Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

ALS diagnosed !!

Discussion in 'General ME/CFS News' started by Omar88, Jul 4, 2017.

  1. Omar88

    Omar88 Senior Member

    after been in the ER more than 10 time in one month with muscle spasm , tongue twitching , heart palpitations , high blood pressure and more wired symptoms a new diagnose is added to mine ? ALS !!

    Something is destroying my body from inside and started with my nerve system year ago and here i am !!

    doctor want to go through some other tests before he say officially am an ALS patient and i would die soon :)

    i wanna fight but my body is going week :( and my heart is going crazy , i cant talk or breath without heart palpitations ..

    did any one had ALS like symptoms here after years of being sick with CFS ?

    help me with information u can please and pray for me

    pamojja, MastBCrazy, cfs6691 and 12 others like this.
  2. Nickster

    Nickster Senior Member

    Los Angeles, CA
    My son with cfs/me has heart palpitations and nerve pain. His symptoms seem to change on a daily basis from his heart, to his nerves to his gums to his head. But, he has not been diagnosed with anything yet.

    One thing I know for sure after experiencing over 20 doctors and over 300 tests is the medical community knows so little about our health conditions and this for you maybe a incorrect diagnosis. This disease mimics so many awful diseases. For me I do not believe the docs have all the answers or knowledge.

    Take care and I will pray for you!
    MastBCrazy, Orla, Cheesus and 21 others like this.
  3. Kati

    Kati Patient in training

    Hi @Omar88 I am so very sorry you have a probable diagnosis of ALS. :( I am sending hugs and my very best wishes, with the hope that you have the best medical team to support you through this.
    MastBCrazy, BurnA, cfs6691 and 23 others like this.
  4. Hutan

    Hutan Senior Member

    New Zealand
    I was writing something very similar to @Nickster although not as good. e.g. one of the things I have learned is that doctors can be wrong. And if the doctor is saying they want to do more tests, then they themselves are not yet certain.

    I'm so sorry that you are having these bad symptoms and have a possible ALS diagnosis to deal with as well. I will be thinking of you.
    MastBCrazy, merylg, Sancar and 14 others like this.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    I'm very sorry that you are going through such a terrible time. I hope that the doctor was wrong. My stepmother had ALS, and seemed quite cheerful although it shortened her life, but then Stephen Hawking also has it and despite being very disabled seems to have a normal lifespan.

    But you may not have it. I guess that you would rather be sure either way.

    I hope you get the best results possible.
    Skycloud, taniaaust1, merylg and 13 others like this.
  6. Gingergrrl

    Gingergrrl Senior Member

    Please do the rest of the testing as it is possible that the doctor is wrong. Are you seeing a neuromuscular specialist who has experience in diagnosing ALS?

    I am not sure if I had ALS symptoms (b/c so many diseases mimic each other IMO) but I had muscle weakness, breathing weakness, tachycardia/POTS, etc. I know this is a long shot, but have you been tested for autoantibodies for things like Myasthenia Gravis, LEMS, Stiff Person Syndrome, and even random autoantibodies that do not "fit" with one diagnosis?

    Can you remind us what country you are in? It will help us to give you better information re: doctors and testing. And am already praying for you that you will get the best diagnostics and treatment possible no matter what is ultimately found :hug::hug::hug:
  7. boolybooly

    boolybooly Senior Member

    I am very sorry to hear you are facing these difficulties @Omar88 .

    I do not have medical training and I dont have this condition myself but I know with my symptoms which are underpinned by a fairly typical immunological CFIDS, do include alarming issues with muscles and nerves and heart which can often be helped by good mineral supplementation. So that is the only helpful suggestion I can think of right now.

    I have found too little magnesium or potassium can upset my heart and too little calcium can lead to muscle cramping and it can fluctuate quite rapidly between the two. I dont know if this is what you have, as yours sounds worse but on the other hand mine would be worse too if I wasn't taking extra of these minerals.

    The problem is some minerals come in pairs, which means they are mutually exclusive and if you have too much of one it pushes out the other, because they have similar chemistry. The pairs I am thinking of are Calcium / Magnesium and Potassium / Sodium and we need these paired minerals in the ratio 2:1 respectively for each pair.

    So I consider that their helpful effects reflect medical knowledge about their role in our bodies and its true for everyone that we need these minerals in these ratios. ME people are well known for often not having enough magnesium as we seem to go through it for some reason.

    So if you needed more magnesium to settle your heart rhythm it would not be a surprise but you should also take more calcium with it and try to find a balance which suits your needs. Likewise potassium which is easily obtained in the right ratio with sodium from LoSalt.

