Lots of Questions

    • Anonymous
      March 12, 2012 at 4:15 am

      I am desperate for some advice and guidance. Here are my specifics:

      57 years old
      Diagnosed GBS 15 months ago
      Severe case – put on respirator
      Paralyzed from neck down
      4 months in hospital and in-patient rehab
      Recovery went well thru month 8 – could walk unassisted by month 6
      Was verydisciplined about physical therapy through month 8
      Came down with c-diff colon infection in month 9
      Tremor throughout body started at roughly same time – doctors don’t know why
      In bed with recurring colon infection for almost 4 months
      Now have what lookslike muscle wasting in thighs & knees & hands & feet
      Severe nerve pain from knees to toes and from elbows to finger tips – SEVERE
      Gabapentin & Lyricahave not help – Not sure if dose is/was adequate – again, doctors not very helpful
      Am now also trying acupuncture and naturopathic care – too soon to see any benefits

      For folks with sensory nerve damage and severe nerve pain, what meds have helped and at what dose?
      Is the muscle wasting likely now permanant, or can that be reversed with exercise?
      Is there anyone on this forum who had tremor that went away, or is tremor likely permanant?
      Still spending a lot of time in bed due to pain – severe pain. Force myself to be up for 4 hours daily. But that’s about all I can do. Is this normal for recovery at 15 months?
      What is a reasonable amount of time to be up and moving each day? to be exercising each week?
      What supplements have helped others?
      Has acupuncture helped anyone on this forum?
      Am also experiencing hair loss. Is this something that people with GBS typically experience?

      Apologize if the questions seem stupid. Completely isolated from others with GBS. Was released from OT&PT in month 8. Doctors & therapists seem to have so little experience with GBS. They have provided little advice and guidance. Don’t know what I should be doing or what to expect. I fear thatmy hope for a good recover has beenlost due to the infection. The pain is shutting my life down. The video on this website provides so much optimism. ????????

      You all likely know more than the docs and therapists do? What are your thoughts and advice?

    • Anonymous
      March 12, 2012 at 2:10 pm

      I was 57 when I got GBS in 2007.
      Will answer what questions I can.
      I started on lyrica 100mg 3 x daily, weaned down to 1 x daily. That is small dosage compared to others. Nothing made the nerve pain go away.
      Don’t know if muscle wasting can be reversed, I have it also and would like to know the answer to it.

    • March 12, 2012 at 2:16 pm

      Hi CJ

      Sorry to hear you are struggling. My case was not as severe as yours, so please take my advice with this in mind.

      ‘For folks with sensory nerve damage and severe nerve pain, what meds have helped and at what dose?’
      -I took Lyrica for a long time. I don’t think it helped much and just kept me stoned for a year and a half. Who knows? Maybe this in itself helped me, but I would never recommend addiction to anyone. When I switched neuros, my new one said I shouldn’t be taking them. For me, getting off a max dose was long and brutal at times.

      ‘Is the muscle wasting likely now permanant, or can that be reversed with exercise?’
      I know the wasting is caused by the nerve damage, but I firmly believe that inactivity is a factor too. You sound like you are keeping busy, that’s fantastic. No doubt, getting c-diff was no help (hospital gift I reckon?)

      ‘Is there anyone on this forum who had tremor that went away, or is tremor likely permanant?’
      I used to get tremors, especially at night when just getting into bed. I found they increased the more fatigued I became.

      ‘Still spending a lot of time in bed due to pain – severe pain. Force myself to be up for 4 hours daily. But that’s about all I can do. Is this normal for recovery at 15 months?’
      Everybody’s different. The rest/activity balance is difficult for everybody. Just make sure you get plenty of both.

      ‘What is a reasonable amount of time to be up and moving each day? to be exercising each week?’
      Rest when you need it, be active when you can. Not a lot of help, am I?

      ‘What supplements have helped others?’
      Shark liver oil or some kind of fish oil, B-12, B-6, D, Ginseng, Maca, Glucosamine Sulphate, Probiotics (for a healthy gut), everything else from healthy eating. I tend to eat a lot of protein for muscles.

      ‘Has acupuncture helped anyone on this forum?’
      It didn’t do a thing for me and I felt ridiculous. Maybe you have to believe in it more? I dunno. I have found massage therapy to be extremely beneficial.

      ‘Am also experiencing hair loss. Is this something that people with GBS typically experience?’
      I didn’t but I haven’t heard this from others.

      Nothing you could say here sounds stupid to anyone. It can be good to talk to someone who has made the best of life with residuals. I have met people who feel they have made a full recovery. However, they were younger than me when they were struck. I have also met folks making the best of life despite having residuals. I like to think of myself that way.

    • Anonymous
      March 12, 2012 at 2:32 pm

      My post went on before I finished with it but I see northernguitarguy has given you good answers to your questions so I don’t need to add any more.
      Ask your questions, they are not stupid.
      Sorry you have had it so rough.
      Good luck to you and hope things get better.

