what to do after a clean EMG
AnonymousNovember 21, 2007 at 12:50 pm
I should change my nick to The Lurker, because I haven’t been participating in any discussions but have been around almost a year. My apologies.
To spark my own participation, however, I’ve started a thread to illicit some advice. Living with GBS for 4 years now, I’ve settled into the typical rollercoaster of residual effects- good days, bad days, etc, but primarily struggle with the crushing fatigue (which has prevented me from working full-time since the GBS onset).
To make a very long story short- I finally insisted that my doctor address the fatigue, so he started out by sending me to a new neurologist in the area. The neurologist outlined a strategy that consisted of (1) doing a EMG to check out the nerves, (2) a sleep study and (3) refer me to a cardiologist (I have ~130/95 b.p. since the GBS onset). I just had the EMG last week and was told that everything looked good- no sign of residual damage or evidence of a recurrence. While I’m encouraged there’s no nerve damage any longer, I’m confused about where the fatigue is coming from. My fatigue symptoms are exactly like virtually everyone else’s on this forum, but my neurologist seems to be suggesting the fatigue must be coming from some other source.
I guess what I’d most like to know is what some of you have been told is the source of your fatigue, if not peripheral nerve damage.
November 21, 2007 at 2:18 pm
I have residual problems as well ranging from tingling and pain to fatigue. Good days and bad. I also had a nerve test with great results. Told me no lasting nerve damage and that I could hope for continued success. If our nerves are so good then why do we have residual problems and fatigue? I think that your question is great and I look forward to seeing the responses.
AnonymousNovember 21, 2007 at 3:56 pm
Fatigue is widespread.
However, I suggest a look into vitamins and deficiencies which can be found out by a simple blood test, i.e. B12 cobalamin, B6, iron, ferritin, D vitamin, potassium, calcium, magnesium.
The above-mentioned vitamins are important for people with autoimmune diseases.
Look at this thread: [COLOR=”Red”]http://www.gbs-cidp.org/forums/showthread.php?t=1696[/COLOR] Please read through for depth!
Myelin sheath, the “insulation” around nerve cells, is critical for nerve conduction. Degeneration of this protein causes serious neurological diseases. Myelin is created and maintained by methylation reactions that depend on vitamin B12.
It’s a long article covering more than neurological considerations — AND — do keep in mind the LEF sells supplements, but they do seem to support their information with references.
Here is some supporting info from PubMed:
Vitamin B12, demyelination, remyelination and repair in multiple sclerosis
[URL]http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?[/URL]db=pubmed&cmd=Retrieve&dopt=AbstractPlu s&list_uids=15896807&query_hl=1&itool=pubmed_docsu m
What is the health risk of too much vitamin B12?
The Institute of Medicine of the National Academies did not establish a UL for this vitamin because vitamin B12 has a very low potential for toxicity. The IOM states that “no adverse effects have been associated with excess vitamin B12 intake from food and supplements in healthy individuals” . In fact, the IOM recommends that adults older than 50 years get most of their vitamin B12 from vitamin supplements or fortified food because of the high incidence of impaired absorption in this age group of vitamin B12 from foods that come from animals .
Here’s a link discussing B12 food sources:
Here’s a link discussing B12 injections vs oral administration:
[COLOR=”red”]Researching I found that B12 deficiency can give metallic taste and/or other funny tasting problems, parastesia, feeling and touch problems, walking and coordination trouble, memory problems, depression, symptoms from the nerve system. First symptoms: [COLOR=”Black”]fatigue[/COLOR], heart beating, shortness of breath and dizziness, head aches and pains in the legs[/COLOR].
I have Hashimoto’s (autoimmune)/hypothyroid with antibodies of the chart, and I discovered that my vitamin B12 cobalamin was very low too, though not below the range but close. B12 should be mid-range to avoid symptoms.
Search the net for carpal tunnel (cramps in wrist) and B6 and see all the results. Here is one of them: [url]http://alternative-medicine-and-health.com/conditions/carpal.htm[/url]
[QUOTE]Fortunately vitamin B6 supplementation, the natural treatment for carpal tunnel syndrome, is simple, inexpensive, and usually very effective. Researchers have discovered that many people with carpal tunnel also suffer from a B6 vitamin deficiency (which explains why many sufferers are pregnant women, menopausal women, or women on birth control pills, because these conditions deplete B6.) [COLOR=”Red”]Vitamin B6 works to strengthen the sheath that surrounds the tendon and thus helps to relieve the pain. Two other B vitamins work in conjunction with B6, to make the treatment more effective: B2 and B12.[/COLOR] In addition, folic acid is beneficial.[/QUOTE]
It is important to check the vitamins a couple of times or regularly as there is a possibility that the vitamins are not absorbed in the stomach either by foods or vitamins.
Sorry for the long post. I hope you will enjoy reading 🙂
AnonymousNovember 21, 2007 at 4:48 pm
Welcome Lurker, I mean Roberto! That’s funny because I was a lurker too, and didn’t know they had a word for it:) I think one of the things discussed with fatigue is even so you have remyelinated, and “healed”, in my humble opinion I don’t things are as good as new if that makes sense. It’s like a wound healing on your skin, you make a scab and it heals and you have a scar and you can function, etc. but it is not quite like new. I believe these nerves that have been damaged heal, but exhaust quicker than before we were sick. It’s kind of like a game now to plan my activities around my exhaustion. Again, it’s just my theory gathered from reading, etc. Welcome! Gabrielle
AnonymousNovember 21, 2007 at 10:17 pm
gab has it right. when our nerves heal, they are not like undamaged nerves. they work, but heal in a way that uses much more energy to accomplish a given task. i don’t want to 2nd guess your doc, but i bet all the tests come out ok. get an Rx for provigil, that seems the best to help gbsers w fatigue. it may help, but pls do not expect miracles. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousNovember 21, 2007 at 11:32 pm
I am one year past my second GBS experience. I had gained weight during that year so I decided to get back my slimness. I am doing a combination Atkins diet while incorporating the food that are beneficial for my blood type – O. I have so much energy now that I am eating mainly protein and some veggies. Although I LOVE carbohydrates, I see how much better I feel not eating them. I have more energy and less food cravings. I no longer need the afternoon naps. I think sugars and starches are the main cause of many of our illnesses. I supplement with a B complex three times a day. I think this prevented nerve damage from occurring.
