2 years into one-off acute GBS recovery, and now this?

Beethoven,

Maybe you should get some additional bloodwork and follow-up to rule out other issues. It seems like a lot of people have other autoimmune conditions in conjunction. I had “mild” GBS in November, and my hair was falling out something terrible, but it has slowed down now about 5 months post. I have asked people and they said it does continue. If I were you, I would follow-up with the doctor and have some additional tests to rule out other autoimmune diseases. Just a suggestion. I have been told “mild” GBS, after the H1N1, but the truth is, they really don’t know what I had/have.

Hi Beethoven: haven’t heard from you for a while so it is nice to see your post, though sorry things are still not better. The pins and needles and numbness are fairly typical residuals that can lost a long time. Muscles continuing to waste, however, is not something I have heard of as a residual. I agree it might be wise to look at other possibilities besides GBS if you have not already. It is possible that something else is going on. I would recommend a complete physical and all the tests your doctor might think of. As for the two year rule, many doctors do endorse that and I have heard the medical explanation which makes a lot of sense, however, it is also true that many people get better after two years. So while as a general rule it has some validity, it is certainly not an inflexible law. I know people who have been in wheelchairs for five years only to get better and be able to walk again. Jeff

Just some thoughts for what they are worth. I would definately ask for the thyroid to be checked, diabetes, both of those can cause the hair loss, nail issue. As well mal absorption could be the cause. Have all of your vitamins and minerals checked. Vit D seems to be low for everyone these days, or maybe we just test more? That could cause weakness, hence making you unable to move arouind as much therefore causing atrophy or wasting. Maganese, not magnesium, well that is important too. Chromium and zinc. If your vitamis and minerals are off, then you have to find the cause of the malabsorption which could be leaky gut. It is a thinning in the mucosal linig of the intestines that allows everything to escape into the blood, causing malabsorption among a host of other issues. Just some quick thoughts. Check iron for anemia too. Any intestinal issues?

Hi again, Beethoven,
Since we both share the same anniversary of GBS, I’ll just mention that in my opinion I think that our bodies work a lot harder now to move us, and therefore we lose muscle mass because of the extra strain. If you’ve had a good physical check-up to rule out all other possibilities, then don’t worry about it.
It’s just the inevitable change that’s happened to the body due to GBS.
Sorry to hear that your left hand has not recovered more, and continues to impact your piano-playing. Why not try to rewrite the LH parts? Try for some octaves or fifths accompaniment, or broken arpeggios.

As for letting others define your healing-time, don’t do it. You know very well how complicated the nervous system of a musician is, and the brain is working really hard to reconnect those damaged fibers, or make new connections. It’s going to take more time than for others who don’t have this network. Don’t lose faith and hope for improvement; why, just the other day, I noticed I could stand on a cold tile-floor barefooted for a few minutes, and my feet weren’t reacting by tingling and cramping. A few months ago, they would have. So who knows how and when you will continue to improve. The main thing is to keep your spirits up, and keep on making the most of your life. (Don’t forget who you’re named after, eh?)

Regards,
Donna

Hi, Nigel,
I am so glad you brought up this issue. The first time I had GBS in ’86, I had a condition which my doctor called Pemphigus – my skin became so thin that if my hand or leg brushed past a kitchen cabinet, the skin would rub off like wet tissue paper. It resolved itself months later. But I did not have any visible muscle wasting – thank goodness – since I lived in Florida.
Twenty years later when I got GBS again, I did not have any pemphigus yet now I have muscle wasting. I thought it was due to aging and lack of as much exercise. It is good to hear that it might be a result of the GBS rather than my sedentary state.
Like Dawn suggested, your hair loss might be due to your thyroid. But I would add that if you are getting it checked, ask for a FREE T-4 and FREE T-3 in your bloodwork. Most doctors do not request this and the results come back that the thyroid is fine, when it isn’t. The test show how much is FREE or available in the blood and not bound up. However, you can check your basal temperature upon rising and this will tell you how your thyroid is doing. I am helping someone whose bloodwork was great yet her hair was falling out It was her thyroid – her hair stopped falling out after she took some thyroid glandulars that I suggested. We determined the dosage by her morning temps.
I won’t spend more time going into how to do these tests correctly. There are other things you can do for the wasting…like not eating a carbohydrate when you eat a protein, etc

Nigel,
When they do bloodwork for checking the thyroid, they measure the thyroxine levels(T-4) which makes up 90% of thyroid gland secretion. T-3 (triiodothyronine) is a derivative of T-4 and is the most active form. Often the blood tests can appear normal while the body may have trouble making the T4 to T3 conversion. From what I have read, if you order a FREE T4 and Free T3, it is a more accurate measure because it measures the thyroid hormones that are FREE in the system and able to be used and not bound up which the regular test measures bothfree and bound.
They use the basal temperature or temp upon awakening with young children to check their thyroid. This is the method I use. This will tell you what your thyroid is doing without the bother of bloodwork. Others are doing it and it works. Then they can see which supplements are working and how to adjust the amount needed. There are a few instructions as how to take the temp under your arm….without rising….with your eyes closed….it takes ten minutes. I have switched to a digital once I compared it with my basal thermometer…..it’s a piece of cake….let me know if you want more details. There is also a simple test to see if you are lacking iodine which is essential for the thyroid hormones.
Hope this helps.

Beethoven,

Have you considered a trip to Mayo? You do have very strange symptoms, but I would think that you would be losing weight. I am obviously not an expert or a doctor, but I don’t think that you are dying. Otherwise, there would be some obvious signs or positive tests. In the beginning of my symptoms, I was not sure if I was dying either, and my mom told me that it takes a lot for a person to die. My father in law has pancreatic cancer, and basically, with any kind of cancer, my mom keeps saying that all of your organs have to shut down. Sometimes it is quick for some people, but for others, it takes a while. I lost 25 lbs in a short amount of time, and was very worried. My husband told me that “People can go 40 days without eating food.” Sometimes you just have to take a step back and try to look at it rationally, which is hard, I know. I tend to go to the worst case scenario and panic easily, which is why I have the logical people around me to rein me in. 🙂