Do I have or not/GBS/CIDP?????
-
-
January 22, 2007 at 9:21 pm
Hi all :
This is my first post and would like to see what everyones thoughts might be.
First I live in Duluth, MN I tried to contact Dr. Parry at the UNV.of MN Fairview via his e-mail rec. no reply. But I rather thought that may be the case, I know he his one busy man. So let me go over what has happened to me.
In July 1971 got up one morring found I could not climb up a ladder I could pull myself up. Walk even fast would fall flat on my face, finally went to Dr. did all kinds of blood work nothing. They had no idea and at that time I am told there was no test so was wrote off to unknown virus. maybe 6-8 weeks later things were better but never the same. The get and go got up and left for one thing, all of a sudden scared of hight never was before, facial sweatlng worse. But got along untill about 1981-2 pain started becoming a
problem. For the next 20 years put up with pain from top to bottom 24/7.
That is when I started really seeing the Doctors nothing all kinds of blood work X-RAYS, CAT’S, MRI’s, BONE SCAN and on and on. Went though Mayo
Clinic zip! then in 95 had a car accident was very lucky and walked away from it should’nt have. But had our small town Dr. at the time just look me over just in case. Was telling him about my other problems he had me start
from the begining when done was no thinking about it he said GBS. He had
a few cases of it. Joints hurt legs and arms in the joints and in the muscles,
hard to hold arm up and out dor very long same with legs. Now sweating the last 10 years or more has really become a problem. If I do 10-15 minutes or more you would think by looking at my head or hair that I just got out of the shower and forgot the towel. top half of body is the worse with head and face
# one. Can not find a fix for this either. Nothing to go though 5-6 shirts a day.
I will stop here there are other things to but this sort of Hi-Lites most of the things. I know you can’t give me the answer and the fix, truthfully what started bothering me is I am not sure it is one of these two things. With my insurance I kind I am limited to where I go unless I wish to pay a fair part of it myself. So far we are ok but have to watch the money a lot closer than we ever had to.Open for any and all ideas or thoughts.
I will thank any replys now.
Sincerely:
silverhawkII
davewakefield@juno.com
David H. Wakefield
I do not mind or care who see my name, after 30 plus years it really don’t
make much difference. -
January 22, 2007 at 9:33 pm
Hi David and welcome.
You would probably be better off trying to see Dr. Parry’s associates first and then possibly he would see you. I know he is a very busy man and hard to get into to see. Many of your symptoms do sound like GBS, some others do not. Beyond CIDP and GBS there are also several variants to consider.You have had to put up with a great deal so I am sure getting this figured out would be wonderful. Good luck getting into see Dr. Parry or someone who works with him. Please keep us posted and take care of yourself.
Jerimy
-
January 22, 2007 at 11:13 pm
hi dave & welcome,
have you ever had an emg/ncv? a lumbar puncture looking for a protein count over 55? these are the primary tests for gbs or cidp [chronic gbs]. the other possibility in this area are residuals acting up. the cure for that is plenty, and i mean plenty, of rest. take care. be well.
gene gbs 8-99
in numbers there is strength -
January 22, 2007 at 11:42 pm
Dave,
First off, welcome to the forum. I live in Virginia, MN about one hour away from you. I came down with a very severe case of CIDP back in March of 2002, deteriorating very rapidly to a quad staus by the end of April 2002. I had been diagnosed with GBS at St. Marys Hospital in Duluth on April 4th, given 5 plaspheresis treatments, & sent home. It was after that I really began to deteriorate & was taken by ambulance to Rochester, almost completely paralyzed. But after a month down there I was rediagnosed with CIDP.After 3 months down there, I was told there was nothing more they could do for me, as I had the progressive form of CIDP & was refractory to all of the normal treatments. I switched from Mayo to Dr. McGee at St. Lukes in Duluth, who soon realized that I was beyond his care. After two letters, he got me in to see Dr. Parry at the U of M, who was finally able to help me. BTW I would strongly recommend Dr. McGee as a starting point if you suspect CIDP, as he is actually quite knowledgable about this illness.