    • March 12, 2012 at 3:47 pm

      we have cidp, gbs was initial dx. The tremor lasted for about 2 years, almost 5 years since dx, tremor is now gon.
      Never took drugs other than ivig, but regarding your question on gabep, aka neurotnin, some on the site take as much as 3600mg a day for relief.
      about the hair loss, could be stress, your bodies reaction to all that has happened, reaction to antibiotics I assume you took w/c-dif., could be vitamin def. or some other autoimmune. Do you have diabetes?
      About supplements, everyone’s reaction or thought process is different, we did go that route, for about 1 year, it did help with several things. also had extensive testing done to find out alergy sensitivities (eliza blood work test) as opposed to standard rast blood work test. We eliminated all of the food we were “sensitive” to and saw remarkaBLE CHANGES. I feel we have “patched up” our leaky gut. The supplements were abundant and expensive, $300 a mont in the begining and after 6 months, about $300 every six months. I feel they did help, but not suggesting anything to you. Everyone reacts differently to supplements as well, the supplements are sometimes contraindicated w/ standart medicine. It has to be thougt out carefully by a trusted professional.

      Vitamin D is very important, have your levels checked. There is also some work being done on Vit a and its relevance to ms/lupus type diseases (myelin sheath autoimmunes)

      Building muscle mass takes a while. It was about 2 years that we started seeing improvement and honestly only in year four was the difference very noticeble with all of the working out. There is marked definition this year, profound actually, but it took a while.
      GBS….getting better slowly as penned by a past member named Gene.

    • Anonymous
      March 18, 2012 at 12:29 am

      The supplement Potassium Gluconate helps my muscle strength. Without it, I have weakness that becomes tremors at its worst. You can buy Potassium Gluconate over-the-counter (regular form or timed-release). Get a doctor’s advice first to ensure it doesn’t conflict with your other meds. A food high in potassium is canned salmon. I went through a few years where I ate one 200-gram can of salmon a day, and I am not kidding. That was just before 2000, at which time nutrition labels became more detailed. I studied the new label to find what salmon had that helped me, and found it listed a high potassium content. I changed to K supplements. What a relief: I like salmon, but felt saturated with it.

    • Anonymous
      March 23, 2012 at 12:59 am

      Hi CJ,

      I’m 54 now and was diagnosed when I was 39. Everyone is different on the severity and recovery. I had a ‘mild’ case – not hospitalized although looking back I wish I had been as maybe I would have recovered better. I finally got SSDI last year which was a true blessing as I could not hold down a secretary job and with the job market no one would hire me. Everything in my life has changed since GBS…I’ve learned the hard way about ‘slowing down and smelling the roses’! It’s sad for me to see how important potassium is because I have now been diagnosed with an inherited kidney disease and doc says only one meal a day with protein. Phosphates and potassium are also hard on my kidneys. We all seem to have our paths but end up here sharing and giving/recieving support. You are not alone…you have your GBS family now!!!

      Oh, I did have acupuntcure years ago and it seemed to help a little bit. So if it feels good, I say go for it. Just keep up on your rest and you will notice more quality time when you are awake.

    • Anonymous
      March 23, 2012 at 3:53 am

      Further to potassium: Before taking this supplement, ask your doctor to check your blood level of potassium. On a lab report, the value is recorded beside the letter K (which is the chemical symbol for potassium).

      My lab tests verify I need the supplement: The normal range for K is 3.5 to 5.1 mmol/L. My level varies between 3.6 to 4.2 mmol/L when I am taking Potassium Gluconate tablets daily. That is called “low-normal” (meaning inside the normal range, but at the very low end). When I don’t take the supplement, my blood level quickly goes down to 3.2 or so (below the cut-off for normal). Note: Use the normal range printed on your own lab report; this reflects the specific equipment used in your lab.

      Potassium supplements are useful and necessary for me. But I would like to know WHY. What process causes me to lose the potassium I have in my body, and why do I need so much replacement? Researchers are looking into this topic. The GBS/CIDP Foundation Newsletter (Fall/Winter 2011, page 5) published “Treatment of the Residual Effects of GBS with Dalfampridine” which says:

      “In incompletely remyelinated axons the potassium channels are exposed and potassium leaks out of the axon, leading to loss of the ability of the axon to conduct the electrical impulses. Dalfampridine (4-AP) partially prevents leakage of potassium and improves nerve conduction. Recently Dalfampridine has been shown to improve walking in MS patients, presumably by blocking potassium channels and improving nerve conduction. Since MS is characterized by demyelination and incomplete remyelination in the CNS, it is plausible that Dalfampridine may also help Guillain-Barre patients with residual weakness, sensory loss or fatigue due to incomplete remyelination and also patients with CIDP.”

      “There are important differences between CNS and peripheral nervous system (PNS) myelinated axons… It is possible there is not significant potassium leakage in the PNS because those axons remyelinate more effectively than CNS axons… Despite the caveats, Dalfampridine could produce meaningful improvement in GBS patients who have incompletely recovered, particularly those in whom fatigue is the most disabling symptom. A clinical trial will be necessary to determine whether there is any benefit; at present the med can only be prescribed for MS patients.”

    • Anonymous
      March 29, 2012 at 3:06 pm

      Not sure where in Canada you are located bt there is a GBS/CIDP get together April 14th in Vancouver BC.
      When: Saturday April 14th, 2012
      Time: 11:00AM to 3:00PM
      Bonsor Recreation Complex
      6550 Bonsor Ave.
      Burnaby, B.C.
      V5H 3G4
      604 – 297 – 4597
      Arts Room – 2nd floor