October 22, 2019 at 9:36 pm #117222
I’m currently in rehab, 17 days since the first symptoms appeared, and 12 days since my final of five IVIG treatments. I’m doing well in rehab, working very hard and gaining measurable strength every day. The PTs and OTs (who have experience with GBS patients) are very pleased with my progress in my 10-11 days of work with them. I still have weakness in my legs — the right is worse, but they’re both getting stronger with work. Aside from that, my chief symptom and concern is numbness that has spread from my toes to my feet and now up my shins, and in my fingertips on both hands (all five on one hand, maybe three or four on the other). I put in a call to the neurologist who treated me in the hospital. The nurse who called me back told the doctor is considering bringing me back in for a second round of IGIV. Given all of the positive feedback I’ve gotten, I was quite surprised to hear this; I considered the numbness likely to be a temporary symptom that would fade, and that my PT results indicated I was well on the road to recovery.
Am I overreacting? Or does this sound like the doctor just wants to take a very proactive, aggressive approach to neutralize the antibodies that have been attacking my nervous system?
October 23, 2019 at 6:10 pm #117223Jim-LAModerator
GBS is almost always a single event and does not return after its normal 4-6 week run. The recurrent form (RGBS) is very rare (1-3% incidence rate) but is not known to last much more than 9-12 months. If your condition has seen flare-ups after a year or more from onset of GBS, most Doctors would diagnose the condition as CIDP, or possibly one of its variants (AMAN, MMN, etc.).
I was stricken by GBS/CIDP/MFS in 2008. It left me with permanent nerve damage and I’m still wheelchair-bound today. The long-term prognosis for CIDP patients can vary greatly and is summarized in the following study:
CIDP can usually be distinguished from GBS/RGBS through the following key tests:
• Diminished or absent deep tendon reflexes.
• A spinal tap, to analyze cerebrospinal fluid for elevated protein levels.
• A Nerve Conduction Velocity Study that measures how well individual nerves can send an electrical signal from the spinal cord to the muscles.
• Complete Blood and urine tests.
October 31, 2019 at 3:03 pm #117234
You did not mention any extreme pain and you can walk. You should consider your self lucky.
A lot of GBS sufferers are not that fortunate.
October 31, 2019 at 9:04 pm #117236
@jon, I definitely consider myself lucky, and not just within the world of GBS. The experience at the rehab hospital was a real eye opener. I am unable to walk, though, unless you count hobbling around with a walker as walking.
fwiw, the neurologist has dropped talk of additional treatment pending the results of the EMG.
November 8, 2019 at 11:02 am #117249
Nothing personal, and sorry I was not more uplifting. I was in the same boat as you as far as walking. I could always hobble around using a walker too. I learned more about this disease from my IVIG nurse. (it made me worse). She covers all of southern california. This disease is much more prevalent than I thought. She told me that since I was able to actually hobble around that I would be fine. She was right.
If Kratom is not illegal in your state, I would suggest it. I can supply a good link for purchase.
Worked wonders for me in combination with Lyrica, which is dirt cheap now having gone generic.
I also smoke alot of pot. I am officially a year in, and just trying to get to the point where I can drive again. I don’t trust myself yet, as my one bad leg can still numb up pretty good and I get just physically tired fast. Stress seems to be the biggest setback mechanism. So avoid it at all costs.
November 8, 2019 at 12:57 pm #117251
No problem, jon. What do you use the kratom and pot for? Pain? One thing I’ve found out in my short time with GBS is I can get pretty moody, depending on how my symptoms are acting up. Fortunately, I’m not experiencing any pain. Also, I had my EMG/NCS procedure yesterday, and the doctors are convinced that I “only” have demyelination — no axonal damage — and say my prognosis is good. So I’m feeling cautiously optimistic, and hope I can remain patient for my condition to gradually improve over the next few months.
November 11, 2019 at 1:26 pm #117260
I still deal with daily discomfort at this point not as much pain. Numbness still exists in my feet and hands and occasionally my diaphragm muscle. (thats the scary one), and this is a full year post diagnosis. I only take 100mg lyrica a day. Kratom’s like drinking a couple beers at its best. Pot is a good pain distraction. Trick is to find the right strain. (Some strains can make you more sensitive to the pain) Looking forward to the day that I can stop all three “meds”. Best of luck.
November 28, 2019 at 12:07 pm #117299Ron BrunelleParticipant
Happy Thanksgiving everyone!
Coming up on my 3rd year anniversary of being diagnosed with CIDP. 🎂
I just finished my 2nd infusion in my 3rd regiment of Gamunex. I receive two days of infusion a month.
The 1st infusion gave me a week or two of some improvement & relief.
The week before my second infusion my health declined, I couldn’t wait for the next.
Except for a few days of relief here and there, in general I’m experiencing a rapid decline in health and mobility. Over the last year or so, I’ve lost 40 pounds. I’ve gone from a relatively healthy, 61 year old 210lb working ironworker to a 170 lb. cripple. No matter how much I eat, my appetite is good, I’m hungry, I eat good meals. I can’t keep the weight on.
I have found a podiatrist who I receive therapy from, who has a method of restoring nerve damage.
If you live in Connecticut.
West Haven Foot & Ankle.
I absolutely recommend them.
I was skeptical at first, but I see positive results.
I hoping to see some improvement with my mobility, my neurologist has doubled my Gamunex dosage, Maybe I’ll see some improvement this month. 🤞
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