azgold
Your Replies
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July 15, 2015 at 7:39 pm
Hi, Jerkbrown. Yes, all your symptoms are very familiar to many of us. I know that my case sounds almost identical to yours.
Try not to stress over the residual symptoms. I left the hospital after 4 1/2 months, on June 12, 2012. It has just been in the last 6 – 9 months that I have become more comfortable. My diaphragm has finally started to loosen so I can breathe better; my worst eye now only has occasional bouts of photo-sensitivity and looking blood red; nerve pain and muscle spasms are at last greatly reduced. Also, my teeth no longer throb on my weak side. 🙂
While I still have some residual paralysis on my right side, I would estimate that I am at least 90% recovered. That includes my memory, speech and critical thinking issues, which are almost back to normal. The same will likely happen for you!
Oh, and don’t you believe that hogwash about not improving after the 3 year mark! I HAVE made progress beyond that time frame and I continue to notice improvements. After a long time, plateaus can last several months and progress is more subtle but it does continue to improve.
I still have ‘days’ but now they are fewer and farther between. Sometimes months apart. Symptoms will flare up a bit when I am especially tired.
So, I know you’re uncomfortable right now but please don’t get discouraged. It does get better.
Sounds like you have a terrific support system! That, in itself, is a wonderful tonic and something everyone needs during recovery. I’m sure they will celebrate your milestones as you continue to improve.
When you’re up to it, you can try reflexology on your feet. I had a couple of sessions. Having the foot muscles massaged and stretched felt wonderful! Loosened them up, even if only temporarily. Same goes for massage therapy (only use a therapist familiar with treating GBS, they’re out there), which can make your muscles feel loosey-goosey fantastic! It can remind you of how you felt before the dreaded GBS hit.
Anyway, hope your recovery moves quickly and smoothly! I’m certain that all your hard work will help you get there.
Regards,
ShirleyJuly 15, 2015 at 7:17 pmJim-LA, I don’t think anybody who has had GBS should EVER have a flu shot. I know that my doctor will not give me one. Not that I ever got them, anyway.
Since I got GBS, some members of my family will not take flu shots anymore, either. They are afraid that they could get GBS too because we share DNA.
Jerkbrown, I agree with you about anyone trying to help should be treated with respect.
May 23, 2015 at 7:49 am@MacKay1, thank-you for speaking up! I hadn’t heard (read) of this happening to anyone else (misery loves company :)). Also, didn’t know what to call them…still don’t.
I hate them for the same reason – they age my hands about 20 years.
Have you showed any medical professionals and did any of them know what it is? My uneducated assumption is that it is a weakness in a blood vessel or artery wall….BUT….how would GBS cause that to happen?
May 21, 2015 at 2:26 pmHi, Miles. Welcome to the GBS club. 🙂
The symptoms you describe are very typical. And the doctor is right, there is nothing more he can do for you.
I was concerned to read that you have a lot of stress in your life. Stress is something that is bad for GBS patients. I was warned to eliminate ALL stress, which is impossible, of course.
It has now been 3 years for me. I’m still not 100% recovered but probably 80 or 90%, at least. The fastest way for me has been to do as many ‘normal’ things as normally as I possible can. That helped a lot. Some things really caused some discomfort but only the first time or two that I did them. Everything I did helped. ****> CAUTION: Do NOT overdo it! <**** Push yourself a bit but not to the point where you will harm yourself or have a setback.
You’ve got to listen to your body right now, it’ll tell you what you need to heal. If you’re exhausted (typical symptom) then rest between activities. Find a way to reduce the stress in your life, or at least the intensity of your emotional response to it (meditation? yoga? something else?).
Re the appetite, that was a big problem for me, I was NEVER hungry, didn’t want to eat. When you’re feeling like that, try ‘grazing’ nutritious foods and beverages.
Re the ALA that Jim mentioned in the post above, I did try that but it gave me heartburn and nausea, so I stopped. Others on this forum are trying it, I know. Not sure about the outcomes. I’ve not read about it affecting anyone else the way it has me.
At the moment, I am trying lecithin softgel capsules (1200 mgs once or twice a day), coconut oil capsules twice a day, and Stress-Relax Mental Calmness chewable tablets (100 mgs twice a day). Have been on these a month or two now. I think the coconut oil is helping not only skin and hair to return to normal hydration but I really think it’s helping lubricate my joints. My knees are still bad, so I’m grateful for any help there. Can’t really say that I’ve noticed anything in regard to the lecithin use.
