6 months and waiting

Everyone’s case is different. For me, the IVIG did nothing for me, although I was in a medically induced coma and on a respirator at the time. They would bring me out of the coma long enough to see if it was working, which it wasn’t, so after the prescribed number of doses of IVIG, they had to wait 21 days, then started the plasmapheresis treatment, which worked in my case.

Was your father diagnosed with GBS or CIDP? According to most of the studies, the IVIG treatments only work in the beginning with GBS. They are, however, used as long term treatments for CIDP.

My GBS was reversed right away with my plasmapheresis treatment. I never recieved IVIG treatments – my neuro felt my GBS had progressed too far and wanted to “turn it around”, which is what the plasmapheresis did. The literature says that GBS will reverse itself when it has run its course – but of course that is different both in time and in severity for each person. I woulod encourage your neuro to admit your day, give him plasmapheresis, and get him to rehab when the plasmapheresis treatments are done. (It is often 5 treatments over 10 days). The time he is in the hospital will be easier on your mom, too. Caring for someone with full blown GBS is very difficult. Just keep working with your neuro and suggest plasmapheresis. Good Luck.

Dear Cathie,
[QUOTE]The literature says that GBS will reverse itself when it has run its course[/QUOTE] Where did you “read” this literature? All the literature I have read says there is an “Acute phase” that usually last about 2-4 weeks, then a “Plateau phase” where the patient becomes stable (gets no worse or no better), then the “Recovery phase” when the patient will slowly start to recover from the attack with no specific time – it depends on the patient; the damage done to the myelin sheath, the nerves, axonal damage, etc., but at best, recovery will usually take several months.

Best regards.

Jethro

Jethro –

The phamplet that the hospital gave us when I was diagnosd said that if left untreated GBS would reverse itself once it had gotten as bad as that particular case was going to get. It said that each case was different and while treatment would change its course early, if left untreated when the GBS got as bad as it was going to it would naturally reverse its course and the patient would begin to recover.

Of course, this is also the document that said almost 100% of GBS patients regained at least 95% and recovery could be expeted to be complete by one year. At 6 months the patient could expect to be “resuming the majority of their normal lifestyle”.

I am finding this phamplet to be more trouble than its worth – family is begining to ask, “Gee, you’re almost at 6 months – why aren’t you feeling better?” Well, I am better than totally paralyzed, but I’m sure no 95%!

This forum gives me more information, support and hope than any old phamplet!

The fact that your father is still getting worse, makes me wonder if it isn’t CIDP? He should go back in for a loading dose of IVIG & if that doesn’t work, consider solumedrol infusions or plasmaphersis. The longer he waits, the more damage he will sustain, & some could be permanent. Why doesn’t he want to go out in a wheelchair, most of us on here have done that, it’s not that uncommon; I don’t understand…

dwilfert,
[QUOTE]The past few months he has gotten worse. He can barely walk and his hands and arms are very numb.[/QUOTE] Why does the doctors want an MRI? In my opinion, but I am not a doctor, an EMG/NCS would be more appropriate than an MRI. Electrodiagnostic medicine is the study of diseases of nerves and muscles. Your doctor should recommended an EMG test to see if his muscles and nerves are working right. He can have problems in only one part of his body or throughout his body. The results of the tests will help his doctor decide what is wrong and how it can be treated. You may want to question WHY a MRI and NOT an EMG/NCS…just for piece of mind – Do not feel ashamed to ask doctors questions. Remember, your father is paying the bill.

Warmest regards.

Jethro

dwilfert,
[QUOTE]The past few months he has gotten worse. He can barely walk and his hands and arms are very numb.[/QUOTE] Evidently IVIg did work on your dad the first time it was given. It is my opinion that he should get another 5 treatments, followed with a monthly infusion of 400mg.

Why does the doctors want an MRI? In my opinion, but I am not a doctor, an EMG/NCS would be more appropriate than an MRI. Electrodiagnostic medicine is the study of diseases of nerves and muscles. Your doctor should recommended an EMG test to see if his muscles and nerves are working right. He can have problems in only one part of his body or throughout his body. The results of the tests will help his doctor decide what is wrong and how it can be treated. You may want to question WHY a MRI and NOT an EMG/NCS…just for piece of mind – Do not feel ashamed to ask doctors questions. Remember, your father is paying the bill.

Warmest regards.

Jethro

That pamphlet is probably giving an average of 6 months recovery over a wide range.

I am 6 months out from supposed “mild” GBS, and I can tell you that I may be doing the appearances of a “normal” lifestyle, working and taking care of my kids, but I am nowhere near where I used to be, not even close. I cannot exercise, am fatigued and in pain all the time, nauseous. I had held onto that time frame, 6 months, and that I would be good as new. I had a relapse into depression last week because I am not. So I advise everyone to take these “literatures” with a grain of salt and not put expectations and time frames on it.

You just have to take it one day at a time and there will be roller coaster days and setbacks. I will be feeling pretty good for a little while, then take a dip again. Of course everyone is different, but I just wanted people not to get discouraged if they don’t feel like their recovery is on track with what it says on the internet, etc.

Dwilfert, I agree with the others that you and/or your dad needs to be more aggressive in getting answers and look into CIDP. EMG/NCV is the best diagnostic, but maybe they want a brain or back MRI to rule out MS, etc? Your dad needs to follow up with the doctors/neuros asap.