I have been on this forum for over 4 years now, & read posts daily. I do not think you have or had GBS, but CIDP is still a possibility. Do you have weakness symmetrically in your body? Did your symptoms begin in your feet, or in your hands? Do you have numbness along with your pain? You talk a lot about joint pain, whereas most of us have pain resulting from damaged nerves. I am tired (fatigue is another major issue), but would be glad to help answer any of your questions if you would like. By now, I think I know a lot about this illness. Feel free to email me at [email]mhauts@mchsi.com[/email], or if you would rather talk on the phone, email me your phone number & I would call you.
Pam -
January 23, 2007 at 8:46 pm
Thank you all for the fast reply’s !!
First as far as the spinal tap is was my understanding after all these years
that is no longer a option?
I do get tired and exhausted real easy has been that way for many years.
Although in the last year seems to come even easier.
When I got what ever I got! On Friday night was just fine got up Sat. AM
we had built a new home and we were painting the out side ourselves.
Got over to the house about 9:00 AM this was in July and it was really hot and muggy. But I still felt fine but when I went to go up the ladder I could not lift my feet I had to pull myself up. I would guess from the waist down I had lost it. Was wrote off as unknown virus.
Pam I will be e-mailing you soon maybe we can talk the net is wonderfull but talking seems a little better way or perhaps just faster?Anyway many thanks for the quick reply’s.
Silver HawkII
Dave Wakefield -
January 24, 2007 at 4:35 pm
Dave,
You may have been one of the many that went undiagnosed prior to the Swine Flu scare in the the late ’70’s. That is when so much more info became available to practitioners about GBS. If it truly was GBS and you are having residuals (or as I feel they are at this late date, Post GBS) you may have some nerve conduction issues as well. Get thee to a good neurologist, I say. And search on here for Post GBS stuff and take it with you. And although it may be too late for a spinal and clear diagnosis, you might get some relief from neurontin and PT as I have. And charting this is important for your future health.
Good Luck and Welcome to the family.
Aslo, I have noticed over the years a very marked increase in sweating also. Ummm, never thought of it as related before. -
January 25, 2007 at 7:07 pm
Hi Natalie:
Thanks for the reply, I have been on Neurantin twice sorry to say it did not help either time. Also have had PT that to be honest I will leave open. I have also did PT twice but that part I may not have stayed at long enough.
After talking with Pam first I should say she called me I think we must have talked a hour or better, quite a Lady. I now really wonder if I had either GBS/CIDP? So now it is back and find a good neurologist. But you made me think with the Swine Flu thing. When I got this I was in the South Dakota
Air National Guard. Right after we moved to Duluth, MN in 1999 I either heard or read some people in the ANG for sure had come down with Polio like problems. We had over a time been given many shots for various things if we were to deploy overseas. I called the Unit in Sioux Falls, I was told there had been some cases of a virus like thing but If I remember right SxFlls did not have any problems. So i do not know if there something there with the shots we were given, I had forgotten all about this. So guess I will recheck this out. My Dr. in SxFlls was also the Medical flight Dr. for the unit so will see if I can contact him. Plus a nurologist that knows something about GBS/CIDP.Thank You for the Post. Untill Later
Silver Hawk II
David Wakefield -
January 26, 2007 at 8:26 pm
Hey Dave
Mason sweats really bad. He cannot take the heat. His body from the kneck down, is just getting where it is cold. It is almost like all of the heat has moved up in his head. His face and ears turn really red. His body temperature is 96.5. This causes very bad headaches. We have tried the neurontan. His feet hurt really bad too. His stomach keeps large amount of air in it.
Today Mason is having an IVIG treatment. This will be number 11. I just don’t know if they are working.
Nice to meet you
Trish
-
