Ozcar
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. ???????
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. ???????