Nancy

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  • April 10, 2015 at 6:32 pm

    Hi~~I live in the Houston area and signed up for info on a Houston support group and all I received was a reply email with Patsy Organ’s name and contact info and links to a bunch of literature. I have never been notified of a meeting. Back in 2002, a few of us arranged to meet one afternoon on our own in the Champions area. We had a nice visit but never met up again. If you are on Facebook, there is a very active group of GBS Survivors (that also includes care givers and CIPD) you might consider looking up.

    October 1, 2014 at 7:25 pm

    Hi~~I am 13 years post GBS and can only do so much each day. It is quite frustrating sometimes but I’m glad to have survived the hellish experience. I did have a mild relapse a little over a year ago that was preceded by gout in my left foot and dehydration. Thankfully, I was admitted to the hospital quickly and after being re-hydrated and filled with drugs, the symptoms and paralysis began to diminish. I have learned that this is my “new” normal and adjust my activities daily. My neurologist told me back in 2001 to “listen” to my body and rest when tired. Even if I just sit down and put my feet up for a little while helps. I can not imagine what life would be like with 2 toddlers to look after while my body is trying to recover from GBS. Bless your heart. I remember sleeping A LOT for about the first 2 years out of physical and occupational rehab. My best advice is to not yearn for what you were but to embrace what you have now and do the best you can each day. When you think you’re the sickest person in the world, you’re not. There are so many others worse off than you and this is just a speed bump in the road of life!! Take care!

    May 8, 2013 at 11:42 pm

    Hi…I am 12 years post GBS and I have finally accepted the fact that my life will never be the same again! I now have a NEW normal! Yes, it is VERY frustrating to get fatigued so easily but I’m also still alive to be able to complain about it!! Each day is a new adventure and I know when I can go, go, go and when I have to stay home and rest. It is not always fun but each day alive is better than the alternative, right?! Just listen to your body and know your parameters. You won’t be climbing any mountains or even be able to spend an entire day at DisneyWorld without getting tired but you can live a full life within the confines of what your body will allow. If you harbor on the negative aspects of what GBS has done versus trying to achieve what you CAN do, life will not be very much fun. I always look for the pluses in life. Sometimes it is very hard but there is always something…always! Take care!

    September 24, 2012 at 11:58 am

    Hi there!

    I am 11 years post GBS and I still have residual weakness. I am able to walk unassisted but I move slowly. My legs still ache sometimes. Take a couple of Tylenol and that helps! I’ve just accepted it and moved on. I’m glad GBS is part of my past. I was on these forums a lot years ago but now just pop in occasionally to see what’s going on! Life DOES get better and your body WILL improve but it will take longer than you ever expected! I am just so thankful that I can walk on my own and can do for myself again! Keep hope alive…it will get better!

    January 31, 2011 at 5:36 pm

    I get pain in my calves…primarily my right side. Almost feels like DVT’s but as soon as I quit moving, the pain goes away. GBS has robbed me of my ability to walk for very long but at least I am still ambulatory!

    January 31, 2011 at 5:19 pm

    I had purchased LTD through my employer and it kicked in after 6 weeks of STD. Once I was discharged from the hospital (after 3+ months) my LTD carrier told me I needed to apply for SSD. I did and was approved on my first try. When I received the first BIG check from SSD, I was told I had to repay the LTD company as SSD went back to my date of admittance into the hospital. I would much prefer to be a productive working member of society but most days, there is no way I could work 8 hours. I must rest at least once a day…more often 2 or 3 times. GBS stinks but I’m damn glad to be alive!

    December 14, 2009 at 4:06 pm

    I was diagnosed with GBS in August 2001 after having a kidney transplant in May 2001. Now, in December of 2009, I [U]still[/U] feel different. I have occasional bouts of fatigue and have learned to “listen” to my body. When I am tired, I sit down. My stamina is very low and I get tired walking very short distances. If I stand still for a few minutes, I can move on but not for very long. It is very frustrating and I get angry but this is my life and I have made adjustments. And it has been hard on my family but after all these years, they have adjusted too. GBS is a horrible illness and is merciless but I thank God I am alive to be able to tell you all this!

    September 30, 2009 at 9:57 pm

    I had the vaccine about 4 years ago while in the hospital and had no problems. I was in the hospital and rehab last year and contracted pneumonia while in rehab. I was under the impression that it was a one time vaccine but I was wrong!

