Advice please for a newcomer !

    • Anonymous
      May 29, 2007 at 8:30 am

      Hello Folks

      I have recently been told that GB/CIDP is a likely diagnosis for my symptoms, and just reading the replies given to those like me has been tremendously helpful. I do have a few questions though, and would be very grateful if those of you who have time would reply.

      Unfortunately it has taken 5 years to get this far, my GP has been less than sympathetic. After investiagtions proved negative for MS, he repeatedly told me that I should accept having a cyclical neurologic problem that was part of getting older (I am 39). I waited until he was on holiday and saw his locum who agreed to refer me back to the neurologist straight away. Have others out there been fobbed off by their GPs ?

      The previous 2 flares, post sinus infections were mild compared to the current bout. It began a couple of months ago after an abdominal infection and the leg weakness and back pain that had been a feature of the last two episodes returned with vigor. This time I have very weak arms and my grip seems to be gradually less each day. Does the weakness usually reach a level and stabilise or does it only get better with treatment ?

      I would be very interested to hear if anyone has experienced eye / facial pain ? It feels like someone pokes me in the eye now and then!

      Last Saturday I went out for the day and drove for the best part of 7 hours. I used to be an HGV driver so I never gav the trip a second thought ( I’d be sitting down after all ). On Sunday I could hardly pick up a cup and my legs turned to jelly, walking up the stairs was like climbing up a mountain; does fatigue set in that easily ?

      I’m not due to have EMG tests until after my holiday, in 3 weeks time. My neurologist says he’ll start treatment immediately afterward but I’m a bit worried about driving for long periods until then. Can anybody suggest ways to help me through ?

      Many thanks for reading, Rachel

    • Anonymous
      May 29, 2007 at 10:32 am

      hi rachel & welcome,

      as you prolly know, you should have been seeing a gbs neuro all these years & NOT your unhelpful gp. all that is in the past though, if your neuro does start treatment asap. be sure the ncv part of the emg is done. we are all different & you can not judge yourself by how others do, but pain & weakness is part of gbs. when the bad gbs antibodies are out of your system & you start to recover, the pain & weakness will subside. be more proactive in all of this. if you don’t look after yourself, don’t count on a doc [or anyone] to do it. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 29, 2007 at 12:16 pm

      Hello Rachel,
      Welcome to your new family where we feel what you feel. You’re headed in the right direction now. When you start seeing the neurologist, it would be a good idea to have all the tests done, EMG, NCV, MRI, specialized bloodwork and a spinal tap or lumbar puncture. It might be a good idea to also ask the neurologist about Miller-Fisher Varient, which can effect the face, but I know with my CIDP my eyes can bother me. Many of us live in areas where there are not too many well informed neurologists, so what you want is one that is willing to learn along with you. We all struggle with fatigue, a very big part of GBS/CIDP, so LISTEN to what your body tells you and TAKE NAPS when you need to. We’re here when you’re ready to tell us more.


    • Anonymous
      May 29, 2007 at 3:56 pm

      Hi Rachel. Welcome.
      It seems the symptom pattern is different for everyone with CIDP. I had relapsing and remitting weakness for over a year before I finally got diagnosed and treated. Sometimes the weakness wasn’t too bad; other times it was devastating. The remissions were to different degrees, too — sometimes total, sometimes just a little better. Hang in there. It’s good you now have a neurologist who is taking this seriously (as they should!) and will recommend treatment. As to the pains, I have what I call “random shooting pains” — intense pain but brief. They are mostly in my feet but also can be in my hands, neck, etc. So far I have not gotten any medication for the pain, but others here have more frequent or constant pain and take a variety of meds. I have been getting IVIG treatment since last July and it has been great — I could hardly walk or hold anything at the time I went in hospital and felt almost immediate improvement. Others have had different experiences — again, we’re all different. I hope things improve for you quickly! 🙂


    • Anonymous
      May 31, 2007 at 4:49 am

      Thanks very much to each of you that replied to my post, it means alot to know that I have someone to talk to that’s been where I am !

      I’ve always been an active person, slowing down and learning not to push myself is going to take some effort. Yesterday was pretty bad, after dropping the cats biscuits, dogs food, my breakfast and then the umbrella, I decided enough was enough and gave my Neurologist a call. Wonderful news, he’s brought my appointment forward to tommorrow. I have no idea what he’s planning to do treatment wise but I’m crossing my fingers that he starts something soon.

      I will let you know how I get on, thanks again for your help

    • May 31, 2007 at 10:11 am

      Good luck at your appointment today Rachel! Keep us posted. Dawn Kevies mom

    • Anonymous
      June 4, 2007 at 4:47 am

      Hello everybody

      Well I had the EMG and NCV tests on friday and I’m more confused than ever. The NCV was normal but the EMG tests done on arms/legs were abnormal. My neurologist said that he was stumped and said it was likely to be a problem with my CNS. My MRI was normal and they did not find anything wrong with the LP other than very high pressure. I have a large bulging disc at L5-S1 that I thought may affect the leg EMG but surely not the arms?

      He is now hesitant to diagnose GB/CIDP but acknowledges that the pattern of weakness, fatigue and the vertigo are common to a demyelinatory disease.

      If anyone out there has any ideas or questions that I could ask him, I would be very grateful.


    • Anonymous
      June 4, 2007 at 7:23 am


      for me, at least, this is somewhat unusual. a normal ncv, but abnormal emg indicates your nerves are ok & the problem lies with the muscles. i don’t see how this can be associated with your cns just as i agree it is not consistent with gbs. if he can’t Dx you, ask what he plans to do next. either it has to be more tests or try some Rx to see if it helps. lacking that, i suggest going to the mayo, they are great Dxers. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 6, 2007 at 2:07 pm

      There are some muscle diseases that have symptoms similar to nerve diseases. Have they considered and tested for polymyositis or inclusion body myositis? Is your serum creatinine elevated? Have they done muscle/nerve biopsies?

      Also, I noticed you mentioned vertigo. I’ve had benign positional vertigo for years — it is unrelated to my CIDP, which started about 2 years ago. Just because you have vertigo doesn’t mean it’s related to the weakness and fatigue. Did you have a brain MRI for the vertigo or other CNS abnormalities? (Actually, the only thing that helps my vertigo is cervical spinal chiropractic adjustment.)

      Hang in there! For me, getting a diagnosis was the most frustrating part of the process, but until you’re there, there’s not much the MD’s can do.


    • Anonymous
      June 6, 2007 at 10:55 pm

      Rachel I don’t have anything to add to what everyone has posted. It will be interesting to follow up with a WHAT NEXT, DOC? I don’t have any of the problems you have mentions so I just wanted to let you know I have read your posts and I am glad you have become a part of our message board family. I am glad that you got your appointment moved up. Listen to your body and get well!

    • Anonymous
      June 7, 2007 at 12:51 am


      Welcome and good luck in your quest to get a firm diagnosis. Many of us had that same issue. Get a second opinion if you think you need to. Take care and hope to get to know you better.