The Stress-Relax, I only picked up a week ago but I think (maybe) it’s starting to help. One of my lingering symptoms is sudden anxiety – hits out of the blue, so I’m really hoping this will calm that down a great deal.
Stay calm and keep getting healthier. You stand a great chance at full recovery, Miles. It was caught early, so have a tremendous advantage over most of us.
Good luck with your recovery!
May 21, 2015 at 2:01 pmDitto on the memory problems. Also, I had a great deal of word-finding issues, would say, “Ummmm…” a lot, like I hit a skip in speech. And that was after I was finally released from hospital and off all meds. It was accompanied by a physical sensation – felt like my brain ran into a solid black wall. Don’t know how else to describe it.
It has been 3 years for me and it is finally improving. Guess it has been for the past year or so. Now, it happens in a less dramatic fashion when I’m tired.
GBS may not directly affect the brain but I challenge anyone who says it has no effect whatsoever. GBS attacks the nerve myelin, which facilitates communication between the brain and body. The actual brain matter isn’t damaged but the nerves going to it are.
I think the only people claiming that GBS does not affect the brain are those who haven’t had GBS. 🙂
April 4, 2015 at 9:32 amForgot to say that my eyes were affected – incredible sensitivity and some blurring and double vision but no one mentioned Miller-Fisher to me, so I’m assuming I didn’t have it.
April 4, 2015 at 9:30 amI wasn’t on prednisone (or any other steroid) and I still, 3 years later, sometimes get the jerky movements in my hands, only when stretching or moving them. It’s aggravating! Luckily, that has improved to the point where I only have that now when I’m tired.
Not sure if it makes a difference but I had GBS, not CIPD. At least as far as I know.
April 4, 2015 at 9:24 amBeing labeled ‘disabled’ is only helpful when applying for disability benefits. 🙂
April 4, 2015 at 9:22 amI am so very sorry to hear about Richard’s passing and what you have been going through. I’m afraid that I have no words of enlightenment for you. It sounds like the hospital was quick to dismiss him but I am no doctor and really shouldn’t judge that. As GH pointed out, medical professionals aren’t perfect and they don’t like to lose patients but still, Richard’s case sounds tragic. It may be cliche but the good news is, of course, is that he is no longer struggling and suffering.
My heart goes out to you. I hope that you are able to find solace somehow. As long as you remember Richard with love, he will live on through you. I know that sounds corny but I believe it. You’ll remember the good stuff, talk about him – share him with others. Over time, the pain will lessen but you will never forget him, no matter what or who comes into your life.
Take care.
February 28, 2015 at 2:28 pm@Jim-LA – you find ALA helps reduce recurrences of GBS?
I tried it and got horrible heartburn, so stopped. But if it will help ensure that I never get a recurrence, I’ll suffer through the burning. I haven’t got another trip to GBS hell left in me. And I’ve only had it once.
February 28, 2015 at 2:21 pmMine are not paper thin but a few of them persistently split at the ends once they get to a certain length. They also curve down once they get longer than my fingers.
I’m not sure that it’s GBS per se; rather a sign of our body’s general health. I wouldn’t be surprised if the trauma/meds plays a part in that, as well.
Think I read that these sorts of things are indicative of a deficiency in certain minerals or vitamins. Have you researched potential solutions? Seems to me that splitting is related to zinc but I can’t remember for sure. I’m sure that there will be something related to thin fingernails, if you search a bit. And if it is a mineral/vitamin deficiency, it shouldn’t hurt you to try remedying it.
Just throwing that out there for consideration.
February 28, 2015 at 2:11 pmI only use Firefox but I’m not having any issues.
Sweet relief after not being able to access the site for so long.
I’m getting the distinct feeling that nobody takes much care of this forum.
February 22, 2015 at 7:06 pmNo kidding, Jim! Like anyone with GBS needs any more weight loss!
February 17, 2015 at 9:06 pmYup, I lost hair and my scalp was covered with a thick layer of…something, I don’t know what it was. And the itching was awful.
My hair and scalp started improving about ten months in, after I took myself off all my meds and started to improve overall. As my scalp got better, I started growing new, healthy hair.
I was 57 when I was diagnosed, too. I’m also female.
February 17, 2015 at 8:46 pmThanks, Jim. I only use Firefox but I’m sure it’s the same for both browsers.
