New here and looking for advice
April 7, 2015 at 9:28 pm
Hi. I am new here. I am a 40 yr old male And I started having symptoms of GBS on 12/18/13 and was hospitalized about 2 days later. I seemed to have been lucky in that I started to receive treatment before needing to be put on a respirator and was actually able to walk out of the hospital with a cane 6 days later. However I have yet to feel normal again. I have tried all sorts of vitamins and PT and have even switch neurologists in the hope of getting a better answer than “well you can walk now so not much else I can do.” But I just am always having one issue or another I have of course have a variety of nerve pain, fatigue and exhaustion but have also had a regular metallic taste in my mouth, body temperature control issues, some emotional issues and frequent fluxuations in my appetite to name a few. My most recent neurologist, although much more attentive then my first still seams to have the attitude of “unless you are currently having a GBS occurance there is not much I can do for you.” I have a variety of stress in my life as I am a single father with a teenager and have a mildly high stress job in a law firm and it seems that unless I keep my stress levels down my symptoms get worse.
Has anyone else had similar symptoms? Has anyone found a good balance of vitamins or diet that seems to help?
I realize that I am a little over a year out and was very lucky to not have had a worse bought of GBS as I many have had but it is very disheartening when I have a flare up of a variety of symptoms that my neurologist and General practitioner just seem to shrugs there shoulders at and say all your test and blood work come back normal.
thanks for reading this.
April 8, 2015 at 9:24 pm
GBS is one of the rare neuromuscular disorders that often hangs around for a long time. I still have tingling and numbness since 2008, but my GBS was complicated by CIDP and MFS. The good news is that our bodies can often repair modestly damaged Myelin. Myelin can grow back at the rate of 1 millimeter a day, which is only 0.0032808 ft, this is agonizingly slow but there has been little that can be done to speed up the process.
There is no quick fix and most of your symptoms should go away or diminish to a large extent over time. The time depends on the individual and many members here have reported getting the most recovery after approx three years.
You might look into taking the supplement Alpha Lipoic Acid (1200-1800MG per day). There was a recent clinical trial at Oregon State, but the results haven’t been posted yet. This is the ALA I take:
Other members have found various supplements helpful for them. Try using different search terms to help you compile a list and then you can decide, along with your doc, what to try. Best of luck with your recovery!
May 21, 2015 at 2:26 pm
Hi, 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 22, 2015 at 12:36 pm
Miles74, I finally found someone else with the metallic taste ! Could never find out why. Doctors do all the blood panels and they all come back well, no deficiencies. Did you ever get results of why from anyone ?
May 22, 2015 at 12:47 pm
Mackay1, nope i have never found out why. Even asked my dentist about it and he just kind of shrugged it off. I have that taste that will come and go every now and then. I also have it where I will have dry mouth or have extra saliva at times too. No one seems to know why or even really think it is serious. However, it is certainly annoying.
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