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  • Hi Kiara, How are you? Any updates? I hope you have good news. I found out I was pregnant with baby #3. I went through the whole 1st trimester not even knowing because I was blaming my pregnancy symptoms on the things I already had going on. It has been a blessing to go from my frightened state of mind last year to now expecting another baby...Anyhow, I've got you on my mind and hope to hear from you.
    Hi, I am so glad to hear that they ruled out als! Thats great news! The neuromyotonia sounds like a fitting reason!
    Strange isn't it? To find out, that an health issue is a positive message! I am not yet used to this!
    Theres no real change in my situation. Symptoms progress- weakness, wasting (especially in hands, feet, neck)... Things get heavier, more exhausting and more painful. Thats it. Doing things like massaging my muscles with oil. Helps a bit against pain and cramps. At least my mind came to rest a bit more. Better mood, better sleep. And just wait for my appt in July, hope to find answers then!
    How is your vision? Did it turn back to normal?
    One more Q: did you ever experience such things like shortness of breath, swalloing difficulties, weakness/wasting/pain in your neck?
    Wish you all best, D.
    Hi Kiara, how was your stay at the clinic? Any news?
    Hope you are doing good!
    All best, D.
    Hallo Kiara, thank you for your kind words - I know, but sometimes its really hard to keep up hope. But today it is better - still cracking joints but better mood! I went swimming today, the only "workout" that works relativly painless (at least while i am doing it - afterwards is crap...)
    I read that you have troubles with your vision? Well, I am not anything like a med student, But my aunt had the same issues - when she was diagnosed with MS. She had a rough time, but now, she is in a quite good condition!
    I just hope the best for you! Keep me posted!!
    best, D.
    Hi Kiara

    I am having a hard day. No energy, lot of pain in my legs, one good thing not to much of the vertigo thing today. Had alot of trouble walking though. Keep me posted how things go when you get to the dr. (((BIG WARM HUG))) :smile:
    Hi Kiara

    I was thinking about you today. How are you doing? Don't you have an appt coming up? I hope you get some answers. I am praying for you. Love and Hugs!!!!
    hi kiara, thanks for your reply. And yes, I forgot to mention that: They did an MRI of my brain, back in Begining of March when I was in the clinic. Unremarkeable they said...
    How is it with you? Did you get any answers?
    I wish you all best, any many greetings to your beatiful Italy!
    Hi Kiara!

    I was suppose to have a repeat of my EMG last week with a new neurologist however she told me that I need to wait at least another 4 months since my first EMG which I had in January this year. I had another full neuro exam done, reflexes, babinski etc...I was told it was all normal. My symptoms remain unchanged. The worst is the weakness in my left arm and the fatigue feeling. I can no longer do things like I use to. When I pick up my cup of tea or fill the kettle with my left, I feel the urge to drop it as it feels so heavy compared to my right?

    I'm going to wait another few months and then return to the neuro for another check.

    How are you doing? I know you were due soon to have tests re-done? I hope nothing has progressed with you and that you start getting some answers and continue on with your young life. Maybe sometimes not being told 'what it is' is better? Please keep in touch and let me know how things are going. :)

    Faith xx
    Hi Kiara, I don't come here much as I am trying to get treatment for my CFS..back in school and kids and expecting another one..CFS in Europe is known as myalgic encephelomyelits..Not sure if I spelled that correctly, but they call it ME for short over there...Anyhow I was thinking of you and wanted to know if you got any answers yet from the Dr...I hope you are doing well. Let me know how your doing.
    Hey kiara! Thanks for the MSG. Yeah I understand where you are coming from, they are rare in nature, unpleasant and most noticeable mind troubling. It's absolutely a breath of fresh air to be talking to someone like you, feels like I been alone for 3 months now with no understanding from anyone. In my situation I hope I have Kennedy's I feel it's the best case scenario, it's sucky but it's a diagnosis at this point I could live with. What's your story? Share anything with me, I eyes, ears and heart are here for you. Trent.
    Hey kiara, my name is Trent(tb12) . You have commented on a few of my posts. Just thought I would say hi! I think it be nice to make a few friends to talk about our experiences. How's it all going?
    It's hard not to get depressed. I feel like I am just existing now. Friends and family are doing so much for work, school, and fun. I remember what it was like to have energy. Sometimes I feel like I have no future. Just drag myself to work, take my meds, do the basics and all my energy is gone. I was about to go for a walk today but then my legs got shaky. It's discouraging.
    Kiara, how are you doing? Update on my condition - my legs feel better (Zanaflex helps, I am taking 2mg at night and 1mg during the day). But my shoulders hurt almost all the time. They pop and crack and feel very small. I get a throbbing pain on the outside of my shoulders and down into my biceps. I went to the grocery store the other day and had to carry a basket around. When I got home, my left arm shook (tremor) for a few minutes. It was moving several inches in both directions. I don't know what this is called but I need answers. There has to be something more than just these EMGs. Hope you are doing okay. paul
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