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Living with Polyneuropathy CIDP, GBS, & CMT

GBS Should I get another IVIG treatment?


#1

Hello: I was diagnosed with GBS in late March after bouncing around two hospitals for two weeks. Finally after being discharged with three possible diagnoses I went to the neurologist who identified a neck issue a couple of years before. He gave me the EMG and immediately put me in the third hospital for IVIG for 5 days. It didn’t seem to do much. That was 4 months ago. I am now walking, albeit painfully and slowly; I have little use of my right arm, my knees are numb, I have lower reflex at my ankles, but none in my knees, I still have numbness in both arms and what feels like a band around each arm just above the elbow. The pain at this band (more discomfort and weirdness than pain) seems to be getting worse. I asked the neurologist if it meant I was having another attack or becoming more sensitive to injury from the original. He did not know and told me he would ask the insurance company for another IVIG. What should I do. Should I go back in the hospital for another 5 days for a treatment that did not seem to help in April? Or not? Maybe the April treatment kept me from having a more serious attack. I never had any breathing issues. I did have double vision but that has now healed…Thanks for reading…


#2

Waterfish

Whether or not to continue or receive treatment is definitely a decision that requires communication and discussion with your family and doctor, so I won’t make a recommendation one way or the other. Additionally, each person’s experience with GBS is unique, so what works for one may not work for another.

What I can say is that my experience with GBS meant intensive rehabilitation (physical and occupational) for 6 months following my 2 month hospital stay, and about another year of on-going rehab. It was a SLOW process, and hard work. There are still some areas where I experience discomfort, weird sensations, numbness and pain, but nothing I have not been able to overcome and/or live with these past 30 years.

I hope you are able to receive the treatment and rehabilitation that will make your recovery faster, less painful and complete. Stay positive and remember you are in control. GBS is part of your life now, but you get to decide how big a part it gets to play!


#3

Charlotte thank you for your caring reply. It is late and I will respond in detail tomorrow but I am thrilled at your advice. That is exactly what I wanted to hear thank you for the inspiration


#4

My arms feel like they have a ring around them above my elbows. As time goes on I am more aware of it. I don’t know if I am having another attack, or if I am just getting more sensitive to the original damage. That is why I am undecided about another IV therapy treatment.


#5

Waterfish, I am in my 5th month of GBS, CIDP, I also began in March of 2017. We have some similar effects. I have had two relapses. I could not walk because as I lost the use of my legs. I had multiple plasmapheresis treatments (31 in total so far). Originally and After each setback I have five treatments over 10 days. Since my last relapse (April 17’) I have continued on a regiment of two plasmapheresis treatments a week. I am now beginning a once -a-week regiment to see if I can tolerate life. I have not been able to go two weeks without a treatment, because twice I have relapsed because they were spread out to far. I also take Cellcept (tried imuran but could not tolerate it) which we hope will eventually take over for the plasma treatment.

I also experienced similar numbness as you. I was numb from foot to mid thigh (which really caused balance issues) and from hands to mid bicep. The bands are a perfect way to describe it, especially in my feet. With numb feet it felt weird wearing shoes as if felt like my socks were bunched up inside. Even though they weren’t.
With the plasma treatments and rest the numbness has alsmot subsided. Still a bit in my feet. Remember they are damaged nerves so if you do a lot they dont get time to heal. It took me two relapses to obey my doctors orders and use complete rest to allow healing. So far so good. Although its hard to stay off my feet.
Hang in there and keep asking your doctor lots of questions.
Andrew


#6

Waterfish, As I continued to recover, and areas began to improve, it seemed to bring into focus areas that were slower to recover. I was hypersensitive and hypervigilant. Every twinge, cramp, tingle and sensation sent me into overdrive. If I slept wrong and my hand, foot or arm fell asleep I woke up in a panic; was it happening again? what should do? Slowly I began to react a little more rationally. I would take a deep breath and think “what’s really going on here?” It took several years for me to stop obsessing about future relapses. I really think I would have benefited from some therapy, but my parents didn’t believe in it, and as I was 17, they were in charge.
That being said, once I started fully living MY life again, not life with GBS, things greatly improved. I stopped living in fear and lived for the day, because none of us really knows what the future holds anyway. I didn’t, and don’t, want to miss a thing.
I hope you can continue to recover and get back to YOUR life!


#7

So sorry to hear things are still problematic for you!
My 2 cents is to obtain another Neuro Opinion , preferably from a Neurologist or Neuromuscular specialist who has Hospital privileges at a Tertiary Hospital (eg. a well known and respected University level hospital even if it means having to drive a distance to get to).
Call hospitals at this level in your area to ask for the names of Neurologists and/or Neuromuscular specialists who have privileges at the Hospital so that if further admission is recommended for any reason (eg. if you elect to try another round of IVIG or Plasmaphoresis) it won’t be a problem.
Obviously, I can’t say whether said Hospital or provider takes whatever medical insurance you may have but you’ll never know unless you obtain a name and phone number.
Also do a search for Neuro specialists online with GBS treatment experience to see if there are any not too too far from where you live.

