2 years into one-off acute GBS recovery, and now this?
AnonymousApril 13, 2010 at 8:29 am
2 years into one-off acute GBS recovery, and now this?
I was diagnosed with GBs in late November 2007; so I’m just a tad over 2 years into my recovery.
I had a mild/moderate attack of GBS, which was brought on as I was stressed out and depressed at the time and I’d just got a ‘cold’ and GBS came on as I was receiving from my cold.
I was in hospital for a week, then I came out. For the first few weeks I didn’t even have the strength to life my hands above chest height due to weakness in arms, I could walk slowly at the time. 3 weeks later they gave me imunuglobulin intravenous as a matter of caution. I was in hospital for 5 days for this treatment.
After 2 months I was walking around and doing things almost normally and after 4 months I was playing squash and badminton again.
My left hand is still boney looking and doesn’t work 100%, it is working about 80%, which means my piano playing has kind of come to an end as the manipulating of fingers on left hand is a little harder now.
I did lose muscle tone at the beginning, and I generally have less muscle tone now than I did before.
Doctors and neurologist have told me I had the one-off acute version of GBS, not the chronic one. This was confirmed after several nerve conduction study tests over a 18 month period.
However, a year into my recovery I noticed my hair was starting to fall out and is thinning quickly, also my fingernails started to become like paper and they snag and tear easily so I have to constantly file them back. This started a year after GBS.
Over the past 8 months I’ve noticed muscle waste continuing on my hands, ankles, knees and forearms and wrists. I measure them on a monthly bases to check and over the past 8 months things are getting thinner on my body.
I’ve also noticed pins and needles in my right calf muscle and sometimes in my fingers, fingers sometimes can feel a little numb too.
I understand that while you are recovering your body does not prioritise fingernails and hair follicles as it concentrates blood to the vital body areas and repairing damage. I’ve heard that once your body fully recovers, fingernails and hair grow properly after this.
Why, over 2 years into my recovery am I still losing muscle tone and my hands and forearms still becoming bonier?
Is this just residual leftovers of GBS that I’m going to have to live with?
Will it potentially take another year or so until I’m fully better; I was told 2 years is the maximum for GBS recovery and that after that, any problems I have I’ll have to learn to live with for the rest of my life?
I feel like I have some sort of muscle wasting decease, but I’ve been assured time and time again that I only had the one-off acute version of GBS; my nerve conduction study tests show this and over the last year they have shown me to not be getting worse. A trifle better if anything.
I’d really appreciate any advice as I’m quite anxious.
AnonymousApril 13, 2010 at 10:58 am
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.
AnonymousApril 13, 2010 at 11:29 am
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
April 13, 2010 at 11:38 am
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?
AnonymousApril 13, 2010 at 5:40 pm
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?)
AnonymousApril 13, 2010 at 10:43 pm
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
AnonymousApril 14, 2010 at 2:47 pm
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.
AnonymousMay 10, 2010 at 3:59 pm
OK, now I’m getting really scared.
Just to follow up from the posts to my original post.
In my original post I was/am concerned about my ‘continued muscle wasting’. I’m nearly two and a half years into my recovery of acute GBS. During the first 18 months I had loads of nerve conduction study tests and they all showed me to be improving.
However, during the past 6 months my muscle wasting has suddenly started to get worse.
When I first got my attack of GBS in late November 2007 I lost a load of weight and muscle during the first 3 months, which was to be expected. Then over the next 3 months I put on the weight again and started to work out with weights an built up muscle tone again. So 6 months into recovery, I looked good again, but still had difficulty using my left hand.
Then over a year in, I suddenly started losing hair and my fingernails went bad.
But the worse is, 2 years into my recovery, I suddenly start to lose muscle, I can see it wasting away in my forearms, wrist, fingers, ankles, knees. I measure my various body parts every 4 weeks and the circumference of my wrist for of my left arm for example has gone from 18.5cm to 18cm to 17.5cm to 17cm each month over the past 4 months. My right wrist is doing the same thing. My forearms are also losing half a centimetre per month too.
Both arms from the elbows down are starting to look like a skeleton with skin on.
Why is this happening to me, why am I wasting away like this? what I can physically do is not getting worse, just the way I look and my muscles wasting?
Now, in answer to some of the kind posters remarks.
I’ve had all additional bloodwork done; everything, I mean everything.
I’ve been checked for all other neurological and muscle and nerve disorders and I’m all ok – checked out just fine.
I’m not suffering from mal-absorpsion and I’m taking in protein just fine; Doctors checked all this.
No HIV or diabetes.
Morning basil temp is fine and so is everything else.
My thyroid gland is fine, all types of testing were done for this, all FREE T3/T4 etc.
All my vitamin levels are spot on.
I’m eating a perfect diet.
Chromium and zinc are fine.
Iron and anaemia are all fine, so too are my intestines.
So, Medically speaking, I have a clean bill of health. I was with my Doctor the other day for an hour as she went through every test I’ve had in the past 6 months and I’m a-ok.
I can’t understand it, I told the Doctor that it feels like I have some sort of muscle-wasting decease, but she insists every test has been done and I’m ok.
I have an appointment with another neurologist in 2 weeks, a man I’ve never seen before. He is my last hope, but I don’t know what to say to him.
It feels like if I carry on like this I’ll be dead within a year, 2 at the most. I’m wasting away and everybody keeps telling me I’m ok.
I’m not losing weight though, which is strange. I’m 6′ 1″ tall and weigh 188 lb. I’ve been this weight for 10 months now. But my circumference of my forearms and wrists are losing half a centimetre per month and my rings don’t fit my fingers anymore, they fall off. This does not compute.
Am I dying?
I’m really scared.
AnonymousMay 10, 2010 at 4:23 pm
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. 🙂
AnonymousMay 10, 2010 at 6:51 pm
I’m starting to think it might not even be GBS related anymore. It could be something else like ALS or some motor neurone disease that wastes the muscle away then leads to paralysis and then I don’t think it is so good from there. It probably isn’t ALS, but it is odd that I’m still losing muscle in my left hand after 2.5 years. Could be residual GBS though.
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