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is this muscle weakness really CFS or is it something else?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by karlish, May 26, 2012.

  1. nanonug

    nanonug Senior Member

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    Did you do a glucose tolerance test? If not, what are your fasting glucose and Hemoglobin A1c levels? In any case, the glucose tolerance test is the better test.
  2. rlc

    rlc Senior Member

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    Hi Karlis, although you have had a lot of testing, and your doctors have ruled out most of the obvious diseases, there are a few options that they may have missed. On this page http://www.rightdiagnosis.com/symptoms/muscle_atrophy/questions.htm there is a check list of questions to ask if a patient has muscle atrophy and an explanation of what diseases should be ruled out, you can when you have the time and energy fill it out and print it to take to your doctor.

    Almost all the diseases that they say can cause it, I’ve looked up, and will have been ruled out by you having had MRI’s, EMGs, ECGs and Spinal Taps done, however there are a few left which are quiet likely to have been overlooked and you may have not been tested for, some of them fit the symptoms you are describing very well, so if you haven’t been tested for these illnesses then I would recommend getting your doctor to test for them.

    The first is Addison’s diseases (Adrenal Insufficiency), it can cause muscle atrophy and a lot of other symptoms which match with what you are describing see http://en.wikipedia.org/wiki/Addison%27s_disease#Symptoms it can also cause POTS, A Lot of doctors mistakenly believe that patients have to fail the morning cortisol test to have Addison’s this is not always true and some patients do not fail this tests, how it should be diagnosed is explained in this article http://suite101.com/article/adrenalinsufficiency-a1543 it says that morning serum cortisol and serum ACTH and Aldosterone must be done and that if any doubt remains that a ACTH stimulation tests has to be done!!

    Another possibility is Hyperthyroidism, as well as muscle atrophy it can cause all the symptoms listed here http://www.endocrineweb.com/conditions/hyperthyroidism/hyperthyroidism-symptoms it can cause POTS like symptoms, how it is diagnosed is explained here http://www.endocrineweb.com/conditions/hyperthyroidism/diagnosing-hyperthyroidism-overactivity-thyroid-gland hyperthyroidism is also linked to a condition called Thyrotoxic myopathy see http://www.medicalonly.com/2007/07/27/thyrotoxicmyopathy_hyperthyroidism

    You say that B12 deficiency hasn’t been tested, it should have been it can cause muscle atrophy some of the many symptoms it can cause are listed here http://www.webmd.com/diet/vitamin-b12-deficiency-symptoms-causes it can cause POTS like symptoms, a B12 deficiency can also be caused by Graves diseases one of the types of Hyperthyroidism. B12 might not be causing all your symptoms, but if you are low it may be contributing to them. A lot of doctors believe that patients with B12 should have macrosytosis (changes in blood cells) and won’t look for it unless they see this, it is not true macroytosis is a late sign of B12 deficiency and symptoms can start long before this happens and it won’t happen at all if you have iron deficiency. The reference range for B12 has been proven to be to low so your results can say normal but you can still have it, levels should be in the middle upper range of the reference range to rule out any chance of symptoms from it.

    Vitamin D should be tested it does not cause muscle atrophy, but does cause severe muscle and bone pain and fatigue amongst other symptoms and is often misdiagnosed as FM, because it is so common peope often have this as well as other conditions, which can make it very hard to diagnose the other condition until the vitamin D deficiency is treated.

    Celiac disease should also be tested for, it can cause deficiencies in numerous vitamins and minerals including B12 and vitamin D, which will give the patient a vast array of different symptoms, which doctors will never be able to work out unless they think to test for Celiac. It can cause POTS, How to test for Celiac is described here http://celiacdisease.about.com/od/diagnosingceliacdisease/a/celiacdiagnosis.htm

    All of the above diseases do get misdiagnosed as ME so it is important to get them all ruled out if they haven’t been, it is also possible that you have more than one of the above conditions.

