3 questions about CIDP

    • Anonymous
      January 9, 2012 at 2:02 pm

      My doctor told me he thinks I have CIDP on 12-28-11. I have been reading a lot of post on this forum and my symptoms don’t seem to fit CIDP they seem to fit BFS more but my Nuero blow that off when I asked him.
      I have a few questions that I can’t’ seem to find a answer to.

      Did anyone on the forum start out with muscle twitching that moved from one place to all over your body then got muscle weakness and then told they have CIDP? I have no more muscle weakness today than I did a year ago in fact I am probably stronger.

      I know CIDP is different in every one but muscle twitching does not seem to be one of the primary symptoms. From what I read it seems to be pain or numbness then weakness is this correct ?

      Did you have good days and bad ones or was it pretty much all downhill till the point you got treatment ?

      It feels like the whole thing is some sick game of wait and see what happens. I made appointment with another nuero to see what he says but that’s not till the 23. I had to call 5 before I found one who treated CIDP before. If this Nuero is no help I am not sure what I will do the waiting is really warring me down. Maybe I will try and go to the University of Texas, Southwestern Medical School I keep reading they are the place to go if you have CIDP in my area. Problem is I don’t think I have CIDP from the info I have been able to gather.

      6-21-2006 I hurt my back doing dead lifts since then I have hurt my back 5 other times. It usually takes anywhere from a week to 3 weeks for it to stop hurting once I throw it out. It always hurts a little after I do squats or any kind of lower back work out for a few days

      7-12-2008 I broke my right ankle ever since then I have had problems rolling my ankle.

      10-10-2010 I tore the meniscus cartilage in my right knee, I had a MRI to confirm the tear on 3-31-2011. My right leg has never been quit the same after that. I can’t do leg extensions without my right leg shaking like there is a earth quake after a few reps. And I lost a lot of strength in that leg.

      3-31-2011 I started to notice my right quadriceps above my knee would twitch after a few months my right tricep would also twitch. I also had a bald spot in my beard that was never there before.

      5-12-2011 I went to my GP and she told me to try and rest since at that time the twitching was still just my right quadriceps and right tricep and only started in the afternoon. Still have bald spot in my beard GP thinks it may be a fungus or Auto immune. I started with meds to treat it for fungus.

      10-3-2011GP sent me to a nuero since I was still twitching. The twitching was still mainly in the same places on my right side but now my left tricep would also twitch some times. Still have bald spot in my beard

      10-22-2011 I was playing basketball and rolled my ankle falling on my back and throwing it out again. My back hurt all the time and made it hard to walk or stand up straight. I was always very stiff after I got up from a sitting.

      10-25-2011 Went to see the Nuero with my lower back still out and hurting. He ran electromyography (EMG) and nerve conduction study (NCS) on my right quadriceps, calf and tricep. He did not seem happy with the EMG and also said I had funny feet. He orders 19 blood test and told me I have demyelinating neuropathy. Now my left hand is also feeling stiff.

      11-11-2011 Went back to see Nuero about blood test they all came back normal. The twitching is now in both quadriceps, calf and triceps. My left hand still feels stiff some days. He put me on prednisone 20 mg a day. This is also the time I really started to worry. up till this point I was not really all that worried about anything it was just twitching.

      12-15-2011 I have been looking all over the internet about demyelinating neuropathy and found CIDP and GBS but my symptoms don’t seem to fit either of them. Then I found ALS and that freaked me out I stated to have pain and even more twitching for about 3 days. I found a lot of ALS info and after a lot of reading my symptoms don’t seem to fit ALS. I got better the pain went away but I still had the twitching.

      12-28-2011 Went back to see Nuero since the twitching was getting worse and now my left hand always feel stiff. He told me he does not think I have ALS or MS but CIDP. I let the doctor know my right leg was getting stronger and he took that as good news that the drugs were working. Also the bald spot in my beard has gotten a lot better.

      1-05-2011 My thumb and little finger started to twitch on my left hand and has been every day since. Also my left leg knee and hip hurt not all that bad but I notice it.

      I have been working out at the gym this whole time I had to drop a lot of the weight I was lifting after I hurt my knee and again after I hurt my back. Right now I do deep squats 3 set of 10 with 100 pounds. I am 6,1and 253 pounds 31 years old. I can also leg press 100 pounds with each leg. 3sets of 10 reps one min rest in between sets.

    • Anonymous
      February 5, 2012 at 1:07 pm

      The best thing to do is get a second opinion.

    • February 5, 2012 at 8:55 pm

      my cidp started as twitching and cramping. I was also into weight lifting and exercise so thought it was just overdoing it at the gym in the beginning. sensory loss came next and weakness was last. It progressed very slowly,making it difficult to determine if things were better or worse at times. An abnormal “voltage gated potassium antibody” was discovered in my labwork which may or may not expain the cramping and muscle twitching. hope you get some answers soon.

    • Anonymous
      February 8, 2012 at 6:10 pm

      I also have some muscle twitches and a lot of cramping in legs, feet, hands and arms., Not every hour, but several times a day. it is aggravating. It is not so surprising that your facial hair growth accelerated after prednisone. It is a steroid. That would also help explain the muscle healing and strength returning. That is a good thing. CIDP is a demyelinating neuropathy. It took Dr.s a year to diagnose me. They thought I had CMT first, and then changed it later. Bottom line, if the EMG showed demyelination, it leads them in one direction. CIDP, among others is down that path.
      I would not presume to overstep the Doc., but it is a fair question to ask him/her WHY they chose CIDP as the diagnosis. Your relationship with your Doc is most important. If you feel like you can ask them anything and get a fair answer, then you have a good one. If they blow you off, you don’t have a good one/ I am sure that you will get the right answers with the right neuro.

      Good Luck
      Dick S