therefore causing osteoporosis in your spine and compressing the siatic nerve also known as spondylosis (spelling) I think there is cervical and lumbar spondylosis. It presents with numbness tingling, pain, gait issues difficulty walking. I think it also can involve the bladder and bowel. I often wonder if this is an additional component for us as we have constant back pain? It seems like it is difficult to differentiate between spondylosis and cidp symptoms just by “feel” of ones syptoms and clinical presentation unless a diagnostic tool is used. Such as a ncv/emg to see if demylienation is occurring elsewhere. Good Luck, keep us posted.

[QUOTE=Dawn Kevies mom]Hi Ed,
are you currently on anti-rejection drugs(imunosuppressants)?

Just an off beat idea, is it possible from all of the prednisone and other drugs from your leukemia that there is a weakening of the bones therefore causing osteoporosis in your spine and compressing the siatic nerve also known as spondylosis (spelling) I think there is cervical and lumbar spondylosis. It presents with numbness tingling, pain, gait issues difficulty walking. I think it also can involve the bladder and bowel.

Good Luck, keep us posted.[/QUOTE]

[I]Dawn, you make a very interesting point. I had not thought of osteoporosis and sciatic pain. I should’ve, however, as I just had a friend go through this for what must’ve been an almost intolerable period of time before the docs surgically intervened.

Rocky[/I]

Hi Ed
My son Ryan also see’s Dr Lewis, he is such a great doctor. I don’t know if Ryan’s issues are the same as yours but Ryan does get a lot of pain too. he takes 3600mg of neurotin daily, 60mg cymbalata which is also used for pain, ultram, and propoxyphene. its has gotten to the point now that these pain meds dont work anymore he is always in constant pain weather he takes these meds or not.
we are looking into seeing a pain management doctor. someone from this site suggested it and said he might be able to get some shot to block the pain. not sure what that shot is but its worth it to us to look into it. as Ryan doesn’t sleep real good because of all the pain. there are days that he says he wish he could just cut his legs off to get rid of the pain.
as soon as I know if there is something out there that can be given to him to block the pain I will let you know.
Rhonda

Hi Ed,
I am also very sorry that you (or anyone) has to go through this strange kind of pain…, I also started out with Right leg pain (sciatica) that eventually moved to the left leg– and now is more in my hands- both feet and legs being mostly numb. I did have a ruptured L4-L5 disc and had two surgeries to correct. but the rest of the pain is not from that injury– or is it in some way related? many years of pain, but very little weakness– tests all seem to come in ok, reflexes are ok… only the biopsy of the sural nerve confirmed CIDP. Now i have nerve conduction and EMG findings to support the Dx, but for years i have suffered. They tell me I am lucky that to be strong — but the pain is becoming more and more disabling.

My advice to anyone with this disease is to keep searching for what works for you, and keep up hope that the pain will ease up with time. Never give up hope! My feet being numb is a blessing (I just have to be aware of my feet all the time to keep them safe from injury) but how could I wish that on you or anyone else?

I am asking for a trial of Rituxan, but currently being denied by my insurance co. We keep up the IVIG and methylprednisolone- and I finally had to admit that I need pain medication.

Good luck to you and to all of you out there who give me hope. Typing is difficult for me, but i read every word on this forum — THANK YOU TO ALL OF YOU FOR THE ADVICE, THE COMFORT AND THE HOPE!!

Ed,
You have been through so much, you are amazing! Are you curren tly still on anti-rejection drugs? If so, what? Have you had any ncv/emg’S I only ask because IF you were on an imunosuppressant for the rejection of your original transplant, it would make me think that it would be able to keep the cidp under some sort of control. Unless if used as a rejection tool, the suppresants are given at a smaller dose which WOULD NOT help w/ cidp symptoms. I only bring it up because the spodylosis (spelling) keeps coming to mind. You also are on prednisone, that would give some relief with the pain due to cidp in conjunction with imunosup. If it were a compression as a result of osteoporosis(spodylosis) it might not be as effective because the compression is constant meaning the pain meds/steroids could be reducing inflamation on the siatic nerve itself, but the compression would always be there, so the neurot pred could not help with that. No clue about nortyptoline and dosinf, but I do know that you could double the amount of neurotnin (you do not indicate how often you take it, is that an overall amount or a per dosage amount) Have you had a nerve biopsy to show new/old episodes or any other tsts such as ncv/emg, because lumbar and cervical spodylosis can present like cidp clinically. You would only know differently with dx criteria. IF it is cidp and not spondylosis and you already are on all of these imunosup., the cytoxan is an option. The stem cell that is refered to on the site is different from what you had in that they are replacing your own stem cells after a high dose of cytoxan. You get it at once in a shorter period of time as compared to a long treatment. Pam H is a member that had that course and Alice had the harvesting. They could help you with those matters as they are the one’s with the experience. I am sure you are in good hands with Dr. Lewis. You mention that he already has plans of a scan, so he is already thinking about the spondylosis as a result of the steroids I would imagine. You should google it, I think (long time since I read about it) that there are surgical interventions that are done, with mixed results. Usually they start with chiropractic manipulation as you are doing, perhaps the manipulations could be stepped up in a different direction if it is spondylosis. As well, they use massages to relax the areas. I have back issues herniated disks and degerative arthritis that affect my siatica. Sometimes I find more relief from the muscle relaxer than the pain med. The pain med takes the edge off, but the muscle relaxer has a more long term affect. Good luck, keep us posted!