Have symptom questions

    • Anonymous
      July 11, 2013 at 6:13 am

      Hello all,

      I looking for some answers for the symptoms I have. A brief history, I have had GBS 3 times, 1997, 2004 and the last time was Jan 2013. This time they diagnosed me with CIDP. This time they first treated me with high doses of Prednisone, all that did was made me fat. I has then put on IVIG which worked well in the past. The past 6 months I have received 60 grams x2 every 4 weeks.

      The problems are the last couple of months I have stalled out with my recovery. I have tingling and pain in my feet all the time, feels like I am standing on burning hot asphalt. Doesn’t matter if I wear shoes or not. The longer stand the worse it gets. If I take all the pressure off my feet the pain will almost go away until I stand again.

      My blood pressure and heart rate is strange, its up and down all through out the day. When I get up in the morning, before I do any thing, I will take my vitals and on average it will be 150 over 100 with a 90+ heart rate. Before this incident my vitals averaged 128 over 80 with heart rate of low 60s. Since Jan. I take medication but it’s a crap shoot on trying to control it.

      But the breathing issues I’m having is the frustrating part. I will get tightness in my diaphragm and can’t get my breath. Feels like I have a girdle on and I can not expand my chest to get a breath. I don’t have to be doing anything stressful just out of the blue it will hit me. I have seen a Pulmonary Doc and they believe I have asthma and are treating for it with Symbicort and Albuterol. Sometimes it helps but most of the time I have to wait until it passes. I’m over 50, never smoked, nor had asthma, or allergies. About a month after contracted CIDP I had a breathing issue which lasted about 2 hours and would not calm down. I went to the local ER, I live in a small community, they had no clue. Great people but I knew more about GBS and CIDP then they did. They did get a hold of my Neurologist Doc and gave me a shot of some type of steroid which relieved the problem.

      I know GBS/CIDP effects everyone different. I was just hoping some one has experienced some of the same symptoms I have and can give some advice or suggestions on how treatment was given. Thanks

    • GH
      July 11, 2013 at 1:17 pm

      My feet are similar. The longer I am on them, the more they hurt. At times, it is like walking on hot coals. When I rest my feet, I have just a mild tingling.

      Your other symptoms are not familiar to me.

    • Anonymous
      July 11, 2013 at 3:31 pm

      Thanks GH,
      Can you tell me how long you’ve had this codition with your feet? Is there any medication that helps? I’m currently taking 3000 mg of Gabapentin and will increase to 3600 mg in about 2 wks. It doesn’t seem to be working.

    • GH
      July 11, 2013 at 5:26 pm

      I am about two and one-half years into recovery. I have had these foot sensations 24/7 throughout. It seems to have moderated somewhat, but may be with me forever. It doesn’t matter to me, because it is quite tolerable when I am off my feet, and not that bad when I am walking. When my feet light up, as they sometimes do, I just have to get off them for a while.

      I don’t take any pain meds. I did for a short time while hospitalized (for leg pain).

    • Anonymous
      July 12, 2013 at 10:33 am

      Are you able to work?

    • Anonymous
      July 15, 2013 at 8:31 pm

      I have the blood pressure problems you were talking about. I normally have low BP, and then when I stand up or stand for long periods, it drops and I get dizzy. It’s called postural orthostatic tachycardia syndrome. I had GBS 19 years ago and was just diagnosed with this BP thing a month ago. They said it’s GBS related. I wonder if you may have something similar.

    • Anonymous
      July 16, 2013 at 3:15 pm

      Thanks Yvonne, I will ask my doc. My BP doesn’t drop, it is high. I don’t get the light headed feeling when I stand unless I’m having breathing issues. I’m currently on my 3rd type of BP medication.

    • GH
      July 17, 2013 at 12:54 am

      Tierhog, I could work now, but I don’t. I was close to full retirement age when I got out of the hospital.

    • Anonymous
      July 17, 2013 at 6:02 am

      GH, That’s kind of where I’m at, I can retire from my job but I’m not old enough to draw SS, and I don’t know if SS will pay out on a medical disability.

    • Anonymous
      August 27, 2013 at 5:48 am

      Hello all, I was diagnosed with GBS with a variant MFS. Even with the meds I have been prescribed, I still am having a lot of pain in my entire right side. My eye sight is better, but my eyes and behind them both constantly hurts. I have noticed recently that I loose the ability to hold onto anything with my right hand. I have also been having bad headaces in the back of my head at the base of the skull.
      I haven’t been able to work because of the pain, and really not being able to walk long distances.
      I am just wondering if I am worrying too much or is this just part of the recovery process???

    • GH
      August 27, 2013 at 4:04 pm

      Jerry, you should have started a new thread for this question. The moderators do not seem to have the capability of moving posts to new threads.

    • August 28, 2013 at 7:18 pm

      Tierhog, I had to go on disability before retirement age. You may find some of the disability discussion on this other thread useful: http://www.gbs-cidp.org/topic/short-remission-time

    • Anonymous
      September 9, 2013 at 3:00 am

      My husband was diagnosed with CIDP in July and had BP and resting pulse that were freaking us out. Blood pressure was all over the place, as high as 192/122 and as low as 90/56. It is the low BP that really gets the doctor’s attention. Resting pulse was around 120 bmp. If I had a resting pulse of 120 24/7 I would feel completely exhausted. He had his 3rd IVIg last week and we have noticed that both BP and pulse are improving. Pulse has dropped to a range of 93-104 and BP is doing slightly better. I hope this continues to improve and hope yours will too.

    • Anonymous
      September 9, 2013 at 1:44 pm

      Thank you trishaep, my BP has stabled for the most part, it stays in the 140/90 range with medication. I’m still doing the IVIG every 4 weeks. Tell your husband to hang in there, it will get better.