    Whatever else may be wrong with you, its still true you will do the best you can by having a good supply of these minerals in your diet as a foundation for whatever treatment or convalescence you need.

    So I hope this is a helpful suggestion, to supplement these minerals and also other minerals including trace minerals. This is all I can think of to say which might help, so I hope it does.

    Best wishes.
    Skycloud, merylg, Sancar and 5 others like this.
  8. Crux

    Crux Senior Member

    I just hope the diagnosis is something else....

    But, if it is ALS, there is a lot of research into the use of Copper Compounds for treatment. For now, it's with animal models.

    My symptoms have been more like MS, but , taking copper glycinate has really helped. ( B12 helped in the past, but the copper glycinate covered more symptoms.)
    merylg, Sancar, Mary and 3 others like this.
  9. Daisymay

    Daisymay Senior Member

    I too am really sorry to hear you are going through this, but please do get further testing, he may be wrong, praying for you Omar88, gentle hugs x
    Skycloud, merylg, Sancar and 4 others like this.
  10. Omar88

    Omar88 Senior Member

    thank you all guys ,,,

    nothing a lot to say,, i thought the first year was the strongest but now i can be sure that what is hidden was more worse ..

    my appointment with KDM in Belgium in the end of august if i can make it to that time ..

    am visiting the hospital nearly daily either to ER or to different clinics because every doctor refer you to the other one after some tests and MERS virus is every where here so double mask am using ..

    the doctor said its either 2 things ALS or an infection in your nervous system and he think of TB but they always thought of since the beginning of my illness and it was always negative while my ppd test now is highly positive ..

    since a year my body started acting crazy , autoimmunity having a high positive ANA , neurological problems in every nerve in the body and infections symptoms with recurrent bronchitis , sinusitis , abscess and others and now nothing seem to be clear

    THANKS AGAIN :heart:
    actup, BurnA, Skycloud and 13 others like this.
  11. Mij

    Mij Senior Member

  12. hinterland


    I am so sorry to hear this, Omar88.

    Jason Becker is a hero of mine, he has ALS. He was a guitar prodigy about to tour with David Lee Roth when he developed symptoms. Here is a documentary about him - as a person with ME, I find it inspirational, but aspects of this movie might be challenging viewing for those affected by ALS.

    I wish you well.
  13. TenuousGrip

    TenuousGrip Senior Member


    When I read the title of your post, I had a strong, immediate emotional reaction. I can't even begin to imagine how you're feeling.

    Please push as hard as you can for the correct diagnosis. Here's a link to the Mayo Clinic's ALS diagnosis page.

    You'll be in my thoughts.
    Skycloud, merylg, TrixieStix and 2 others like this.
  14. Gingergrrl

    Gingergrrl Senior Member

    I find it upsetting that the doctor would tell you that it's ALS or an infection and it sounds like he is just guessing at this point. He should be able to distinguish TB from ALS with a chest x-ray, the PPD skin test, and even the Quantiferon Gold blood test. Are you having symptoms of TB or have you been exposed to it that you know of?

    Do you know how high your ANA titer is? I feel like there still are a lot of possibilities to investigate before the doctor tells you that you have ALS.
  15. Alvin2

    Alvin2 The good news is patients don't die the bad news..

    So sorry to hear this, hope you get the best treatment possible :hug:
    Skycloud, merylg, Sancar and 2 others like this.
  16. Dechi

    Dechi Senior Member

    @Omar88 I am so very sorry about this possible ALS diagnosis. Since doctors are so often wrong, I can only wish that they are this time again. I will be thinking of you and hoping for the best positive outcome possible.

    Hugs xxx
    Skycloud, merylg, Sancar and 2 others like this.
  17. btdt

    btdt Senior Member

    I am sorry this is happening Omar. I am curious if you have changed drugs in the past year prior to these changes. I had something like this happen about 10 years ago when I was taking antidepressant drugs statins and likely other that escape me just now. I had similar symptoms then
    " muscle spasm , tongue twitching , heart palpitations , high blood pressure and more wired symptoms" all those as well as head drops and foot dragging pots.
    Other drugs were intially given to treat the symptoms those fell off rather quickly as most made me worse. A neurologist had me switch out effexor for cymblata I could not tolerate it and had a long battle with cold turkey withdrawal while fielding side effects from mirapex and a few others short term attempts to calm my system. It seemed for me that I had reached a point where drugs did not help me. So cold turkey it was and I do not recommend it.

    Oddly enough I am going thru something like this again in the past few years bad reactions to normal grooming chemicals and cleaning products which eventually lead to a diagnosis of multiple chemical sensitivity. I have learned to avoid chemicals and perfumes as much as possible which includes wearing a mask the sort a spray painter would use.

