Advice wanted

    • January 13, 2017 at 2:11 pm

      Hello all. I’m a 48 year old very fit healthy male (cyclist and fitness enthusiast in general). In mid November 2016 I was prescribed an antibiotic (Bactrim) for hemataspermia (which went away on its own) and came down with some strange symptoms including chest pains and peripheral polyneuropathy. My blood pressure was fine and I was working out pretty intensely and so my doctor at that time said the chest pains were probably due to stress. The PN was limited to tingling in feet and hands and waking up to numbness in my hands in the middle of the night. Again he wasn’t too concerned – the final straw as to why he’s no longer my doctor! Something just didn’t seem right. At the same time I came down with a flu/cold. I thought all this was a reaction to the Bactrim so I immediately stopped it 5 days later, and figured the PN and other reactions would go away on their own. Fast forward two months (mid January), Im still experiencing PN and now the symptoms are worsening. I feel numbness and weakness in my forearms and thighs, more pain and weakness in my joints and fatigue and general tiredness. However, I still feel quite strong – I can walk fine and squat and do pushups. But I feel like I’m pushing my luck, as these last few days the symptoms have gotten worse. I’m not taking it very easy trying not to tax my body too much. I now noticed numbness on my forehead above the eyes and well as a bit more shakiness and tenderness in the forearms and thighs.
      I have an appointment with my new PCP next Friday (a week from today) whereupon I will ask to be refereed to a neurologist….
      Am I being too slow with all this? I don’t even know what I have. But if I have GBS and still can walk, etc, is my condition considered mild enough to wait it out? Im trying to push them to see me quicker and get the ball rolling but I’m not having much luck. I went to the ER 3 days ago and described my symptoms whereupon they did blood work and a CT scan to rule out the usual suspects but I failed to mention my concern about GBS. Was that a mistake? Should I go back to the ER and be more persistent?

    • January 13, 2017 at 4:59 pm

      DO NOT WAIT! GBS/CIDP is a very difficult disease once it has damaged your myelin and possibly your axons. I’m in a wheelchair because they didn’t get proper treatment for me soon enough when I became afflicted.

      Read the following then go back to the ER and get help:

    • jk
      January 13, 2017 at 7:53 pm

      What JIM-LA said. In addition, unless your insurance requires a referral, try to find your own neurologist. The Centers of Excellence listed on this website are a good place to start.

      Contact the Foundation to find local support.

      I do see some of your symptoms listed as side effects, major or rare, of Bactrim.

      Keep a journal of your symptoms, how they change and questions you have. Carry it with you. This way you won’t overlook something next time you see a doctor.

      Good luck and Happy New Year.

    • January 13, 2017 at 7:56 pm

      Read my post ” lucky escape” my age is different but I was fit and got away with it because I acted immediately and had IVG in 7 days of symptoms. When you get there push them hard to determine diagnosis and don’t let up until you are discharged.
      It sounds pushy and it is but it’s your nervous system and as Jim says once it gets going on you it is vicious and can damage your life.


    • January 13, 2017 at 8:54 pm

      Thanks for your responses. I dropped the ball and wasn’t a good advocate for myself. I just got back from the ER and the doctor didn’t think I had GBS and couldn’t find anything and I didn’t challenge him on it. I guess my symptoms weren’t severe enough to warrant further treatment. Its hard to argue and demand something from an ER doctor who isn’t specialized to diagnose it. Plus it been almost 2 months since the symptoms started and the PN could have many causes which they aren’t set up to determine. I haven’t even been diagnosed with anything yet. I’ll wait till next friday and push hard with my PCP. Im so frustrated with the lack of understanding and urgency. I feel so stuck. For the record my symptoms come and go throughout the day. Sometimes I feel nothing and other times its very uncomfortable but never excruciatingly agonizing. At the ER I didn’t actually feel so bad so it was hard to communicate the emergency.

    • January 14, 2017 at 3:59 am

      Seems between the rock and the hard place and I sympathise.Mine was cut and dried full on symptoms albeit GB/MF mixed. I had two neuro specialists very familiar with the illness as it is a teaching hospital. I had one junior doc visit me by agreement taking detailed notes on my symptoms for his own use and thesis so it seems a different world to yours sadly. I am not qualified other than by my own experiences to advise you but I really suggest you keep behind it for your own safety.


    • GH
      January 14, 2017 at 3:48 pm

      You should see a neurologist as soon as you can if you suspect peripheral neuropathy, but an emergency department is not necessarily the place to go. Some cases of GBS are extremely rapid onset and call for emergency treatment. An ER will keep people so afflicted alive, but will not necessarily do the full neurological diagnosis. Most people with GBS have time to see a neurologist, who will decide whether hospitalization is required.

