What happened to you the years before your ALS diagnoses?

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Four years ago I started having Muscles spasms in both calves that just would not go away. I would drink lots of water and take magnesium and patassium over the counter supplements, but nothing would work. They happened all the time, and at times, the spasms would happen in my feet and hands. Then they would start happening in my ribs and chest. At the time, I thought I was having gallbladder problems and even had it removed. Afterwards, the chest pains continued. Now I wonder, Did I just lose my gallbladder for no reason. Now, I know that the chest pains were muscle spasms. But during this time, I started feeling very weak and clumsy in my left leg and left hands. I noticed that I can't lift the weights that I normally could before. I also started having trouble eating. Swallowing foods like biscuits or bread just wouldn't do down. I would start choking. I noticed that I had to chew smaller bits and be careful of what I eat. This alone, I knew was not normal. Well, I ended up at a neurologist who told me that I had peripheral neuropathy. Little did I know that this was just a beginning to years of doctor visits with no other diagnoses. The neuropathy explained a lot of my symptoms but not all. After the first year, the muscle spasms were everywhere but they seemed to be a little less painful. But muscle twitching started in both calves, then weeks later, I noticed twitching in my feet. Than all over my symptoms gradually started getting worst, the twitching moved up to above my knees and into both thigh muscles. At this time, I started feeling twitching in my left tricep and bicep muscles. 3 years later and 3 Neurologist later I was in the same condition with no firm diagnoses. I am at my forth year now and 3 months ago finally I got my diagnoses. I have ALS. But I'm good and knew for quite a while that I did thanks to Dr. Google. But my question is, why do Neurologist know all along what is wrong with you but they refuse to tell you. Are they scared of being wrong? Anyway, it is what it is.

1 like, 7 replies

7 Replies

  • Posted

    Unfortunately it's like banging your head off a brick, they even make you feel like your making it up, Ye because people suffering all kinds of illness just love to make this crap up because we have nothing better to do with our lives, I'm so sorry you had to deal with this but I hope you have your symptoms under control now😊

    • Posted

      Hi Carolineq8, I thought I was the only one that went through hell getting a diagnoses. LOL. Part of me wants to go back to the first neurologist and say "you see, I told you so stupid" but it's not about that. I couldn't believe that I actually felt relieved when I was told that I had this. And that alone is messed up in so many ways. Hopefully you didn't have to deal with this stuff. I feel that doctors should be more honest with their patients and tell them up front what the possible diseases that they could be facing and that they will try to narrow them down. I don't know why they don't.

    • Posted

      Your so right, I spend my life googling trying to find out whats wrong, Iv learnt so much but these docs no all this s..t so why can't they give us a guidance instead of spending years in turmoil.

      I had a fusion 14 years ago with chronic pain from the onset, I was made to believe this is "normal" anyway cut along story short I can barely walk, stand or sit, my life have become dormant, in the last 12months Iv been told I could have ankylosing spondylitis then no you have loose screws and no fusion, no your fine we'll see you in march😡😡😡 now I think it might be faucet joint syndrome but have to find out for myself, sorry for the rant😊

    • Posted

      Hi Carolineq8, The rant is fine. That's is was I started this topic. I think doctors today put a time limit on you as they herd you in and out like bunch of cows. They rip off your insurance company and all they seem to want to see is the easy ones. I was lucky that after two years I finally found a doctor that really works hard to find out your problem. But I had to go through a few that really was a waste of time and money. I just think that this line of work should not be so fast moving and in some cases uncaring. Some of my doctors at first were so quick to tell me that there is nothing wrong when in fact, there was. It's is sad that this happens. Again, I think they should not tell people that they are fine and there is nothing wrong with them when they really just don't know. So I have found out that it is just like every other types of work. There're good doctors and there're bad doctors out there. You always have to be careful.

  • Posted

    Hi, I am freaking out. About two months ago I started having muscle twitching on my left Biceps and sometimes Triceps. Then I started having small muscle cramps that never goes like a full cramp. Now it did spread to my stomach and some of the back muscles. These cramps only happens when I activate the muscles, they are not involuntary.

    I also having breath shortening that I had before, but with the cramps I am worrying even more.

    I do have anxiety disorder and now because these other symptoms I am starting to worry even more and freaking out

    I am an athlete and all those symptoms feels very weird as I use my body a lot.

    3 months ago I had an MRI of my brain and neck because of headaches but it was all fine. I have almost a cervical disc herniation but it is not affecting the nerve. The headaches were caused by tension/anxiety. And now they are fine.

    I had headaches, palpitations, heat waves and lots of other anxiety symptoms. But these cramps are really worrying me.

    I never thought I would have this in my life and it is horrible. I just get worried it is something bad. Even when I am happy, the thoughts comes and then the cycle starts again.


    • Posted

      Hi acro1978, I'm sorry that you are going through this. My guess is that you might be female and reaching the ago of 50. But just guessing. I am 53 and male. Have you noticed any muscle weakness you lose?

    • Posted

      Hi Power tools. When you were first showing weakness and twitching did your doctors do an emg? When did you have your first emg? I cant believe they weren't concerned when you said you were having weakness. I am so sad to hear you were diagnosed and I pray you will be a miracle.

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