    A year ago a movement disorder started I could not control my body I had jerking much more profound than the time 10 years ago. It became severe and constant to the point it was suggested I get a scooter and or wheel chair walker... being of mean temperament I did not give into this idea and chose to lay in bed when I was too jerky to get up. I tried to learn during this time how to help myself detoxing was supposedly a good idea.. I read books on mcs ... such as the are... not thathelpfulreally.

    What I gathered was to take vitamin C (later testing at the enviromental clinic confirmed I needed more) glutathione vit E magnesium selenium there is a long list of things I take some of which may not be helping some I know are... C is a must and glutathione selenium...

    I load with these when I can't walk and it helps...

    I am curious about the minerals listed above as I don't know about them more to learn there is always more...

    I have breathing issues which seem to hit out of the blue but could be a chemical reaction as not all chemicals are noticeable to our senses. I take NAC which is suppose to help with breathing... I also see an osteopath who I know helps with my breathing. 10 years ago when I had the same breathing issues the osteopath said my diaphragm was not working properly like it was in spasm or contracted she worked on it and it helped.

    I am offering a couple of options as way things that may trigger this sort of reaction that is so long standing... drugs.. on and off and chemical reactions.

    Could I have something else that is remitting it is possible it is something bigger and worse than fibro cfs or mcs...something they have not found yet... could be that the latter lead to worse things over decades of doing nothing to ease it. I truly don't know and I think anyone who says they do know is either and scientist withholding science or a liar who doesn't know... how to tell the difference is the key maybe.

    If there is something showing up in your tests that truly is ALS that is one thing but this guessing crap has been a thorn in my side in the past... it is not helpful but I know it happens. When I first showed up jerking in my doctors office she said it looked like Huntingtons. In the mean time I was looking for things that seemed to make it worse being tired for sure...worry makes everything worse.
    Showers made me sick for a long time at first we checked my heart then temperature fluctuations were suspected on and on... it was the soap... soap if full of chemicals same for toothpaste deoderant... on and on.. your sheets are washed in soap... detergents are full of things that can cause reactions to sensitive people... if you wanted to test any of this stop using them... wash your clothes and bedding in just washing soda ... surely skip deodorant shampoo baking soda can be use on you hair too till you find something that does not react... IF this is what is causing your problem.

    One last word about the hosp... what do they do for you? Anything helpful?
    I once went to the hosp 3 night in a I am just curious what they actually do for you.

    There is a chance this is not ALS until they know for sure it could be anything. There could be things that help in the mean time. I am on a waiting list for a movement disorder clinic it is a two year wait for a real dx in the mean time I am running an ongoing experiment on my human body to find some things that help. I hope your waiting list is not that long but if it is there are things to try and help yourself. From what I have read about mcs it is a natural progression from cfs fibro to mcs... according to some doctors if they are right surely not everyone gets it.. I hope not anyway. I was first dx with cfs/fibro in 1994 had it years before dx...just so you have a timeline.

    I wish you well please don't loose heart many times I have been told things that were just plain wrong...repeatedly actually. I have been devastated by some term used only to find it was incorrect... please do whatever tool you use to relax tho I bet your resistant to the idea right now ... because of the stress it is actually now that you and your body need it most.

    wishing you peace and health...
    Binkie4, Skycloud, merylg and 5 others like this.
  18. Nickster

    Nickster Senior Member

    Los Angeles, CA
    @btdt Well said! You are so right on with this roller coaster of this disease. It is like riding a roller coaster blind and most know nothing about it including the supposed medical experts. You are a true warrior in this crazy disease and I so appreciate your honest story! I believe there is something that has yet to be uncovered and hope Dr Ron Davis and others find this solution.
    Hang in there to all!
    merylg, Sancar, rosie26 and 2 others like this.
  19. Arod715


    This was one of my worst fears, going through all of my undiagnosed issues. I hope it is not Als, but if it is I would see if your doc would be willing to put you on some hgh and possible steroids to help slow the process. Best Regards
    merylg likes this.
  20. Undisclosed


    ALS does not affect the heart as far as I know because it's a disease that affects the voluntary muscles. Have you been referred to a cardiologist for the heart palpitations?

    I have muscle spasms a lot. Eye twitches. Not ALS.

    Is your tongue twitching accompanied by difficulty swallowing?

    I wouldn't think the worst until you have some further tests. Your symptoms could be caused by other things. Some of your symptoms look like a magnesium deficiency. Who knows but you need to have other causes ruled out before a diagnosis of ALS can even be considered.
    Skycloud, merylg, Sancar and 6 others like this.

See more popular forum discussions.

Share This Page