Question about CIDP/Kidney Stone

    • Anonymous
      March 31, 2010 at 4:42 pm

      My husband is presently in the hospital receiving Plasmapheresis for the second time in less than 2 weeks. He was doing great following the Plasma…treatments 2 weeks ago until he began having severe back pain. He had an MRI, X-Rays, etc., and the report showed that the Radiologist saw a stone passing. When the Urologists looked at the same films they stated they did not see anything. Anyway, the amount of pain my husband experienced was excrutiating. The following evening, once the pain was finally under control, he was weakened to the point that he was actually much worse than when he was when admitted. It was like all the Plasma…treatments were for nothing. Our question is, has this happened to anyone else before? Can severe pain cause such an issue like this to happen, to have the patient set back from where they were following the treatments?

      He was also told by a neurologist that there is no such thing as having pain with CIDP or MG (he has also been dx. with Myasthenia Gravis). My husband has had a lot of muscle cramping and pain since 2002 when he first experience GBS. In 2003, he became ill again and was diagnosed in 2006 with CIDP.

      We would love to have some clarification on this. Thanks so much to everyone for taking the time to read and respons. Many blessings on all,
      Sharon & Don Hooker:confused:

    • March 31, 2010 at 5:10 pm

      Just a mom,
      Perhaps the pain indeed was the kidney stones. Does he get any other treatment besides the pp he has recently recvd? If he has cidp he should be on some sort of regular treatment, not only when a crisis occurs. Has the pain stopped? Sometimes people get referred pain, the actual site (back where kidneys are) could radiate to other areas, pain can cause weakness. Did he get morphine for the pain, that could be making him feel weak. As well, if 2 weeks have passed it is not unusual to need additinal treatments. Does he get ivig as well? Are they sure he has mg and cidp? What are his current overall complaints regarding numbness, tingling weakness pain etc? The doc is wrong there is pain, it is an inflamatory process on top of the myelin that can go to the nerves. Tell him to look up inflamatory. Not to be mean, but I think he may have an inflamed ego to say there is no pain w/cidp. Why does he think there are drugs specifically targeted to nerve pain? Chronic Inflamatory demylienating polyneuropathy. Chronic=constant
      Infalmatory=pain, burning, fire demylienating=eating away of the myelin polyneuropathy=many nerves. Has he checked out the ninds site.

      Honestly in the 3.5 years I have been here I have never felt so compelled to answer that way, but I am mad that your doc says there is no nerve pain with this disease. I think of my 13y/o, your husband and thousands of others. Looking for anything to take away the pain. Is it possible you misunderstood him? If not, you may want to consider a different doc. I am so sorry to be so negative, I am just so mad for you because you want to help your husband and get an answer like that! PLEASE keep us posted, You are both in my prayers.

    • March 31, 2010 at 5:11 pm

      Something else, about the pp, has the doc tried ivig yet? You may get longer term results with it, or you could get pp imeadiately followed by ivig.

    • March 31, 2010 at 8:20 pm

      Sharon and Don,

      I had kidney stones a long time (years) before I had CIDP.

      And I have not had a kidney stone since beginning Plasma Exchanges (July 2008). This doesn’t mean Kidney stones and PE are unrelated for you, but there doesn’t seem to be a link for me. Initially I had a couple of vasovagal responses to the PE treatments and they would regularly inject calcium. I wonder if you’re Don is getting extra calcium with his PE? As I remember they use the calcium because the PE process somehow locks up calcium in the liver??? (Sorry, I’m just relating what my poor memory recalls.) But the reason I bring it up is that you might want to discuss kidney stones with your PE doctor and see if the elevated calcium might be collecting in the kidneys and causing stones.

      Kidney stones are the worst pain I’ve ever endured. But all in all I think CIDP is a worse condition to bear. I hate to hear y’all are having to endure both.

      I pray your husband will get relief from the kidney stones and they won’t return.

      By the way, Plasma Exchanges have been very successful for me and are currently the only treatment I’m receiving.

      God bless and good luck to you both,


    • Anonymous
      April 1, 2010 at 12:13 am

      I have had kidney stones once before ivig and 3x after.. told it was a sideaffect of ivig.
      No pain with cidp?? yea right.. I have constant pain. Maybe the Dr. should live with this disease for a week!!
      Take care and keep the faith for a cure!!

    • Anonymous
      April 1, 2010 at 5:26 am

      I feel like a broken record but “get a new doctor”. Your doctor obviously does not have the full picture of CIDP (trying to be polite) if he assumes there is no pain. For SOME people there is no pain, however for MOST people it HURTS to have your nerves scraped raw, it hurts to have electrical volts shoot any-which-way into your muscles causing them to spasm and cramp like never before, and it hurts when you aren’t getting the best treatment due to your doctor’s lack of knowledge. Yes PP can cause kidney stones, if for no other reason than dehydration but the medications can be rough on you as well, IVIg can also cause kidney stones due to dehydration and the clumping tendency of the Ig, and also diet can cause them. I once knew a girl who had repeated kidney stones – come to find out she ate a LOT of Tums to keep her stomach acid under control – well those things have TONS of calcium which in excess can cause kidney stones. There are many reasons your body creates kidney stones but because of that I am surprised they went ahead with the second PP. I was told I was NOT a good candidate for PP because I had kidney stones and kidney infections as a teenager and under no circumstances should I have PP if I have kidney stones.

      I was not given the same caution for IVIg but probably should have been. IVIg caused a great deal of kidney pain for me, they barely worked at times and now six weeks after stopping IVIg they are just now starting to perform the way they should. I am on sub-cutaneous Ig now and so far have had no kidney problems.

