Worse symptoms after IVIG

I am so grateful to have found this site!
Was diagnosed with mild GBS beginning of Sept. I had experienced very painful feet, burning in my legs and arms, occasional shooting pains throughout body, and lost reflexivity in knees and feet. Had no paralysis thank heavens. Had IVIG treatment and was sent home.
Here I am at the new year and the feet pain and burning is worse, reflexivity is better in knees and feet, but hands extremely painful, and they will go numb. The neurologist said if someone had carpal tunnel syndrome before contracting GBS, it will be enhanced. I did not have carpal tunnel prior to GBS.
Now my left leg is going numb if I spend any time on it. My stamina is bad; was very strong and healthy before GBS, but now a trip to the store wears me out. I needed a walking stick, so I made one and have made others to keep busy. (Have been making the sticks since I can’t work now. I’m on short term disability, and I’m not working)
The neurologist claims repeat, or further treatments of IVIG have no value, however I read in the discussions of others who have needed them for recovery.
My neurologist also said recently that because I have not recovered much at this point, that I should expect a longer recovery, and to consider that many have to learn to live with the pain.
Any recommendations? Should I keep my neurologist, or get a referral to the Mayo Clinic, as I live in Minneapolis? I do think my neurologist is pretty sharp if that matters at all.

I gladly welcome comments or advice.


Bergerhoo! My friend was diagnosed with GBS on My 21st this year. IVIG is what they first treated him with and within days of his release from the hospital, he relapsed. This time they treated him with plasma pheresis. Has your neurologist discussed this with you? It really helped my friend for a longer period but he did relapse again and his exhaustion was unbelievable! He had another round of plasma pheresis and was released to a rehab where he did get better. But, his diagnosis was changed to CIDP, the chronic form, and he was treated with weekly plasma pheresis for a few weeks! He is now on a long term treatment for CIDP and is doing well! Discuss the pheresis with your neurologist and see what he says. They say that neither of the treatments is better than the other but I do think some folks are more receptive to one form or another! Plus, you may need long term treatments! I do not know for sure, have no medical background, but it is something to discuss with your doctor! I wish you the best in your recovery! I think the above replay may be referring to Gambepentin or Neurontin for the nerve pain!

I agree my 6 year old found Gabapentin useful pain relief. She has seemingly random pains all over body particularly when tired. Rest seems the only other help.

Hi there, because you are in the area I would highly recommend seeing Dr. Gareth Parry, here is a link to his information http://www.fairview.org/Providers/Bio/D_120735. I am a liaison for the GBS Foundation in Ann Arbor, Michigan and had the privilege of meeting Dr. Parry at one of the Symposiums. Anything else I can do to help please feel free to email me ■■■■■■■■■■■■■■■■■■■■■■■■.


Get a new neurologist. I get IVIG every 21 days and have for 3 years. It keeps my pain under control, along with a Duragesic pain patch.

YES. Good God, go to the Mayo Clinic. I was in Boston and went to Mass General and Spaulding. That's like asking, "I'm spending the summer in Maine, should I have lobster?" (Well, almost)

I had more than one IVIG treatment and I can't tell you a thing about it because I was in a coma at the time of both treatments. I do own a copy of my 9,000 page medical records- something I recommend to all- so that I know exactly what was done. But it is true that after a certain amount of time additional IVIG is a waste of time.

I too have grown worse. I too have a hand hewn walking stick, though it was made by my great great great grandfather. In 2005-2006 when I was in the hospital with GBS I was told a lot of things that, at first, I believed. It is MOST important or you to know that at this point you could well know more about GBS than your doctors do.(I have learned that the less flexible and the less collegial the doctor, the more imsecure and the less schooled on the subject). I was fortunate in that my physicians used both my experience and willingness to study to help them to learn and to help them to prepare for future patients.

The bottom line, in my opinion, is that if you do not feel comfortable with this doctor; if you do not feel this doctor is really listening to you or serving you well; if this doctor is making you feel insecure then you owe it to yourself to seek different or additional care. Your relationship with your medical providers is going to become a regular and non stop oart of your live for the rest of your life.; And if you end up using controlled substance medications, as laws progress, you will be seeing doctors at LEAST once a month even long after those days of four to six appointments per week.