    Regarding POTS, to get a proper diagnosis you need a tilt test table to confirm that what you are experiencing is POTS, many other conditions will give very similar symptoms and it is not something that can be diagnosed without the test, it is normally done by Cardiologists. However POTS is caused by a large number of different illnesses see http://www.dinet.org/what_causes_pots.htm so testing for it is not likely to help much in getting a correct diagnosis, which is what you need, my opinion is that getting the diseases above tested for first would be more help to you in getting a correct diagnosis.

    Hope this helps

    All the best
  3. karlish

    karlish

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    Brenda I know all about those things, I just do NOT have lyme but I strongly believe this lyme diagnosis is a great cash cow for LLMDS and unfortunately a disaster for people like me for whom it takes forever to get a proper diagnosis... I got worse and worse after almost one year of antibiotics, it just killed me, after a herx you are supposed to get better, I did not! My doc kept telling me I would finally get better, but I suspect this was only to sell me some more of their vitamins and stuff... I got everything, antibiotics, vitamins, chelation, all the stuff that supposed LLMDs promiss you...
    I was also tested for bartonella, babesia all those funny names that I am really not sure they even exist as all the symptoms "overlap", but I am sure you know all about this vocabulary...Anyway, after one year of treatments and after I got broke without any result, I decided to get tested twice for lyme but NOT through IGENEX as I am sure almost everyone tests positive through IGENEX... and I was negative! I wish I had at least kept my money...
    As for the black spots, like I said I got tested for diabetes several times, last time was few weeks ago and I don;'t have it, so I don't what causes them...
  4. karlish

    karlish

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    rlc thank you very much for the links! My adrenals have been examined and they are fine, as well as my TSH T3 and T4 so we know from thyroid either...
    Yes my vitamin is very low and I take strong supplements to help it (10000 iu/day)... but usually to have a low vitamin d there is some other condition going on with it and that's we can't seem to find...As for celiac I am already under a gluten free diet, only to see if that helps but it doesn't, but i figured it wouldn't hurt as this seems to be a must for any chronic disease...
    Thanks a lot everyone!
  5. rlc

    rlc Senior Member

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    Hi Karlish, glad they have ruled out those other diseases, but get B12 checked to see if that is contributing to your symptoms, it does look like you probably have something else as well as very low vitamin D, but low Vitamin D can cause a lot of the symptoms you are discribing like muscle and bone pain, weakness and fatigue, so it will make it very hard for anyone to work out what is going on until the low vitamin D levels are fixed, and your just left with the symptoms of the other condition.


    One thing that you might be able to do if you are tolarating vitamin D well, is talk to your doctor about giving you very large doses of it and fixing the problem very quickly, they can prescribe 50,000 iu pills, and I have read that they can do injections of 600,000 iu, you could then fix the low vitamin D in a matter of weeks. To give you some idea of the amounts that can be need, it is estimated that 600,000ius will raise vitamin d levels by by 20 ng/mL (50 nmol/L) so some people can need amounts over a million ius depending on how low they are, so at 10,000 a day you could be looking at about a hundred days to fix the problem, I doubt you want to wait that long, but talk to a doctor these kinds of doses should only be done with medical supervision there is a good article on Vitamin D here if you are interested http://www.thorne.com/altmedrev/.fulltext/13/1/6.pdf


    Once the low vitamin D is fixed it could make it a lot easier for doctors to work out what the other condition is.

    All the best
  6. Tammy

    Tammy Senior Member

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    Karlish..........the first few years i had this.......not many people were talking about the kind of muscle weakness and atrophy that you are talking about. I thought I was the only one who was experiencing these things with CFS. Then over the years......more support groups developed and i learned that many other people with CFS were also experiencing some pretty difficult neurological symptoms.......so to answer your question........YES.......I have had these symptoms you are talking about......mostly when my illness was at its worst. Today, I do not have the muscle atrophy........the muscle weakness waxes and wanes. Tammy
  7. Shell

    Shell Senior Member

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    Karlish, I can't add anything useful to what others have posted - but just to say, you are not alone.

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