Another New Member Here…

    • BradMac
      May 1, 2008 at 9:33 am

      Let me start by saying that after reading many of the experiences in the forum, I feel a little unqualified to post. I was diagnosed mid-March this year with GBS, but my symptoms were not as severe as most of yours.

      I’m a 43 year old male. I’ve been dealing with recurring prostatitis and had a recent bout at the end of February. I also picked up the flu around that time.

      I remember clearly waking up in the middle of the night one night. I’d been feeling bad for a week, but now I felt like I had a strong electrical current running through my body. I couldn’t rest at all. My family physician had me on Cipro for the prostatitis, and Tamiflu and prednisone. He ordered an MRI and sent me to a Savannah, GA neurologist.

      By the time I could get in to see the neuro ( week or so), the symptoms had eased enough that I could sleep at night. He didn’t do the lumbar puncture, but said I obviously had a mild case of GBS. If this is mild, I really sympathize with all of you! I haven’t needed hospitalization, but I’ve been in varying degrees of pain for two months now.

      My legs are always tingling and hurting. Depending on my activity and amount of sleep, I also feel weakness in them. Probably the most disconcerting symptom is the sensitivity of my skin, especially on my back. It hurts to wear a shirt.

      It seems unusual, but there are time when the symptoms are almost gone and I feel [I]almost[/I] normal again. Then it returns.

      This week I’ve noticed a sensation in my lower throat, upper chest. It feels like I should be able to swallow it, or cough it clear, but I can’t. Is this a sensation anyone else has noticed, or maybe it’s something else going on at the same time.

      I do want to say that, although I’m sorry you all are here because you have GBS, it’s comforting to know I’m not as alone as I thought.

      Thanks, again!
      Brad

    • Anonymous
      May 1, 2008 at 10:02 am

      Brad,

      Welcome to the forum, and just so you know….having GBS/CIDP qualifies you for posting! We are all here because we need support and/or wish to offer support to others who have been sown this road. So keep posting, sharing and asking questions. There will be someone who can help with your questions.

      As to the swallowing/coughing, I did have something similar but it was much sooner than what you describe and within a day I was on a respirator so I can’t say whether that is the same or not. I also had sensitivity and pain all over my body. The nerves are exposed as the myelin deteriorates so I presume that plays a big part in your discomfort. I am sure there are others here who will know more about this than I so look for their replies!

      Again, welcome and I look forward to hearing more from you!

    • Anonymous
      May 1, 2008 at 10:14 am

      Welcome to the forum. I understand about the skin sensitivity. I call it the Princess And The Pea Syndrome. I could not tolorate a wrinkle in the sheet or my clothing or a tangle in my hair while in bed. It HURT! These fried nerves we have just send a mess of short circut messages to the brain and we have to just tolorate it and hope is eases. I had to have a trech tube to breath because my tounge seemed to be swollen and my throat closed off or some thing like that. I am not too sure because I was unconsious during that time. Anyway – please feel welcome and join in to the conversation. You DO have another view point to contribute that may be helpful to someone.

      Alma

      GBS-MFv 1993 and 2004

    • fairly_odd_mother
      May 1, 2008 at 11:32 am

      welcome to the forum!

      I too had (and still have sometimes) the weird throat feeling! When I was first sick, I felt the need to clear my throat or cough something up almost all the time. I also had a feeling in my neck as if I was wearing a tutleneck that was a bit too tight. I could breath and more or less swallow fine (would test it by taking a drink of something…I know kinda odd, but I had to constantly reassure myself), but the tight feeling was always there and so was that “lump in my throat” that felt like mucus. It lasted quite a while it seemed and then got better after about 6-8 months I think. It would come and go and even now almost 2 years later I still get it once in a great while but not nearly as bad…not the neck thing but the throat thing. I found relief by eating “Otter Pops” as often as needed or a very cold washcloth on my throat and drinking lots of fluids.

      I really wish you well and hope you start feeling much better very soon. Remember, you are very very new to this and may just now be starting to enter the plateau stage or even recovery stage. Which both can last quite a while, or you may get thru it soon. It is hard to say and no one can predict the rate at which you will get thru this…but you will! Rest rest rest, allow yourself that, insist on it and take very good care of yourself.

      Lori

    • BradMac
      May 1, 2008 at 12:15 pm

      Thanks to everyone for the kind welcome!

      It’s plain that the symptoms are worse if I over-exert, but rest is a difficult thing to nail down. I have my regular job behind a desk, so it’s not bad, but my brother and I run a small sign rental business in the afternoons and weekends. It can be physically demanding sometimes, but it usually takes two to do the work.

      I have two kids in school, I’m an assistant little league coach on my son’s team, etc. I don’t want to risk aggravating this condition, but these things have to be attended to, if I’m still able. My mom and my wife constantly push me to slow down, and I really do when I get a chance.

      Lori, I appreciate your experience with the throat sensation. I was hoping it wan’t something else coming on.

      My wife jokes that I’m getting old before my time. I was in great health 2 years ago. Then I had to donate a kidney to my brother. He has lupus and it caused renal failure. I got through that with a little residual pain, but I got over it.

      Since then, I’ve developed regular prostatitis, fallen arches, Giillian-Barre’ syndrome, AND had to buy reading glasses! 😀

      Thanks again to everyone. I’ll be a regular here, now that I’ve found you.

    • Anonymous
      May 1, 2008 at 1:57 pm

      Hi Brad, Welcome to The Family. Feel free to ask any questions you have or just vent when you need to. It sounds like you have alot on your plate, try to rest when you can. Take care.

    • Anonymous
      May 1, 2008 at 2:53 pm

      Welcome to the family Brad, it’s nice to meet you. Feel free to PM me anytime if I can be of help.

      Jerimy