Is it my IVIG wearing off or fatigue?

Shawn,

It is definitely possible to overdue it physically. I just posted an article from the Communicator called ‘Whats in a Name …….” under [I]FAMILY MEMBER IN DESPERATE SITUATION[/I] by Elisa. This may be of help to you.

Hi Dr. Shawn: I have definitely gone through this. Last week, going to the mall with my wife, I had to get a wheelchair for the first time in a year because I had overdone it so much my legs were too tired and painfulf or me to walk at all. The thing I have seen so often is that our neurologists look for strength but not endurance-at the doc’s office I can walk and look just fine, but if he took a 15 minute walk with me he would notice a limp and stumbling gait. So it could definitely be fatigue and overdoing things. Hope you feel better soon and, as so many have told me so often, get a lot of rest. Lying down flat is essential for me. Good luck. Jeff

Dr. Shawn, You sound like a horrible patient 😀 Listen to us, please – rest, rest and get some more rest! Please.

Dr. Shawn,
I had a MILD case last August and I still get the frostbit painful feeling in my feet and shins when I get tired!!! Hope you are resting and starting to feel better!!
Best wishes to you…

Dr. Shawn — how are you doing????

Thanks for letting us know!! I hope your ivig treatment will give dramatic results again!!!
Hang in there….

I personally tire of all the “guesses” by medicine. There is no “time line” for healing. Each body is different!! All to often someone is told they won’t heal or it will be x number of years or you’ll die with in X. I was given less than 5 years and 7 years past that “guess” I am still here 😀 Be faithful to the modalities that you feel will make a difference ~ excellent nutrition, yoga or water therapy, acupuncture, massage, your spiritual practice and REST etc, etc! Only with time will you know what and how much will heal. Namaste’

Dr. Shawn said “I have been overdoing it.”

Sounds to me like you have an attitude there, Shawn. Are you a macho kind of guy? You don’t want to take crap from any stinking disease? Badges, you don’t need no stinking badges? LOL This GBS will kick you ass and make you a humble person! Lifestyle change # 298 in the GBS handbook: more serious consequences from “over doing it” (probably more so than at any point in your life).

Remember, energy resource management and set “red flags” for yourself- for me, I know when I overdo it because a few muscles in my face twitch to let me know I need to rest.

Hugs,

Matt

Hi Dr. Shawn,
Don’t know if this should be another thread, but per your question ‘anybody else with axonal form of GBS’–my 11-yr-old daughter was just dx with axonal form of GBS, and neuro told us approx 30 weeks to regenerate nerves. The onset of her disease was approx Feb 6-8, about a month ago, following bad flu.

Because many of her tests at that time showed nothing–no elevated protein, EMG/nerve conduction normal, reflexes normal, MRI normal–and she didn’t get worse after 6 days in hospital (never progressed past her legs, thank god), they sent us home with a diagnosis of leg weakness/possible mild GBS and said she’d be fine in a couple weeks. Well, she’s no better. Fatigue improved, but not normal energy. Her reflexes have diminished. And the walking is miles away. They haven’t given her IVig. Last Friday March 2 they said if no better in a month, they would do another EMG, and then possibly follow with IVig. I called the office yesterday and asked why wait for IVig, everything I’m reading says do it NOW. They are supposed to call me back today.

My question for you, how long has it been since you came down w/ GBS? It sounds like you’ve been at this a while? What led to the axonal dx in your case? (Maybe I should find another Dr for 2nd opinion? Where would I begin? We live in Cincinnati, if anyone has ideas.)

God bless you. It must be hard going through this with young children to care for. I hope you have some help?

Elaine

elaine,

an emg/ncv recording both the f & m waves, done by a competent gbs neuro or neuromuscular doc, will show where there is axonal damage & where there is myelin damage. take care. be well.

OH SE Ohio in Zanesville Dr. Robert Thompson 740-453-0680 . He currently has at least 2 of us as patients. I believe that the more of us that go…[he] will know how to treat us. I was also on the Rehabilitation Unit at Genesis Good Samaritan Campus (hospital) 800-322-4762 in Zanesville, Ohio. They were absolutely the best. I was referred to Ohio State but was extremely dissappointed in my exam there. Zanesville has great hospitals. I was treated at Mount Carmel East in
Columbus and got great care there.

*NOT recommended – Clevland Clinic* I have seen about 10 GBSers at Clev clinic and could not recommend a single Dr. Not because they are not good but because none of them impressed me. If your ins. will ok you to go to University hospitals (right next to the clinic) I would highly recommend you to go there. The whole neuro floor is fantastic.
a 2nd gbser says no go to clevland clinic – i wouldn’t go back to cleveland clinic, they did nothing to give me a second opinion except run the same emg/ncv and sent out 2 teaspoons of blood for muscle disease testing, and ran a urine test without me giving them a sample–surprise it was normal. my neuro was upset that a well known clinic like cleveland.
3rd post new info as of 6-06. FYI the head of neuro at the Clev Clinic was let go. The news is the new head that will start in Aug and will make many changes.

In Akron call Akron General and ask for Dr Harvey Friedman. He was my Dr 23 years ago and in my opinion one of the most knowledgable in GBS. He has had at least 100 patients. a 2nd gbser agrees he is good.

Grove City area There is a new Nero. Dr. Taylor who is supposed to be good.

gene gbs 8-99
in numbers there is strength

Hello Dr. Shawn I’m in Little Rock and I know a great neuro here. Dr. Alonzo Burba. He knew right away and jumped on my GBS ASAP. He was up at the MRI getting a third one at 4am. The next day by noon he had a spinal puncture, started the plasma pheresis and IVig. I still had to get the vent but it wasn’t his fault.
Good Luck
Tim
If you would like my number just ask

Hi Dr. Shawn
Sent you a post. Look under, Help first time in.
Thanks,
Peggy

Dr. Shawn, glad to hear that you had a good day yesterday. The IVIG tends to give me some extra energy for a day or two afterwards at the very least. With GBS/CIDP when you have a good day you definitely appreciate it. Hope you continue to get better each day 🙂

Jerimy

[quote=Dr. Shawn]Just finished my last ivig yesterday. Walking/ strength much better-whether it is from the ivig/rest/no PT I just feel blessed. Even went to Walmart and didn’t use the motor cart. Starting back tomorrow with PT and I will strictly “mind” my PT and do only what I’m told.

Iowagal, I saw that you have been to mayo. They are currently setting me up. Do you have any neuro you recommend?

Thank you, Dr. Shawn[/quote]