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  • Could this be ALS?

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    Old 03-03-2007, 02:24 AM   #16
    jeff001
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    Re: Could this be ALS?

    Hi deb,
    I have been also suffering with the same/simular symptoms. You should keep a daily journal of symptoms becasue likley these symptoms are changing by very small amounts that you may not remember and this could help indicate a trend and help with a dx. Also befor you sink too much into despare about ALS or MS you really should look into Lyme. It is the fastest growing infectious disease and is known as the great ALS imitator. Has anyone tried an antibiotic such as Doxycyclene? Anyway see the following thread read the symptoms about the third post down.

    Search on the healthboards for Lyme

    I hope you can feel better soon!

    I saw three doctors that were watching me get worse and worse but wanted to run endless tests that always came out normal or 'nearly normal' (some tests like liver were slightly out of spec but close enough), they had theories but would not treat until the blood work firmly diagnosed an illness. I was very frightened as I saw things get worse and worse and the only thing they wanted to do was give me pain meds or suppresants to ease the symptoms not fix the problem. Enough zombie drugs can make all the twitching go away but I was still weak. Luckily we found a Lyme aware Nurse Practitioner who started me on the antibiotics that saved my sanity and possibly more. I had no idea (and neither did any of my first three doctors that Lyme or other things like it could cause these symptoms.

    Another thing that is useful is a good advocate. My wife finally after sitting on the side lines for three weeks of me seeing doctors, found her inner tiger and took charge. When it was just me talking I got this sort of reaction from the docs that I should 'Take it like a man' (they never actually said this but I think it was in their eyes.) I did not have the energy or the internal fight to argue with them. I think at least one of them after looking at my nearly normal blood work thought I was over dramatizing the symptoms. (Why they would think I would pull 80 bucks out of my wallet and give it to them so I could just complain to hear myself, I do not know.) The other mistake I made was to over think my symptoms. I tried to explain the exact nuances to the doc, not realizing they really were not really listening. When my wife started going with me into the exam room for the first time the doctor had a completely different personality then he had with me alone. She would cut off my long descriptions and basically said to the doc, "he has told you the symptoms, it is your job to fix him". She also insisted that if they did not know what it was to refer me to a specialist that might know. And asked things like "when is this going to happen?". Up and until this point the utter frustration and the flustered feelings I experienced was huge and at a time I had no energy or strength. Two of the doctors wanted to say fibromyagla or CFS (chronic fatigue syndrome) but they told me that they did not really believe this existed (most doctors do not). I volunteer in emergency services in my county and it was the county 911 coordinator who recommended I go and see this nurse practitioner. The Nurse Practitioner was the first to point out tick borne infections and how they look like fibromyalga, CFS, ALS, MS and others. And said a course of antibiotics may help determine if this could be it. It made a huge difference in my life. I took a while and I got better then worse then better (and still do). The other thing about this disease is how the symptoms will come and go and re-occur monthly. You women out there who may have this I am sure will have to convince a doc that it is not menstrual. Presumably they will not assume that about me (although I am sure some of them suspect it anyway). I am not out of the woods yet, a problem with doctors and 45 year old men is if you complain about anything it is probably your heart. "Get more exercise, my doctor said." Well heck before this started I hiked daily and am a scuba diver, pilot, swim weekly, and when I can travel to Hawaii (about 4 times a year) I body surf. Talk about taking the fat off! I bicycle (had to stop that too) and went to the fitness center every day. This last one I have started again to try and rebuild the muscles I have lost along with now swimming 3 days a week (indoor pool at the community center). I would ask how much more exercise should I have been doing? In their defense I had basically stopped all these activities for three months before I saw a doctor. But gee-wiz they could have asked. Anyway I was referred for a stress test, EKG, Echo, Cat Scan (I think my cat at home could have done a better job) all this was negative including the stress test before I could get referred to a neurologist. After all this testing is when my wife, god bless her, got really involved and started going with me into the exam room. I think this made the doctor really un-comfortable when he did a, hmm, very personal exam. Now I say great! Let these clown feel ‘uncomfortable’. I have felt ‘uncomfortable’ for years. Just having her there helped and when she found her voice things really started to happen. When I said it, it was whining when she said it they took action! If you have a mate or friend that can be in this role then get them. Mates I think are best because when exams or nudity come into there is just no problems. You will likely have to sign some sort of release paper to the health facility so they can legally talk to them but I say do it! But make sure she or he is the kind of person who will demand results and will ask questions! Another lesson I learned is what I momentarily thought were stupid questions my wife asked turned out to be very good questions to ask. I suspect that since men and women think differently having one from each category asking questions helps. This in my case really helped.

    see
    [url]http://www.healthboards.com/boards/showthread.php?t=259463[/url]

    [url]http://www.healthboards.com/boards/showthread.php?t=477055[/url]

    jeff001

    Last edited by Administrator; 01-13-2017 at 09:18 AM.

     
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    Old 03-06-2007, 04:00 AM   #17
    music12
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    Re: Could this be ALS?

    I don't know if anyone has mentioned this as I didn't read all the replys but most labs do not know how to test for Lyme; therefore, the results are often "negative". You need to have your blood sent to IgeneX in Palo Alto California or Bowen Lab. Also, Lyme is not diagnosed on lab tests alone. Many believe that Lyme is the causative factor for many illnesses these days - Lupus, CFS, ALS, MS ..........

    All the best

     
    Old 05-25-2007, 12:43 PM   #18
    nightangel
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    Re: Could this be ALS?

    Please excuse me for just jumping in before I read all the posts. Ten years ago my Dad was losing weight and not looking well. We started going to all sorts of Drs., getting this test, and that, and there was no diagnosis. Near the end of his life, it appeared he had a stroke, and possibly subsequent ones. It was not until he passed away that he was diagnosed with ALS. I often wonder WHY? Why didn't someone catch it, or perhaps they did, as two days before his death he saw a Neurologist who put these pins in his legs and monitored a screen. He said it should be a flat line, but it was going crazy, up and down the screen. He did one leg, and my Dad sat there, just "out of it", and the Neur. said there was no need to continue. The only other things I can report as far as symptoms were that he had a lot of mucous, and difficulty bringing it up, felt like he was choking, and near the end, I could see the twitching, even as I held his hand while he passed. The nurses told me he was "gone", but I said "NO, I still feel his pulse and he's still twitching". They said that was normal for a few minutes, so I just held his hand until I felt no pulse and the twitching stopped.

    At a time like that, you don't know what to do. In the ER, (after my Dad had fallen), the Dr. told me the best thing to do was let nature take it's course and to do no heroics. (He was 76)

    Looking back, what did they miss? What did I miss? Could anything have been done?

    I apologize if this is upsetting to anyone; this is the first message board I've found that actually dealth with ALS.

    Does anyone know the latest treatment and outlook for the disease?

    nightangel

    Last edited by nightangel; 05-25-2007 at 12:47 PM. Reason: Edited to compare ALS to Peripheral Neuropathy.

     
    Old 05-25-2007, 12:49 PM   #19
    nightangel
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    Re: Could this be ALS?

    I don't know if I'm editing correctly or not, but a friend of mine has Peripheral Neuropathy, with symptoms very much like ALS. She also has MS and Porphyria, which makes her condition very grave, but she's a fighter and a trooper and she doesn't give up. I hope none of you do either.

    nightangel

     
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