View Full Version : Worried i have a MND or Fatal Disease

19-09-17, 09:16
Hi there,

For the past 3 years and over i have been battling with some weird symptoms, it started as a bit of weakness, then twitching and then progressed into other random things such as speech problems, tongue weakness, cramping and spasms especially inside stomach and back, vision issues, fatigue, pain, felt like i have lost some muscle tone and strength as well, even doing simple things like taking a shower or combing my hair feels hard especially on my left hand now days, even slowed or delayed feeling of motor movements, jaw issues and pain, i also easily get infections and have trouble with Lymph nodes in my neck and collar bone area which come and go and never cross 1cm.

The list is literally endless, i have seen close to 30 doctors from different fields in the past 3 years or more, they have done Endoscopies, colonscopy MRI's ( Brain / Neck, Spine ) ANA blood work, Mastvia Gravis blood test, tumor markers, EMG's, NCV's , VEP,s etc etc..

they have found some issues but not the kind that can explain things or say im dying or give me a diagnoses, for E.G recently when i had my Esophageal Manometry done to check for contractions in my throat, the doc said the mid section of my esophageaus had a slightly low contraction but its still within the normal variation but he said its not normal some people get it when theyre older but can also be found in younger people, it could be nothing or could be a nerve disease but no evidence of that, then my barium swallow was alright and showed normal swallowing but showed pressure from my heart or left bronchus on my esophageus, even for that they couldnt explain it.

Went to heart specialist and she did an echo said my heart is in great shape. so again no diagnoses, they want me to do a sleep study now since they say maybe i have sleep apnea which might be causing some issues and low vitamin D levels, i will do that next month and will send me to see a rehab doctor who specializes in jaw function.

During this time i have lost almost 10kg in last few weeks because im eating much less, i feel food is not flowing down well and gets stuck also ive lost my appetite, but sometimes i eat normal as well when i get hungry, my tongue feels weak as well after eating but recovers, same issue when drinking cold things or feel worse in cold weather, i have twitching all over again now days and my left hand is really bothering me, my hand feels weak but when the doc checked he said i still have strength, getting slight tremors and fatigue all over it. my neck and back are also twitching and getting spasms.

I have always been scared of ALS / MND and unfortunately alot of the symptoms are same as in those diseases but i have done 4 EMG'S in the past 3 years, last was in may last year and it showed nothing, only some nerve entrapment in my left arm which is the same arm i am having trouble in now, also i have had scares with cancer as some of the symptoms point in that direction as well sometimes.

The doc doesnt seem to think i have a MND but he can never say 100% sure, he said i might have a diseases but its probably benign and not something that will kill me since im still alive for 3 years without any dramatic changes, its driven me crazy and i cant live life normally, my family life is getting affected, my wife is always stressed and tired of seeing me complaining and runnings to the docs and not getting answers, also we have a small baby and its hard as it is with some many responsibilities, mainly i feel like what if i get a fatal disease how will i take care of my family then.

I honestly don't know whats going on but maybe someone who has gone thru something similar might be able to give me some advice on how to deal with this.

P.S the docs have pretty much checked me for all Auto immune diseases, only one doc in a random hospital said after i had a Spine MRI 3 years ago that i might have Psoriatic Arthritis as it showed a little evidence but other doctors said its not consistant and doesn't prove it. No Lupus, no Evidence of MS or MG or anything. ???????

19-09-17, 14:06
Nothing you describe sounds like ALS/MND. Especially after 3 years.

Don't go down the rabbit hole so many of us have. I'm desperately trying not to fall back in myself.

19-09-17, 15:21
Yeah im trying my best to avoid that road but these weird symptoms keep dragging me back, how did you get out of it ?

19-09-17, 17:49
Yeah im trying my best to avoid that road but these weird symptoms keep dragging me back, how did you get out of it ?

The passage of time. Every so often I get retriggered like now, but time again is all it takes.

Changing your thought patterns and avoiding doom thinking helps a lot. I've been mostly successful but it's constant work.

20-09-17, 04:01
Yeah im trying but my left hand is giving me alot of problems right now, it actually feels weak, my arm, my hand and especially my index finger, completely drains out with use or over exerting my hand, constant twitch behind my elbow and all over the hand, have random twitches elsewhere too on the body but not as severe as the hand at this moment.

I wonder if it would take 3 years for a MND to actually pop on the hand which was even last EMG'd just over a year ago and had been emg'd 3 times before that as well, Hopefully not !

Also my lower Chin and Jaw, pain on the right side of my jaw, feel jerky and tight and weak at times especially today, however i can still blow out my cheeks, only the right side feels a bit hard to hold but still ok, tongue strength is good to and no wobbling or shaking of the tongue, those are mostly symptoms of bulbar so i guess im still in the clear ?

20-09-17, 11:16
Sounds like a lot of overthinking and anxiety. I know it's hard, and I'm as guilty as anyone, but stop focusing on your body sensations.

20-09-17, 13:32
What were ur symptoms like NJ

20-09-17, 13:37
I had muscle twitches and googled it. That was 17 years ago. Any other symptoms I had like weakness or clumsiness were all perceived and driven by anxiety.

I still have muscle twitches. Some days all over. Some days just in one hot spot.

Past few weeks my foot has twitched like crazy which has been my latest trigger. I've never had a hot spot like that go on longer than a week. This is going on 3 or 4 weeks now.

I try not to pay it any mind but it's not easy. Anxiety can be incredibly strong and overwhelming.

20-09-17, 15:42
Yeah I know how you feel, actually my brother who is a dentist got a twitch in his ring finger for almost a month !! He was convinced he had als but then after he had an EMg and got a all clear he is back to normal now and the twitching has subsided, my elbow has been twitching for almost 2 years on and off, these things happen I guess, the only thing bothering me now is the weakness or should I say perceived weakness in my left hand and arm, at times I even feel like I can't type well or hold a fork good anymore haha crazy how these things play with your mind