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  1. Jric80
    12-16-2018 08:26 AM - permalink
    Thanks for the note. Its great to hear you have moved on from this, even if you're still dealing with symptoms. I have often asked myself if the stress this past year has made this all worse (or even cause all of it to happen). And I've tried to keep off this forum, and trust what my doctors are saying. Although my docs have little to no idea what caused any of this. Things just don't seem to get better for me. And new symptoms keep coming. Maybe its the stress? There is nothing I would like more than to feel normal.

    I don't think this was/is Lyme. I've tried antibiotics 3 times without any improvement. If you don't mind me asking, how does your speech bother you? My issues come from a deep pain in my ear, which impacts my tongue causing some speech issues. I also have pain in left leg, and twitching in both calves. Now I'm getting this odd twitching in my throat/soft palate area. I honestly don't know what's going on.
    Any thoughts? Maybe I've just gone crazy...
  2. Jric80
    04-04-2018 06:29 PM - permalink
    Hi there. Maybe it would be easier to share email addresses or contact information. I can understand the concern and anxiety and maybe we can discuss ways to help. Please let me know.

    Also the neurologist appointment went well last week. He doesnít believe Iím dealing with ALS. He did the strength tests and everything was fine. He thinks itís sensory polyneuropathy. Multiple nerves getting affected at the same time. He specifically said als doesnít have pain or sensory symptoms. Just like everyone has told us before.

    I still donít have a cause for all of this. And still have numbness and pain in leg, with weird face and tongue numbness again lately. Also my tongue is swollen which has created some weird speech sensations, furthering my fears of other things. He gave me prednisone to relieve the inflammation but not much help yet.
    Perhaps we can talk more via email or phone. My name is Justin and live in upstate NY.
  3. Consumedbyfear
    03-26-2018 06:54 AM - permalink
    I was the same with lyme diagnosis but my infectious disease doctor still believes I've had it along with glandular fever even though the test for that came back negative aswell ! I'm still waiting on my referral to a Neuro so I believe your further down this horrible road than I am. In saying that we have both been told by all the members on here that it doesn't sound like als which I'm hanging onto as I try and get back to some sort of normality. I'm not an anxious person and take things as they come usually but at certain points lately it's getting harder to be this way . With the joint pain and numbness you could get checked for vitamin deficiency but I'm not medically trained in anyway so don't feel I should give any advice but if you need to talk about any symptoms in happy to do so as we have a lot of similarities in that regard. Good luck at the Neuro today
  4. Jric80
    03-25-2018 03:00 PM - permalink
    Thanks for the message. I did not see any improvement with the antibiotics after 30 days. I received my Lyme diagnosis from a local Lyme literate doc. It wasn’t based on a lab Corp or quest blood test, but rather other labs (IgeneX). I have been told by my neuro and primary it’s not Lyme due to the lab Corp results. I have now stopped taking the antibiotics, and don’t have another diagnosis right now. I see my neuro again tomorrow. Any guidance or thoughts on what this could be? I’m still dealing with random muscle twitches, pain in left elbow/wrist, pain in left leg and knee, and numbness in tongue.
  5. Jric80
    03-07-2018 06:32 AM - permalink
    Hi there. Hope you're doing well. I read your post from January and wanted to see how you're doing. I've had multiple issues, including muscle twitching all over, and some speech issues with my tongue feeling swollen at times, with the same white coating on it that you reported. I also was just diagnosed with Lyme and prescribed antibiotics 10 days ago. No improvement yet.

    How are you feeling? Has anything improved? It would be great to know. This website is great to help find some answers. Thanks.

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