physandsjs18
New member
Good Morning,First, please let me say that I have been reading this website for the last two weeks and what a great group of supportive people!I am a 38 year old American living in Australia and I was hoping I could tell you my story and get some opinions as to what you think.Here is the list that I prepared for the doctor which may help:Around October 6th, I started experiencing headaches which is very unusual for me. The headaches were accompanied with neck and shoulder pain. Had massage on October 9th and it hurt like hell.Developed an eye twitch in my right eye soon after. This lasted for a few days and I remember every time I would yawn or scrunch my face the eyelid would twitch.Googled headache and eye twitch and came up with brain tumour. Went into a complete panic! Then I noticed my right arm bicep twitching a few days later.Went to GP on October 16th and told her my symptoms and that I wondered if brain tumour. She said symptoms sounded too variable but would give me CT scan to ease my mind.October 30th – Clean CT scan.Twitching continued in right bicep (felt like nonstop) and then moved to left bicep and stopped in right bicep – thought strange so Googled just muscle twitching since no headaches anymore and BOOM found the dreaded disease! I remember thinking I was concerned as mine had only been in my eyelid and right bicep when I first googled and I was more hoping for the all over twitches like everyone else (go figure)!Within a few days twitching moved to 95% of my body and every part of my life is being affected. It is really taking it's toll and I have a 7 year old and 2 1/2 year old twins and of course have myself gone. My husband thinks I am nuts and we are walking a fine line. I cry all the time just visually thinking of that disease.I do not notice the twitching when I am up and moving. I notice it when sitting at desk at work sitting still, relaxing on couch at night or when wake up in the morning.Feels mostly like popcorn popping at different parts of my body or strong jolts. Sometimes get the shaky vibration ones but mostly just “pings”. Do not occur together…one body part will twitch and then another.Parts affected in order of occurrence:? Eyelid? Biceps? Calves? Thighs (front & back)? Forearms (front & back)? Hands? Feet? Back (rarely)? Buttocks (rarely)Twitching has now been happening for approximately 39 days since start of eyelid twitching but has become more widespread and stronger.Other relevant issues:-I have been under quite a bit of stress for the last year as I had a fallout with my inlaws. I was very close with my sister-in-law and really wear the stress of us not speaking as I don't have any family here. I do, however, have great support through many friends. But the family fallout is something I would think about daily.-My husband is a stay at home Dad and went back to work part-time in the evenings right around the time this all started.-I was panicked about a brain tumor when this seemed to start and have always been a bit of a panicker about my health.I have been to the doctor and had blood tests and they found that I was Vitamin D deficient (27 - should be between 75 and 250) and my ALT is elevated a bit to 38 with the normal cut off range being 30.I did a Google and found that Vitamin D can be associated with muscle twitching but mine just feels too "angry" to be just that.I was then sent to a nuero for what I thought was going to be a consultation but it was actually for my carpal tunnel and he did not want to humor my questions at all - he was a retired neuro who was clearly there just to perform the tests and was over the whole bedside manner thing. BUT when he did the test he did stick a needle in my bicep and the muscle between my index finger and thumb. Is this the equivalent of the EMG's that you all talk about on here? Would that have shown anything sinister? I am going back to my GP today to get those results. He only stuck the one arm and not the other but if this was the same type of EMG that you talk about when you say "clean EMG" and that was the arm that first started twitching and there are no problems can I assume that it is okay? He did confirm carpal tunnel in both wrists.I don't believe I have any weakness but it is amazing how weak you feel just from thinking you may have something dreadful. My legs all of a sudden feel like jelly! And the fatigue from being so stressed out. I am not eating at all and have lost about 10 pounds in one week!Thank you so much for reading this post. If you have any insight, it would be greatly appreciated.Roxanne
Look, if you continue to Dx yourself you will drive your anxiety - surely you have better things to do with your time (mend bridges?) Surely also, there are many things in your life that you can enjoy and deserve your focus more than twitches. A quick read through here will assure you that there are many others who have the same symptoms as you and have been around for many years with no progression of illness and no fatalities. Good luck.