    January 5, 2009 at 12:02 pm

    Hi-

    I was diagnosed with polycystic kidney disease in 1996 and went on dialysis in 1998. Since I was an End Stage Renal Disease patient, I qualified for Medicare after being on dialysis for 2 months. Since I was working, it became my secondary. I had a kidney transplant in May of 2001 (and it’s still tickin’!). In August of 2001, I was diagnosed with GBS and when I got out of the hospital, I contacted SS to begin the application process for disability. (During my hospital stay for GBS, I was terminated from my job as I had exhausted my FMLA.) I was approved on the first try and have been on Medicare since.

    From reading your post, it seems that your employment is what is inhibiting you from qualifing for disabilty and Medicare. I received LTD from my former employer but when I qualified for disability, that stopped. Attempting to live on disability is tough. It’s about 1/2 of what I was receiving on LTD but Medicare is [U][B]WAY[/B][/U] cheaper than COBRA!

    I know all too well how dealing with the government can be but once you’re in the system everything runs smoother. Just keep good records and COPIES of EVERYTHING you send to them.

    October 26, 2008 at 8:52 pm

    I started taking Topamax when Neurontin stopped working for me. It did not do me any good so I went back to Neurontin and I guess the two week vacation from Neurontin did the trick as the medicine began working for me again. I’m lucky now that I do not need Neurontin anymore. Now when I feel pain, I take Tylenol, Naprasin (sp?) or Vicodin, depending on the level of pain. I also take life easy. I try very hard not to do too much in a day. When I’m tired, I sit down and usually fall asleep!! 😀

    October 21, 2008 at 1:11 am

    Hi Jim-

    I fully understand the frustration working with the government. I never knew they’d take benefits away just because you came into some money. I’m sure it would be VERY difficult trying to get independent insurance having had GBS. I got disability on my first try but I had many other problems besides GBS but a very good friend applied for disability with chronic pain and other problems and was turned down twice. She finally decided to get an attorney and go to court. She won her case and was granted disability. She contacted a lawyer she saw on TV. She said his commercial had the least amount of screaming! 😀 At least go for a consultation – they may be able to tell you if you stand a chance of winning.

    August 27, 2008 at 10:38 pm

    I had the campylobacter jejuni bacteria. I had eaten in a restaurant and the doctor’s therories were that there had been some cross contamination from unclean working surfaces, since I had not eaten chicken. I had also had a kidney transplant in May of 2001 so my immune system was suppressed—which did not help!

    June 23, 2007 at 10:32 pm

    Hi-

    I’m approaching my 6th anniversary and still suffer from fatigue just as you. I have learned that if my body wants to sleep—lay down and do it! I have some neuropathy in various places on my thighs but, hate to say, I’ve gotten use to it. I haven’t seen my neurologist in a couple of years but feel fine. She did the dreaded NCV test and an EMG last visit and it hadn’t changed in a year. I read an article awhile back that said researchers had found that Neurontin had been found effective in the “treatment” of hot flashes in menopausal women so now my gynecologist prescribes it!! I’m down to 200/mgs a day and will probably back off it once the flashing finishes—whenever that happens!! :confused:

    Take care—each day is an adventure!

    February 2, 2007 at 8:31 pm

    I have neuropathy on the outside of my thighs, some spots on my lips and on the edge of my tongue. I have had this since the onset of GBS and I’ve just gotten use to it. I do not remember if there was a metallic taste as I was so drugged when I was in the ICU that everything is a fog! 😮

    February 2, 2007 at 8:19 pm

    Abby is correct. In Texas, if you’ve had uniterrupted coverage, they must cover you. They may put you on a 90-day probation period but often will not since you’ve had continuous coverage. Insurance is so wonderful but you have to be your own best advocate and be educated. Just like what you’ve done with this post—if it seems odd—ask questions. I always ask for something in writing and ALWAYS get the name of the person you’re speaking to. If you do not received something that you’ve requested within a 2 week period, I will write a letter stating with whom I spoke to and the date and exactly what I requested. I also learned that it’s usually to your advantage to leave to the company insurance person (your fellow employee) out of the loop. I always spoke directly to the insurance company.

    Good luck,