Bulbar and other issues im experiencing and concerned about

[ozair]

Dear All,

In a nutshell i have been experiencing various issues such as twitching, muscle weakness, Mild to moderate pain every now and then since last august, went in for a check up and have seen various doctors, they did my first EMG and NCV back in September last year which was clear and then a follow up one in Jan this year which was clear as well, done various blood test and all came back normal expect a few inflammation markers.

Anyways as mentioned this has been going on since last year and seems like its been progressing slowly, my right side seems worse especially my ankle which gets tired and heavy every time i walk to much or over exert it, anyhow the pain issue that i have developed recently are throat problems, my throat never bothered me much before this, the only thing i noticed was that i slurred a bit sometimes but not to the point that it was noticeable to other all the time, now i have swallowing issues, seems like anything solid or dry is a bit hard to swallow, certain types of fruits, liquids don't seem that difficult as yet, i haven't chocked on it or have it go down the wrong way.

I went to see an ENT and a Rehab doctor recently and both didn't know what was causing it, the only thing they said was it could be GERD, Acid reflux because my throat seemed a bit irritated but that still didn't explain why my jaw seems weaker, for that they said it might be TMJ but they don't know for sure, everytime i eat something a bit hard it seems like my jaw gets heavy and i cant chew it that well. Its brought me to the point that i haven't been eating much and only eat things like soft rice and gravy and it seems like my weight is starting to come down, im a big guy so its good in a way but loosing weight due to the wrong reasons is not my idea of getting in shape, my right hand and foot seem weaker as well and ive been getting this weird twitching especially around my foot and thigh on the right side which vibrates a bit or are small enough to not be seen unless make if i looked extremely close maybe also its weird that the same side of my body seems smaller compared to the left side including my Bicep and Leg/Thigh, im right handed which makes it rather odd, i also feel like my left eye lid is weaker and twitches alot facial muscles seem tight and tired, my tongue seems alright, i haven't noticed any major twitching, can still move it around, push out my cheeks and blow my check but not letting any air out of my lips , my only issue is that i live in a place where the doctors might not be as qualified as the west and might not know enough to know if something bad is really starting or going on, they base everything on my EMG and NCV ( which didn't cover my throat or tongue, only my limbs on both sides of my body) i would appreciate if anyone who has such issues could let me know if its something i need to be concerned about, because i would maybe have to really try hard to find the right doctor to help me or go abroad if necessary.

Im sorry for troubling all of you here, any answers would be much appreciate

 

[Dusty7]

What you describe does not sould like ALS to me
twitching is not diagnostic of ALS
muscle weakness needs to be assessed by a neuro (I assume they found no clinical weakness during the clinical when they did the 2 EMGs)
Mild to moderate pain points away from ALS
2 clean EMGs says you don't have ALS
anything solid or dry is a bit hard to swallow--in ALS liquids are hard to swallow
muscle atrophy needs to be assessed by a neuro (I assume they found no atrophy during the clinical when they did the 2 EMGs)

 

[ozair]

Thanks for your reply Dusty, i was wondering tho, in regards to issues with Liquids, how exactly would it present itself ? just difficulty swallowing? or the water would choke you ? also in regards to chewing, would it present itself as the jaw being extremely weak and a person would not even be able to open their mouth wide and keep it open for more than a few seconds or just experience weakness when chewing certain types of food? in my case my jaw starts to slow down and get heavy as i eat, especially solids, but with things like rice, noodles etc it doesn't seem to cause much issues, feels like alot of pressure on the jaw, a little pain as well sometimes, my right arm and hand feel very heavy and strained as well, even writing right now is making my right hand tired, can feel small twitches inside sometimes, my right leg and thigh are heavy and hurting as well, twitching at certain points persistently. I wish i could figure this out, its really pulling me down

 

[affected]

Hi ozair,

I've read your posts very carefully.

My husband was bulbar onset and it was nothing like you are describing, which is great news for you. I won't describe his presenting symptoms it will take too long but you should please read the sticky at the top when you click on Do I Have ALS? Is This ALS?

That's our official position. We won't argue around it because we know ALS really well, but we are not doctors so can't tell what is wrong with you. Please keep working with your doctors and let them do their job, change doctors if you feel the need.

All the best, you can leave here now knowing that you can lay this fear to rest.

 

[ECpara]

My husband had had bulbar onset ALS for 3+ years now. Bulbar onset ALS starts in the tongue, not the jaw. The tongue becomes paralyzed, causing slurred speech and difficulty swallowing. What you describe is not the same. Also heaviness, pain, straining, tiredness, hurting are all sensory.....not ALS. (Incidentally, my husband's EMG was done on his extremities, not the bulbar region. It came back positive for ALS). I could go on, nothing you describe in your posts sounds like ALS. Put your fears to rest and good luck!