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  • Hi Matt,

    Did you ever get a reply from davegud about how he was doing? He was the one who had large MUPs and whose dr was an expert in the area and said not to worry because his fasics didn't show up on EMG. It is weird because his second to last post said that he was getting an EMG on Oct 11, 2011 and that he was hoping it would remain the same. His last post was on Oct 13, 2011, in response to someone else's post, and he didn't mentioin the EMG results.
    Hi Matt,
    I wanted to update you on my last Als clinic appt. After both Als doctors have told me nothing was wrong with me, even with my hyperreflexia, Hoffman, and jaw jerk this time she told me I have upper motor neuron syndrome. I
    Dont know why they didnt tell me that at the last few appts. I always knew something was wrong back in 2006 when all this started. I still don't have a definite D X yet of PLS.
    Hope you find answer and help for your issues. Good luck to you
    Hello Matt, It has been quite the ride...At about the same time I was being told of the possibility that I may have CFS instead, I was apparently pregnant and didn't know..I went through the 1st trimester before I figured out that I was because I was blaming my symptoms of pregnancy on all the stuff I had going on. Anyhow, I was told CFS based on my history with the EBV virus that caused mono. I was never the same once I got it, but went through periods of feeling better. I finally found a doc out in California to treat me, but after the baby is born. His nurse did relay the message to me that most people feel better/remission during or after pregnancy. I admit I do feel much better lately. Holding on to hope. Anyhow, I hope that you find out your situation is something not as serious too and get a good doc to treat you as well.
    I wrote a response to your post but somehow lost it as I was hitting send. I made another post under "EMG question" thread that gives my thoughts.

    I am not as trusting in doctors as others on this forum. Trust your instincts. I was athletic like you and I knew something was wrong. Turns out I was right all along. Those EMGs are not perfect. Be relentless. Good luck.
    hey matt - thanks for contacting me! yeah, still having problems. have been told it's a rotator cuff issue that probably started a little over a year ago, got a little better when I stopped doing my push ups, etc, and was then re-aggravated a couple of months back. as you might expect, i'm having trouble believing that. I've been doing PT and he's told me that the strength is improving, but i'm doubtful. and now it aches almost all the time, where it didn't before. maybe that's a good sign? who knows. also, i'm convinced that I've got atrophy in the shoulder, as there is this area that is more prominently...dented, maybe, than the other side. I had an EMG in February on the left arm and shoulder and it was normal, but i'm still not convinced. I really just don't know what to do...I forget, are you in Toronto?
    Hello Matt,
    I still do not have any answers to my symptoms but they still continue. I am seeing my neuromuscular doctor in May. My hometown neurologist recognizes the UMN issues and thinks maybe a slow pls.
    I have found nothing that help my symptoms go away. I too have cysts in my spine, although not a syrinx, they are not the cause of any of my neuromuscular issues.

    Have your symptoms been progressing? Are your neurological exams still normal?
    I wish you luck in your up coming neuro appt. please stop back and let me know how you make out.
    hey matt thanks for your note

    yep ive had probs for over 4 years- emg with polyphasic mups in both legs and soem in arms at christmas- the other 3 emgs and mris are clear. a few fasiculations too but no diagnosis
    think next stop is muscle biopsy i think. cant walk for more than 20 mins now - mainly housebpound - recently some muscxular pain too
    main probs fatigue and twitching/vibrating
    was beserk with anxiety but pretty cool now-
    think spinal cord damage maybe me too
    keep in touch mags
    Hey Matt, yes I had 3 MRIs of my spine and also an MRI of my brain. Nothing. (But I do wonder about the fact that only that one doctor looked at my CD, what if he missed something?)

    As I'm sure you do, I've looked back 1000 times over the past few years. I just turned 41. Maybe I started showing signs a couple years ago - every once in a while, my right foot (always the right) would 'skid' on my treadmill. But I was running 45 minutes so I didn't give it much thought. I was 39 at the time, and at 165 pounds, I was still doing multiple reps with 225 on bench. Now my shoulders always have a weird throbbing pain. If I try to lift weights, I never get the "pumped" feeling. It's like I can't add muscle. And I totally get your questions about the progression to clinical weakness. If you start as an athletic person, it's like your symptoms are ignored. My arms shake now after carrying grocery bags. Okay, not "clinical weakness" (yet) but, something is degenerating.
    Matt,
    In May, I was given a clear exam by the ALS Director at the Cleveland Clinic. An expanded emg was done by an ALS specialist with decades of experience. He saw a couple of fascics that's it. He said it was a normal study (my 9th in about a year and a half ). My symptoms remain constant and getting worse. I recently saw my neurologist at the local university (ALS specialist). He cleared me once again and said my chances of ALS were 1 in 100,000. He's the third neuro to express it that way. I was told that last September by the ALS Director at M@yo Clinic in Phoenix. I am going to M@yo Clinic in Jacksonville FL on Monday.
    Glad things are better for you. I appreciate you checking with me. When you get enough post we can send private messages. I've been laying low regarding posting. I am concerned but want to respect this forum. I'll try to update after the trip next week. Hopefully they'll find a curable condition. Curtrill
    Matt, nothing new. SFEMG was negative for MG. Just continuing to get weaker. Doctors are only offering meds and no answers. They still insist it is not ALS. I'm more than grateful for that. Wish I could find a way to turn this around.
    Matt,
    Thanks for your recent post. Sorry for the newly found weakness. I believe your extensive timeframe since symptoms began and your weakness being proximal are well in your favor. How's the leg weakness.....anything constant and progressive?
    No clear answers here. Just constant fatigue in limbs, especially calves and loss of muscle tone. Hands aching in the thenars. Both showing indentations, especially the right where my symptoms started and are dominant. Muscle biopsy gave a thing or two to look into a few months but yielded no clear explainations of symptoms. More tests at clinic tomorrow. I pray he will find something treatable or give the all clear again.
    Curtrill
    Matt,
    No relief yet. Now being scheduled for a muscle biopsy. Prayerfully treatable answers will be found soon and als will be firmly excluded!
    Matt,
    I have had every test my neuro at als clinic can think of except muscle biopsy and spinal tap. He doesn't think either would be beneficial.....tons of bloodwork since last December. The weakness while standing or walking 24/7 along with the loss of muscle tone and soft tissue in ankles and feet are the most concerning. This doesn't just happen in an otherwise 47 year old. Anxiety doesn't cause tissue to disappear! Not according to my GP. Since my weakness is not clinical and my emgs show no denervation the neuros are convinced there's nothing to be concerned about. Wonder how they'd feel if they had to make their rounds one day like this much less a year! Anyway, as long as emg's are all they say they are I'm good. I've had all limbs checked over the course of now 5 emgs in less than a year. My right calf which gives the most trouble has been needled 9 or 10 times by 5 different neuros! I am thankful. But I do understand your comment that does nothing for the symptoms.
    Curtrill
    Matt 21,
    I'm 47. Still constant weakness while standing or walking. Overall, unusual loss of stamina in limbs. Now five emg's showing no denervation. Legs feel like lead every day. Calves are flaccid despite daily activity and exercise. Neuros continue to say no way to ALS. How does compare with your situation? Curtrill
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