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  • Hi Lolita it's a good new you're pregnant of baby three. I had some tests last friday, my emgs were not normal they found fibrillations fasciculations and myotonic discharges....they said it doesn't really seem to be als but there's something wrong going on with my muscles, I also had some blood tests and now I have to wait for the results and then call the clinic. Symptoms are slowly getting worse, I hope they will find what the real problem is. Wish you the best!
    Hello Lolita, I was reading your posts and I am glad that you have been told that you don't have ALS. I have been investigating my symptoms for now almost 5 years and it is really frustrating! I too have been told to look into CFS by an internal medicine doctor. I was also told fibro by a rheumatologist and some sort of radiculopathy by a neur-muscular doctor. Lastly, i had a number of MRIs that found a tiny benign syrinx in my spine...which apparently isnt causing any symptoms. Anyhow, all this to say that it is fairly common for doctors to not really know what's going on. I hope that you get better, if you do, let us know what helped the most. A lot of people are in limbo here. Best of luck!
    Hi Lolita thank you for your message, I'm not going very well... general weakness is getting slowly worse and I have problems walking couse my legs are stiff and heavy, especially the left one. I can't walk more than 15 minutes. I asked about ME to my gp, he says I have symptoms like brisk reflexes, ankles clonus, severe stiffness that are uncommon in ME and are typical in some sort of upper motor neuron damage. Anyway I'm still waiting to have the day hospital in a specialistic clinic, the are very busy and said I have to wait for another three or four weeks. What about you? I really hope you're getting better. greetings from italy Kiara
    Hi Lolita, I didn't know about your diagnosis of CFS. Thank you for your advice I will ask about CFS to my neuro, at the moment I'm still waiting to have some exams done in a specilistic clinic...they are going to call me for a day hospital. I wish you to get better soon.
    Hi, I see that you went to Mayo. Did you go to Rochester? I live in Wisconsin. I've had every test in the book (4 MRIs, spinal tap, evoked potentials, 4 EMGs) with different results. I'm not really happy with my doctors because it seems like they don't communicate with each other. Did you like the care at Mayo? How many days does it take? I like the concept of a bunch of doctors working as a team on my case. If you have any info about Mayo I'd appreciate hearing it. Thanks. Paul
    Hi Lolita, I'm so happy for you Mayo specialists said It's not ALS and I hope you'll find an answer asap from other specialists. I'm not going very well, my scary symptoms are getting worse, I'm trying to antedate my appointment with the neuromuscolar specialist but It's not so easy....It seems I've to stay in this Limbo for a long time yet. Take care, hugs.
    Hi, how are you? how did your appointment go? please let us know (((hugs)))caroline
    Hi lolita,thinking of you for today and hoping you get a bit of good news.
    Welcome though we're all sorry you had to find us! Take care and try to have a Happy New Year!
    Hi lolita,just wanted to wish you and your family all the best for the newyear.
    Anything planned tonight? Dont get too hung over for your appointment lol.
    Take care (((hugs))caroline.
    Hi Lolita,
    Welcome to the forums, sorry you have to be here. You have a lovely family! I have found this a great place to get answers and to prepare for what is to come. People here understand what we live with while our friends and family don't always! Nice to meet you.

    Hi Lolita, so you're going to Mayo in a couple of days, I hope everything will be fine. I really care, keep me updated.
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