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  • Also my feet and wrists are shrinking and I confess I'm a little scared about this thing becouse shrinking and atrophy aren't Umn symptoms....my neuro thinks I have some sort of Umn syndrome but I'm afraid I'm developing even Lmn involvment.....I hope this will not turn to be als. Anyway luckily my progression seems to be slow. I'm still waiting to be called for the day hospital and still off from work :(
    Hi Paul, how are you doing? Any news? I'm the same, some days are better other are worse and still in this waiting land. I followed your advice of taking something for the pain and I can say it helps a lot especially when I have to walk a little longer. Stiffness is always present but not so bad. Greetings Kiara
    I will try to follow your advice even if I don't like to take drugs when I don't know what is causing the problems. I'm afraid that covering symptoms it will make harder to find the right dyagnosis (probably it's only a stupid thought). Anyway I agree that it doesn't make sense to live in pain when there are drugs that would help, I will start with some mild analgesics and see if they work. Here we had the snow last week...I used to love walking in the snow and skiing but this year I can say that I'm tired of it.....I'm waiting for the spring to come. Enjoy your days off from work. bye Kiara
    Maybe I 'd better to take something for the pain too, I'm not taking any meds and so sometimes is hard with this pain and stiffness. there's nothing new, I'm still waiting for the clinic to call me for the tests. things seem not to get worse but neither better, it's always hard to stand and walk for more than 30 minutes, arms are weak but the main problem are the legs. I'm happy to know you menaged to control pain. Let's keep on waiting in this Limbo land. keep me posted Kiara
    True that! Glad you have improvement . I see it can cause some tendon issues but probably no cause for concern. I will view the post in a bit.
    Hi Paul, I'm waiting for these damn tests but nobody have called me yet. I found that exercise is not very good for me couse the day after I feel worse and with less energy so I only walk as much as I can. It's a good new that neuro said maybe you're recovering, keep on hoping! As you said I also think that maybe our problems are related to our scoliosis and neuros are missing something......take a look at tethered cord syndrome...some symptoms match with ours but it doesn't explain the weakness and twitching I also have in my arms. How are your arms? keep me updated I will do too. Kiara
    Doing ok, dosed 4 mg of Tb4 today. Sleep is back to normal. I recover faster on all this stuff but I don't think it is curative on its own. Will see what upping the dosage does.
    I really have actually cut back my excercise because I have been mentally consumed researching. Hopefully get a bit better balanced soon. May be doing the Tiresimtiv trial in a week or two. How many doses IGF so far?
    Labpe has tb4 at twelve bucks now. If u enter code valentine 15 it drops to 10, might be the place and time for your IGF too.
    Hey Paul, yes I can excercise. I can actually still run. Can't swallow or spit while I am though, so it is challenging.
    They pegalyze the MGF so that it remains in circulation long enough to have systemic benefits fwiw. Just thought it might b an alternative if u were on the fence about IGF. get tthe benefit without the sides.
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