I've lived with the residual effects of GBS since onset in the summer of 2005 and I have been told that I will not get better; that I should only expect to get worse. I do not have the money or the facilities to provide myself with the care I need and most people do not. (or example, we ALL would do well with a heated in ground, covered for winter pool)

It is the fatigue (a ludicrous word) that has rendered me dissabled. I would gladly go back to my career with the severe pain, the balance issues, the loss of finger dexterity- I cpould deal with ALL of that. But "fatigue" is soimething that strips one of all power and control. How can one work if he is trapped in bed, unable to wake up and knowing that a four hour wstint of work is enough to leave one bed-ridden for many many days.

The consistent part of GBS is it's inconsistency.

So much of what you have said rings very true to me. I wonder what sort of treatments and care you have had; if there are any that I've had that may help you; if there are medications; foods; remedies; zen; chi; witchcraft; methods of amusing yourself; depression; careegivers- anything at all.

I love your city; I worked there three times, once at the Guthrie, again at the Orpheum and then at Univ of Minn/ Ted Mann. All three were short projects, less than three performances each but I had a wonderful time. Walking along feeling amazed that I could get from my hotel to rehearsal space and tyhen to the performance hall without actually going outside; a city of hamsters in tunnels. Then in summer just ass beautiful outside.

Anyway, I hope I've helped. Give me a shout if you want more help. ■■■■■■■■■■■■■■■■■■■■

Dave Seaman

Thanks everyone, I really appreciate your input! Calling my insurance company to check coverage for Mayo and other clinics.

What Dave said about the fatigue really resonated with me in particular. Does this make sense to others as well?

Bergerhoo said:

Thanks everyone, I really appreciate your input! Calling my insurance company to check coverage for Mayo and other clinics.

What Dave said about the fatigue really resonated with me in particular. Does this make sense to others as well?

findnonie said:

Bergerhoo said:

Thanks everyone, I really appreciate your input! Calling my insurance company to check coverage for Mayo and other clinics.

What Dave said about the fatigue really resonated with me in particular. Does this make sense to others as well?

NEF, You are so very lucky that these treatments weree all administerred so quickly. It is well documented that after a period of about 12 months- or within the time that they myelin shealthy begin to regrow- that IVIG is far less effect5ive.

When I was hospitalized in August of 2005, it took near4lyt 10 days to diagnose me. My family had beenh called in to wsay a final farewell. Three hours later a visiting neurologist happened to say, "you DID get a spinal protein level didn;t you?" This doctor saved my life.

The first IVIG treatment was administerred three days later. The second one four weeks after that.

Every soingle patiwent is different: the level of the illness, the reaction to treatment, but in regard to Mr. Berger, he is now more than a year away from his onset and IVIG is no longer effective. I agree with his doctors baseed on the extensive research I have done and the nearly nine years that I have lived with this disease.

However I am so very happy for you that you have had good results with treatment. There are many patients who come out on the other side barely efffected and some patiwents (my research swhows about 37%) who are forever debilitated by it.

I also agree with you abpout Mayo. I have discovered, over the past ne4ar decade, that non scientific or non traditional care is just as important. 50 % of pain management has to do with mind work. Body energy is very important though for those who learned the energy and response3 of their bodies prior to GBS< the transition is difficult because the body is not at all the same. As or worsening effects, stress p-lays a huge paert of it. It is my theory that stress is an important factor in the onset of this iollness.

During the weeks and months prior to the onset of your illness were you underrgoing any stressors, either heavy or jubilant?

Dave Seaman

Thanks everyone for your comments. I am going to the Mayo Clinic on Feb 4th. They initially were going to rush me in on March 31st. I called everyday to see about cancellations. I am familiar with the Noran Clinic and their sterling reputation, but thought I would go for the Mayo on my GBS sandwich. I will post after the appointment.