Based on my own experience, I finally found a Neuro who recognized the signs of GBS as I described them to him and, more importantly, had treated other patients who had that diagnosis by asking my friends and coworkers if they also knew of anyone. Turns out he admits patients to UCLA Medical Ctr here in So California ( NOT near where I live) BUT found out he didn’t accept any medical insurance. To me, it was worth paying to see him as a Cash Account (see if the office can provide you with any sort of a discount OR offer a payment plan if necessary). Be sure to obtain a copy of your office and esp your past Hospital records ( Admit and Discharge Summary if nothing else) to take with you to whoever you ultimately choose to see. Hang on to your records!

Go prepared for office or clinic visits with questions you seek answers for. The response back to you should be pretty telling. The more detailed, the greater the experience and the better it is for you in your situation.

I don’t know what sort of relationship you have with your current specialist but definitely ask him if he knows of any experts that you can be provided a name and phone number for. Any specialist worthwhile shouldn’t hesitate to provide that info to you- no one can know everything about a uncommon diagnosis like GBS/GBS after effects (if that is what you actually have medically now) . Tell him or her you need help in obtaining another opinion (even if it means having to drive a distance to be seen) before deciding on another round of anything.

I was late diagnosed in 2009, 4 months after the worst of everything had already hit me. Being misdiagnosed then directed to see a Rheumatologist for further care that I was warned would likely take 6 mos or longer just to get an appt to be seen didn’t help matters. I persevered for as long as I could. I remained steadfast in knowing the problem was Neuro from the outset despite the Neuro I initially saw who told me I had Fibromyalgia of all things. Testing was finally done as directed by the Rheum that definitively confirmed I was right all along. The Neuro that did the actual testing answered my direct question to him at the end of the EMG/Nerve Conduction testing done as to what did he think the results showed- he told me GBS.
Unfortunately he refused to let me transfer my care to him- the need to get referrals ongoing from his Rheum buddy was more important to him than actually helping me, a patient he had just confirmed I had GBS.
Also unfortunately for me, it was far too late to be considered for IVIG or Plasmaphoresis and as a result I was never given any treatment at all. And, yes, I do have residual muscle damage as a result that resulted in my having to drop out of the work force years before I would have ever thought I would. Having an employer who told me I had to return full time or not at all didn’t help. I wasn’t up to fighting 2 battles at the same time so I reluctantly had to let that go.

Sadly, I think the treatment for GBS is the same now as it was 8 yrs ago when my life physically fell apart- IVIG or Plasmaphoresis. All the more reason to seek an opinion with a specialist who sees patients in a large Tertiary level Hospital should the need arise once more.
I also strongly encourage you to have your current Neuro provide you with scientific treatment outcome data that supports the medical need for further IVIG or Plasmaphoresis after having already been tried on either one in the past- all else fails, have your primary MD take a look at the data and “interpret” for you. .

Best wishes in your journey - and it is a journey as I and many many other folks participating in this forum can well attest.


#8

Hello Everyone and thanks for your kind replies to my inquiry. Based on advice from some of you, I went back to my neurologist and told him I wanted another IVIG. At first I called and left the message and there was no return call so I wrote him a letter, faxed it and emailed it. I got an immediate reply. He scheduled an appointment and gave me the usual neuro tests and then scheduled another EMG. I just got back from that. I have asked for the data and he will supply it. His assessment was some damage to my right quad thy and my right triceps. However, he compared my results from my first EMG back in March and said my nerves were remarkably better. He thought another IVIG was not necessary at this time. I am much better, stronger, but still have numbness in my integumental sensory nerves in my right forearem, left triceps, and around my knees both sides. He tested nerves and muscle. Once I get the raw data I will seek additional opinions… Any comments welcome.


#9

Waterfish, check ôut the GBS čènter of excellence clośèśt to ÿou. They can bè łoçáted on the www.gbs-cidp.org webśite.

I was diagnosed áñd treàted to 5 ivîg añd oñe plásmaphersis treatment baćk in
March


#10

March of 2014. The biggeśt issue for me hás been findiñg providers Thant knèw about GBS, łet alone actually treating a GBs patient". Ànd pleaśe forgive my môuth stylus induçed typiñg errors. I am still à GBS quadriplegic.


#11

Thank you for taking the time to read my posts. Almost everyone that I have talked to has had more than one. I had one. Asked for another and got an EMG eval and a suite of blood tests. The result of the EMG was encouraging. The Neuro said he thought my never condition was much better, and significant atrophy in my right leg (quad) and right arm (triceps). I have been on statins since 2010. I know I lost considerable muscle mass from statins. Almost wonder if statins made me vulnerable to GBS. My neuro currently has two other GBS patients. He seems very knowledgeable about it. In fact, he diagnosed me after I spent two weeks in two different major hospitals in Tampa. He went right to GBS after an EMG. Neither of the hospitals gave me an EMG. I couldn’t get a spine tap as I was on a blood thinner (effient). I think you and I got hit the same time (March). I am sorry for your condition. Is there anything I can do for you… Thanks again.
Oh yeah, I was contacted by a regional member of a GBS group. He gave me his contact information and said to let him know if I needed anything. Thanks again and best wishes for a healthy recovery…


#12

Nerve condition, not never condition…sorry always errata…