I am amazed how most people do not even think that it might be what they are putting in their body. I had high blood pressure from the GBS and needed a beta blocker to bring it down. My heart was beating unbelievably fast. I have gotten off ot the medication and am now doing just supplements like Magnesium and Potassium and garlic.
I am currently reading some of the newest books on health and they say that eating protein forces the body to burn off the fat and builds up your muscles. They say that a high carb diet ages us. I can see a difference in my skin from just being on the high protein regime for a month. But you have to be careful which proteins you eat.
Good luck in whatever path you take. Glad to see you surface on our site.
AnonymousNovember 25, 2007 at 8:38 am
Not exactly related, but it may provide some answer.
I had two herniated discs in my neck, but after being repaired, the pain didn’t subside.
The neurosurgeon (he’s out of GR) explained the nerves will often grow back remembering the pain, thinking it serves a function, when in fact, it doesn’t.
I had a very mild case of GBS in ’95, never was the same since.
I’m getting a EMG in the next month, and am as afraid they will find something, as they won’t…because then what? They’re sending me to Muskegon, since I can get in that much quicker…hoping the guy is decent!
AnonymousNovember 25, 2007 at 11:06 am
I hear you about waiting for test results with the “afraid they will/afraid they won’t” find something. Seems like the older I get, the more unexpected weird stuff shows up!
Roberto aka Lurker —
Welcome! Seems like a lot of us get the “cured” word from our docs and we know that we are not the same as before. There is just no clinical way to measure fatigue and sluggishness — therefore, it must not really be there. 🙂 That is why this forum is so great — we know that others know how we are feeling! If your doc wants to run some tests/blood panels, maybe there will be a little clue if something else is going on. If not, it would provide some peace of mind.
AnonymousNovember 25, 2007 at 11:42 am
And I can relate to the weird stuff.
I’ve had numbness in my hands for years, but once my neck went, that’s what they want to relate everything to. I still think my spine problems came from the GBS, I couldn’t even change my infant daughters diapers for months…once I had feelin back in my hands/legs, I was left with pain. I could eat vicodin like candy and barely get any relief, switching to Elavil helped then, but not anymore.
And the cure is often worse than the disease, some medications have sent me into the ER with dianosis of Chron’s Disease, and it was just the meds that caused it.
One thing that took me forever to realize is SSRI antidepressants can cause nerve/muscle pain to be worse, it is a side effect rarely noted. Just a heads up to anyone who takes them…who among us isn’t depressed at least here and there from living this way.
AnonymousNovember 30, 2007 at 11:23 pm
Thanks for the replies. One of my frustrations is in my own state of mind. On the one hand, I’m a wreck more often than not, I couldn’t imagine working an 8 hour day, and I feel like I should seriously look into trying to get disability to help support my family (which would also allow me to continue to do the 1-2 hours/day of volunteering I do as a tutor at my son’s school). On the other hand, (until recently) I’ve always assumed I would eventually get better and could resume the rather hectic schedule I kept prior to getting the GBS.
I’m sure I’m not alone in being so frustrated with simply not knowing what to expect from myself. Do I continue to look for full-time teaching jobs, despite doubting my ability to have my mind sharp all day (or, worse, being a zombie whenever I’m at home)? Do I continue with my application to a doctorate program at a local university not knowing if I’d be able to sustain that kind of output? Or do I give up on those things in hopes of being “realistic” about my current abilities and apply for disability (which I’m not at all sure I’d actually be eligible for, especially considering the results of the EMG) and volunteer in my community for as much as I’m capable?
[sigh] Can you tell I’m frustrated?
AnonymousDecember 2, 2007 at 1:17 pm
[QUOTE]I should change my nick to The Lurker, because I haven’t been participating in any discussions but have been around almost a year. My apologies. [/QUOTE]
LOL…gland I am not the only one in that I have lurked around here for years with the occasional foray of posts, then back to just reading mode. hehehe…you are not alone! (wonder if you wear a trench coat while lurking)
Here is an excellent article concerning chronic fatigue- share with the family!
Related to this article, I’d guess I have the CFS related to “Sudden onset cases” with Neurological/cognitive manifestations similar to that described by MS patients- the nerve damage to my parasympathetic system seems to be a key issue- GBS hit my immunological system after a flu in ’97, suggesting infectious etiology might be involved, as if it matters. It is a trend that researchers are now just reporting, and expect additional studies in years to come, which support the premise discussed above; otherwise it would not be a commonly reported aspect in these forums and elsewhere. Also, even if you score low on the tests it matters little because it is how you feel and how CFS affects your lifestyle; consequently, it is not just you or that you are imagining things or are just plain lazy… it is the post-GBS residual that keeps on giving!
/be sure to back out the [url] in front and behind the address: I wish the BBS admin would enable hyperlinks!
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