      I am not surprised the pain crushed him – it does that to me too, and if your husband is fighting two neurological diseases it does not surprise me at all that an event like that took it’s toll on him. We are not what we once were… able to rebound from traumatic events in a single leap. 😮 And just so you know I was also diagnosed with MG at first because of the facial paralysis and a tendency to go downhill after repetitive actions. Later, 18 months and 14 doctors later, my current neuro determined that I have myasthenic” tendencies but I do not have MG itself. Do you have positive blood test results or just positive repetitive stimulation tests? I’m just curious, and nosy…

      I am sorry your husband is going through so much trouble right now. I think it must be harder on you all than on us – I am usually too miserable to feel sorry for myself so my husband does that for me. I wish I had some advice for you besides finding a new doctor, I know what a daunting process that can be, but finding the right doctor and getting on the right treatment protocol got me from 90% paralyzed to puttering around planting flowers yesterday in my braces.


    • Anonymous
      April 1, 2010 at 7:56 pm

      i had a kidney stone and was told i could not have IVIG until my urologist cleared me. Now the stone is gone and i am waiting on medicare approval.
      I am getting frustated that this is taking so long. I am in touch with my neurologist i am supposed to have IVIG 3 x a week for 3 months.(8 hours a day) I have visited the infusion center and am contact with the infusion nurse. I guess we are just waiting on medicare. does anybody know if this is normal procedure.

    • Anonymous
      April 1, 2010 at 9:07 pm

      For me the issue wasn’t kidney, but gall stones! I’d commented to docs about this ‘pain’ for years prior to onset? But test last year came up clear and true that it was Gall problem..likely a big one? Yet, not one doc has said: STOP the ivig nor done one whit of follow up on this issue!
      Get copies of those test results, or at least the summaries? Plus copies of all tests done so far and go get a second opinion [IF you can?] ASAP! A second opinion is truly cheap compared to complications or problems resulting from inadequate treatments. Good testing WILL tell if they are related? But I truly doubt that they are directly ‘connected’.
      To me? Prolonged kidney pains are more likely due to some immune issue going on there and thus further testing is essential!
      I have to say that any doc who says ‘there is NO pain from CIDP, GBS or MG’ is really outta touch with his patients [as in NO CLUE]! Therefore, one to be avoided! I interviewed others and got a good one? Who did all the right tests and then some! I consider myself lucky for that? And, that I got the treatments I needed.
      My heart is with you on this one. It’s not easy to get appts nor get him around to all the docs? But if you do? I suspect that both of you will have a better life, and quality of life! Please ask questions of all of us! We each come at this from different experiences and approaches. We tend to try and get on with life? Tho it mite be different from ‘before’? We still try and go and do! Hugs and hope!

    • Anonymous
      April 3, 2010 at 10:10 pm

      perhaps it was adrenal gland located just above his kydneys. that can happen in inflamatory process. anyway I get that pain after my body disagrees with things I come in contact with. or it could be the plasma pherisis and his kydney. when I did PE last time, it sucked all the calcium out of my blood and then they gave me IV calcium citrate but what they didnt catch is that they were also giving me 100 mg of prednisone and gabapentin on top of a severe vitamin D deficiency, making it impossible to reabsorb this calcium. Calciums #1 job in our adult body is neuro electrical conduction and neuromuscular contraction. magnesium works opposite calcium. if too much calcium and too little magnesium are in use then disautonomia can occur.

    • Anonymous
      April 3, 2010 at 10:30 pm

      😀 Thanks to all of you for taking the time to write. As far as the neurologist is concerned, my husband and I fired him and the nurses would not allow him to reenter my husband’s room. They told him he was no longer to be our hospital neurologist. We were so grateful to them for doing that, although we were prepared to take care of it ourselves.

      Don does not appear to be responding to IvIG any longer. No sure what our Hematologist will do, but for right now, he is only doing the PE. I am planning on spending tomorrow evening at the hospital so that I will be available when he comes in on the early morning rounds to see what his plans are for Don. This doctor has told us that Don has all but one of the criteria showing MG. I have not been told of any labwork, although our regular neurologist has told us that she felt he had MG as well as CIDP. Just no labs yet.

      All of you just made me feel so good. I appreciate your freedom in letting me know the anger and frustration you are not only feeling for this terrible disorder but for our situation as well.

      Many blessings on all of you. I will discuss your questions and concerns with my husband the our doctors.

      I just pray that they will wait until Don is able to maneuver by himself before releasing him home. I am a one year cancer survivor and am facing bilaterl knee replacements in the future and am just not able to tend to Don like I once did. We are looking for assistance in the home, which will be a much needed blessing for both of us.

      Again, thanks for taking the time to share your thoughts and concerns with me.

      Wishing many blessings and grace on all,
      1 Blessed Lady

    • Anonymous
      April 3, 2010 at 10:48 pm

      Don has been on Rituxen, worked for a while, but began to have same response as with IvIG – nothing. It acts as though his body had become immune to the two drugs. He is on Neurontin, Hydrocodone, Lyrica, Baclofen and Midodrine. The baclo..and Mido…are due to back spasms and low blood pressure, respectively.

      My husband did receive Morphine for the pain, however, the shots did not respond. The nurse finally called in and gave him two other injections, of which I can’t recall the name, and these finally kicked in and helped alleviate the pain much better.

      I do am not aware if he is getting extra calcium with his treatments. I thought I had been doing pretty good in staying on top of things, but now I realize that there are still so many more things I need to find out.

      I know I have overwhelmed our precious Hematologist with questions, and I feel at times he just doesn’t know what to say. However, we both appreciate him for being up front and frank and just simply telling us he is not sure of an answer at this moment. But he always reassures us that he is looking for answers.

      again, thanks for all your help. I trust that some day I, too, will be able to provide sound advice as all of you have done for me this day.

      1 Blessed Lady