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  • Hey, just saw your visitor message and that made me go back and read your posts.how are you holding up? I saw all the cncer stuff and then the misdiagnosis and als scare. Have your symptoms improved a bit. I'm undiagnosed, but still with the same symptoms, maybe ever so slightly worse ...

    Just wondering if you have figured out anything regarding your condition. I'm still with all the same symptoms but gave up on trying to see what i could do to get better. I definitely feel a lot more stiffness in my back and an obvious feeling of exhaustion when i do any physical exercise. I do have regular neuro appointments but it's just to keep me in check. I', thinking that maybe this is spine/postural related...who knows!

    Cheers, Matt
    Hi Jram...I'm sorry to just now be getting back with you...I was unable to send you a PM so am leaving a message for you here...I would like to speak with you about your current situation and see if I can help sift through and see what we can figure out...Do you have fb possibly so we can add eachother and chat there..I will leave my fb link here and if u have one please add me so we can chat...take care :) Robynn LeAnne :) https://www.facebook.com/MommyLondon
    Hi jram,
    Thanks for the message. I'mm sorry to hear you are going through these scary symptoms as well. From what I understand 4 years into cramping you should really feel reassured that this is a benign condition. We always have to remember that neuros have to say ominous statements to protect themselves as well. I still really struggle though because there are cases where CFS does progress after a year or so. I think you should feel a bit reassured since your symptoms have been going on much longer. This has been so terrible for me I've had to quit my job(I'm a former teacher) and it has caused a lot of stress for my husband and I. I wish there was just a simple blood test that could rule out ALS. Sometime my fingers cramp so bad I can barely change my sons diapers. It's such a tough place to be in. I think the odds are in our favor though, although that's not the most reassuring thing to hear. I'm always here to chat- so sorry you are going through this.
    My diagnosis is mitochondrial myopathy complex I and III. It took 5 years to get that diagnosis. It was found with a muscle biopsy. Your condition could be any number of things and only a dr can give you what you seek. You know your body and if you feel there is something wrong then find a dr who will listen. I went through several before I was accepted by a neuro at a univeristy hospital. Good luck.

    I am still undiagnosed although the shaking and intolerance are getting a bit worse. Similarly, the muscle stiffness is also greater after a period of inactivity. I am currently going through yet another round of blood tests and have another neuro appt scheduled for february. Hang in there, let me know if anything makes you better! I did follow the chronic lyme disease route for a bit and sought antibiotic treatment. It was helping slightly but being in canada, chronic lyme is not seen as a real disease and docs don't prescribe antibiotics in the same way as in the US. Anyhow, hope that you feel better one day! Cheers, Matt
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