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  • Hi Paul,

    I was wondering if you could send me a quick update on how you are doing?I have such similar symptoms to yours, with the same presentation of perceived weakness, shaking when trying a push up, etc... I have gone through many tests and looked at so many possibilities, nothing has helped. How about you? How are things?
    Hi Paul,
    I had my appt and just last week finally had my NCV/EMG. It was normal, yay! I am still having some issues though, numbness in fingers on left hand, muscle twitching, perceived weakness in both lower legs and also some stiffness and muscle pain. I have been going to PT. According to my PT every muscle in my left leg was incredibly tight. After he stretches them my leg is so weak I have trouble walking for the next 3 days ugh. But I think it has helped my overall range of motion with my legs i.e. I can bend my ankle more etc. For now I have been diagnosed with Post Viral Syndrome (which is an umbrella for CFS/ME that occurs after a virus.) It does some to fit since my muscles get fatigued or stiff after activity and get better after I lay down. I also was diagnosed with lower back issues: pirriformis and sciatica which do not help matters lol! I hope all is well with you. I read your posts and I know you are still trying to get some answers, hang in there!

    Dean is our clinic here in Madison :) We used to go to Froedert when we lived in Milwaukee. I have considered it may have been the antibiotic since I have a history of allergic reactions to antibiotics..I was on Doxycycline this time which can have a host of reactions. I see you were on Cipro. Oddly enough about 12 years ago I had a serious reaction to Levaquin which is like Cipro it messed up my eyes (lots of floaters) and it also gave me some sensory issues at the time tingling etc. Took me about a year to get better. I am betting that could be a big part of your cause. It is known for causing tendon issues.

    I see my neuro on May 15th. Feels like it is taking forever. I am seeing some improvement though, I like you could barely walk when this happened. Almost fell outside my sons preschool!
    Hi Paul,

    I see you are in WI. I am too, I have not had my neuro appt yet and wondering what you think of the neuros you have seen in the area. I am going to Dean Dr. in Madison..Thanks :) Deb
    Hi Paul, I hope you have a nice Easter time despite symptoms. My legs are definitively getting worse...the more I walk the more they get stiff tight and heavy.....after 15 minutes of walking I feel like having blocks of cement attached to my feet and a strange feeling of pressure in my head, I'm often dizzy and have poor balance.
    Hey champ, thanks so much for the MSG and support, I'll definitely keep you updated and please do the same with me, don't hesitate to MSG and talk to me, I think the best thing we can do is help and educate each other as we go through this stuff. I definitely will be getting tested for Kennedy's.
    when do you have your next appointment with neuro? my legs are thin too especially below my knees and my ankles are wobbly and hypermobile.......I hate this body, I was so fit and healthy in the past that sometimes I cannot believe this is happening to me and I keep on wondering why? I know having a bad attitude it doesn't help but it's not easy to be positive in our situations. I would like to have a dyagnosis as soon as possible but if the dyagnosis it's a neuro degenerative disease I don't know how to deal with it......it's hard, every day, minute, hour is hard.
    We have the exact same thoughts. I was out shopping yesterday. I remembered being in the same store 1 year ago, carrying a box, walking effortlessly. I saw the other customers and was jealous of how they could walk so easily. I have walked on my treadmill more recently but I am taking pain meds. My legs are really thin. I have to try SO HARD to do stuff and then my energy is gone!
    It's really frustrating endeed, I feel as life of everyone is going on instead mine is interrupted.....I saw people around me walking without any problems while I struggle only moving in my house. I also think a lot about my past when life was easy and beautiful and when I woke up with energy. It's not easy but we have to be strong and have hope...at least until we have a dyagnosis. sending you an hug
    Hi Paul, I'm not very well as usual, drugs help with the pain but I'm always too stiff, my legs feel tight and It's hard standing. Walking is better that standing still but I can't walk for more than 30 minutes. Shoulders and arms are weak and stiff and cracking too and just like yours they use to shake when I lift weight....I can lift the same weight that i lifted when I was healthy but now it requires more effort and after that there are tremors. The clinic hasn't called me yet so I'm still waiting. My feet and my ankles are really skinny now and my hands and wrists are getting thinner too, I don't know what to think but all these symptoms that are ruining my life. My neck is also very stiff and my spine keeps on cracking too. Let's hope to have an answer one day.
    Hi Paul, Your situation sucks and so does mine. I have been trying to figure out what's going on with me for about 4 yrs now. It started differently from you, in that my resistance to exercise came on slowly at first (unable to run as fast) and got progressively worse. I saw many docs, had 3 EMGs, 5 MRIs, blood work, etc... 1st emg clean, 2nd kinda dirty (similar to your results), 3rd clean (???). I twitch quite a bit and dont have a lot of tolerance for exercise. I was on cipro at some point when working in Peru but my symptoms developed a lot later (about 1 yr). Did you have an MRI of your spine done? A good MRI that takes about 30 minutes for each section? There is a disorder called syringomyalia that could be responsible for your symptoms. It can be a rather quick onset brought up through exercise or a hit to your spine. In my case I have a tiny syrinx that neuros say is benign...but if you have a larger one, than that could be something causing you some pain, etc...
    Yes I worry about LMN too because if atrophy. My shoulders used to be very muscular from weightlifting. Now the atrophy has loosened up the whole joint and is causing me a ton of pain. Even driving aggravates my shoulders. Hopefully you get into the day hospital soon - and they say more than 'wait and see'! I wonder if we have a condition that doesn't have a name...
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