      In my case, I waited a week or more before seeing my personal physician, and it was another week before he referred me to a neurologist. It was nearly a week before I could see the neurologist. When I saw him, he put me in the hospital immediately.

      It is an emergency if you are getting noticeable worse daily, but usually in the nature of needing treatment within days rather than hours or minutes. For GBS and CIDP, generally earlier treatment leads to better results.

    • February 13, 2017 at 7:11 pm

      My initial event was in October 2016, and it was misdiagnosed as B12 deficiency. I was 63 years old. My left leg is still quite unpredictable. Generally it is the most difficult after laying down for the night. The ankle seems very unstable in the morning as well. I seem to still have an event of weakness and numbness in my limbs about every six days, but my foot stays numb all the time. The episodes are not as serious as the one four months ago. I was not treated for GBS. There are some days which are good, but still many that are not. Could someone tell me what to expect? Will the events become fewer and far between? Or will the numbness and weakness become less severe? When will I know that I am getting to the other side?
      Any information is appreciated. Thanks.

    • February 13, 2017 at 9:07 pm

      Brokenbow, Did you have the normal GBS/CIDP tests? What is your diagnosis?

      If it was GBS, that peaks in 4-6 weeks and you would be in recovery phase. Recovery times vary greatly and most posters here report still having residual symptoms after several years. If symptoms have not lessened since Nov 2016, it’s likely something other than GBS.

    • GH
      February 15, 2017 at 2:02 am

      Brokembow, do you mean that you recurring episodes in which your legs get weak then gain strength? GBS is not like that. With GBS there is progressive weakening to some maximum degree, then recovery (which may or may not be complete). It is not like a roller coaster.

      Do you have a diagnosis? Do you have a neurologist? The first thing is to have a neurologist nail down the diagnosis.

    • May 2, 2017 at 12:39 pm

      Hi I am Rose and I have Rheumatoid Arthritis, Osteo Arthritis and Opelna Arthritis for the past 14years. I was diagnosed with Gillian Barrs Syndrome about 2 years ago. I have monthly infusions for my RA. I have loads of pills which I take. I am also taking strong medication for PAIN. I have a good Rheumatoid Specialist who is very good. I have a lot of pain and my one leg from the knee down is dead and now it has started on my other foot. In fairness I must tell you that I have had two major back operations and a screw in my right hip. My right leg has become shorter and smaller than the left leg and my foot is smaller than the other which makes it difficult for shoes. I cannot wear a heel as my ankles are not strong. I can’t hold a big mug of coffee as it will fall straight through my fingers. I can’t make a fist in both hands due to my arthritis. When I complain about pain and things get worse or flare up my specialist says that he will talk to my Nureo as they work together and know each other very well. I like my Neuro Specialist who takes no nonsense which I like. I have full blood tests every month. But I think I will have to go back for more fluid drawn from my spine again to see how my GBS is doing? For my GBS I have had Polygam and dialysis Is there any other way to test again. I am so very very tired of hospitals. I have a port in my chest where the infusions are connected because my veins started to collapse. Its my second one. It has to be renewed every 2 to 3 years. Is there any one out there that can give me some advise, any advise. I am at my wits end. I get irritated very quickly and my temper is not that great either. I feel ashamed and I use a frame at home when I need it on a bad day but my balance is not good at all. When I go to the shops once a week I use a walker to get me around. When I get home I am so tired I fall asleep and I have hardly done nothing. My family are not really there for me for support. My husband has a short fuse and does not understand anything. He says I complain too much. TV is my life. Looks like I am not having a good day either as I am complaining again but better to you. Please can some one give me advise or any good ideas. Please remember my hands are buckle and bent. I can’t hold things as my fingers are not strong and I am only 62 years old. I feel helpless!!! I am on the group for RA as well. So I do chat there but I need to know about my GBS. What is going to happen to me. Its all quite scarey for me because I don’t know which parts belong to what or where. Very confused. Pleasse help!

    • May 2, 2017 at 3:29 pm

      GBS is unlikely after so long. GBS almost always peaks in 4-6 weeks then resolves, often leaving behind residuals. If you are having relapses since the original attack 2 years ago, you may have CIDP or another chronic variant of GBS. Testing for CIDP is discussed throughout these forums, a recent discussion is contained in the following thread:

      I would think that determining what you have is the first order of business. Then treatments can be reviewed to make sure they don’t interact with some of the other ailments you have and the ones that don’t can be tried. I’m thinking Rituximab may be a helpful treatment. It can deal with many forms of CIDP and help arthritic conditions too. You can learn more about it here in these forums. Simply type the word in the forum search box and click search.