Status
Not open for further replies.

Ozcar

Member
Joined
Sep 22, 2014
Messages
10
Reason
Other
Country
IN
State
Maharashtra
City
Mumbai
Dear All,

It’s been a while and all of you have been in my prayers everyday.

Sorry that I have landed back here but really need your guidance regarding my recurring issues, as mentioned in my old post I have a list of various issues for past 3-4 years including twitching, weakness, numbness etc, I will not waste your time writing all that again, but as mentioned before I did various testing such as EMGs of limbs , MRIs etc and no diagnoses, lately right arm, hand and wrist very bad, feels weak, slow and twitching as well, neck and stomach cramps and spasms/twitching as well and pain in some area of body such as hips without any exercise.

Last September I developed some coughing and swallowing issues, I was investigated for that as mentioned in last post, they did barium x ray swallow study, manomatry , and PH24 monitor , everything was relatively ok but as expected I had acid reflux to some degree which I have had for many years, I also developed hoarseness during past months.

I went to many ENTs and they told me it looks good ok in terms of muscle function and vocal folds in throat but said vocal cord look swollen due to maybe coughing and acid reflux, medication for acid reflux doesn’t seem to work much either.

Anyways my swallowing didn’t get worse for few months and even stabilize for sometime but last 2 weeks very bad again, feel like food getting stuck in throat at every bite, need to take another bite or drink water to help, my weight also gone down more as I don’t eat as much , even with water sometimes feel I can drink it only very slow and like my throat muscle tense or hard and sensation that will
Choke if not careful, however honestly I never choke or gag when eating yet, just slight water or feel like food stuck in throat which causes me to clear throat, or sometimes after I finish meal coughing slightly, lastly feel like something stuck on back of my throat often.

Apart from that tongue also feels tired easily, discomfort in back of throat and soft palate also feels tired, voice gets tired as well if talking to much and feel breathless sometime, lung doctor already check me and said everything ok. No faculations of tongue also, have issue with clearing saliva sometime also like it stuck in throat especially when lay down. At night sometime wake up and need to clear throat or cough.

Last neurologist appointment was clear, follow up found no issues with strength or reflexes, doctor has not ordered new Emg almost 1 and half year.

Does it sound like any problem related to MND (ALS)? Last barium swallow was not modified barium which also makes person eat and drink but doctor said everything look ok so need to to do modified ? Also manomatry was normal so contraction is normal. However been 6 months since test? If I have any such issue will it obvious by now or worse ? Do I need to test again ?

Thanks and sorry for long message , thanks Im advance for any answers and sorry for my not so great English, hopefully you can understand
 
Ozcar,

I would seek a second gastroenterology opinion for more effective treatment for your reflux, evidently at least a partial cause of your swallowing difficulties. I would also ask about a sleep study to see if your breathing during sleep is OK.

Best,
Laurie
 
Hi Laurie,

Thanks a lot for writing back !! Really appreciate it.

I have been to 3 GI specialist already, just one last week as well, they all keep changing my proton Pump medications but after years of on an off acid reflux seems like it’s very hard to fix, showed them my results as well from previous test and they don’t want to repeat them.

Only last GI suggest doing a different kind of PH24 monitor test that only checks acid in throat to see if acid is indeed the cause of my swelling and redness there, he also said if I want I can do the Modified Barium swallow again but said it didn’t seem necessary.

As for Sleep study, the lung doctors I have been to suggested it but then after doing CT Scan of my face said septum deviated and he don’t want to do , I went to another doctor who say same and said I waste time and money to do? Said I should buy machine myself and try instead, now I push another doctor and they gave me days for almost 3 months as hospital sleep study lab to busy.

Anyways apart from these issues, should I be worried for ALS ? Is there anything I mentioned sound like issue ? Or need to go see some kind of specialist doctor ?

Thanks so much again
 
Make sure you have been tested for H. pylori? There are drugs beyond PPIs, and antibiotics if you are positive for it.

If a PAP machine is affordable there even for rental as a trial, I certainly think it'd be worth a try.
 
Dear Laurie,

Thanks again for your reply, really appreciate it.

I think they have checked me for H.pylori last year but I will ask them to check again.

Also I’m not sure if they have rental company for pap machine but I will check, it’s quite expensive in this part of world but will try my best to find one , maybe second hand if possible.

Lastly since I know all of you know ALS very well, am I in the wrong place ? I have already shared most of my medical history and test findings here before and also mentioned new symptoms in this thread, I don’t want to continue to bother you all as I know it’s quite bothersome when people ask questions non stop demanding answers from nice people like you.

Thanks again
 
Status
Not open for further replies.
Back
Top