I’m 17-may have MS/ALS/what else could it be...
Posted , 4 users are following.
Ive been having progressive issues for the past 2 months. My story starts on August 10th with a strange feeling in my left leg along with head pressure, couldn't describe HOW the leg felt, just felt off. This began after a swollen lymph-node in my neck which has gone down. Then began the muscle twitching, it is wide spread, I DONT have it in my tongue, although it seems to be getting worse so who knows. Shortly after, my legs began getting very tight. And after that the tightness went to my left arm and then my neck. This was on and off but now constant. Walking is hard for me and I often lay down for some relief. My throat is very tight and full of phlegm (have been sick recently, at first phlegm was yellow) which is now white. My ears have lots of pressure that varies throughout the day and is very debilitating when it gets bad. I cant go to school and am tired most of the day, have trouble sleeping as well. I FEEL LIKE IM DYING. It really sucks..
TESTS IVE HAD DONE...
EMG-clean
BRAIN MRI w/contrast-clean
Ck level-normal
normal blood tests- normal
clinical neurology appt-normal
WHAT SHOULD I DO );
0 likes, 7 replies
judith38701 kira_22267
Posted
*Sounds like what I have
Been chasing for answer for 6 yrs
If they cant find anything wrong in your tests they will start saying U have mental issues
And it goes on and on
I am now about imobile...
Scary...
kira_22267 judith38701
Posted
If you dont mind me asking what are your symptoms?Also just today I noticed tongue fasics..so thats new 😕 knowing my luck I probably have bulbar
judith38701
Posted
Stared as a tightness in the right side of throat..then tightness thruout body as though I was being squeezed tight.
My ankles and legs hurt and then my back got tight and my chest and rib cage area.
It all statred with the right side of my jaw with being tight
Now both jawbones are bone on bone... And head feels like a vice
None of the muscle tightness doesnt show on radiology pics so I have had a very long sad 6 yrs and now I have no clue where to go anymore.....
kira_22267 judith38701
Posted
Sorry to hear about your struggles, at least you don't have als though..
shadow1975 kira_22267
Posted
Been going down the same road as you for about the same time and have had the same or maybe more tests done. Do you have any muscle Twitches? I been diagnosed with anxiety, benign faciculation syndrome, tremors, but nothing set in stone as to whats causing it. I know that stress and anxiety make it worse. my next approach is with a holistic doctor. I know someone that was going through the same issues then had them resolved with natural medicine and methods.
Guest kira_22267
Posted
Hello!
Research VGKC antibodies. They are very rare so you're chances of having them are slim and I don't want to get your hopes up, as I now how hard it is to be struggling with an illness that can't be figured out. However, I was like you with symptoms, including tongue twitching and widespread throughout my body and lots of other symptoms . I had a year of all the usual tests at my local hospital, EMG, NCT, MRI, EEG, bloods (including lot of other antibodies but not VGKC), and all was apparently normal. Referred on I had a VGKC test that was positive.
The other possibility is some sort of channelopathy.
Good luck, I hope you find answers.
kira_22267 Guest
Posted
Hi, I actually had some recent blood tests, and it is looking like I have hyperthyroidism. Which can cause a lot of things to happen, I am hoping that it is that. I have been prescribed gabapentin and it seems to be helping, I am now in school again and excersising in gym. I hope this is it