Status
Not open for further replies.

megan80

Member
Joined
Dec 22, 2013
Messages
14
Reason
Learn about ALS
Country
AUS
State
NSW
City
Syd
H there,
I am after some information. I have recently posted on here prior to my neurology appointment. I am still no further clear into this jigsaw puzzle of symptoms as I was before.
My symptoms include the following

. Uvula is pointing upwards instead of hanging down it also deviates to the left or gets stuck on itself on the roof of mouth. Soft palate is normal and both sides raise symmetrically when I open my mouth. Uvula wiggles around and looks like it is weak though but does mostly return to the middle.
. Left arm from shoulders to the joints in my fingers get stiff and painful and feels much weaker than right arm.
. Body wide random fasiculations
. Some are thumpers that last all day and some are fleeting twitches.
I don't get them everyday.
. Neck feels strange and tight front under chin
Occasional difficulty chewing mostly sweets the, jaw and throat feels fatigued whilst eating sweets only
Left leg has a single vibrational feel in my knee internally, can't see it but can feel it.
Excess saliva on occasion and feel it sitting on corner of left mouth occasionally too. Not drooling but it is there and I notice it and suck it back etc.


I have seen a neurologist who undertook a emg and Ncs. Ncs was normal on leg and arm.
Emg was mildly abnormal and he stated at c4 and c5 junction. He was not concerned. He also stated he himself has had a worse emg than me. I don't know much more Thant this currently.
I saw and ENT who undertook full exam and examined my palate uvula etc.

Both doctors were not sure what may have caused the uvula to be this way it is and perhaps thought it was no related to the arm symptoms. .? But neurologist declared nerves may be involved. But if I had ALS I would be a third of my way into the Rest of my life as I have had symptoms for 6 months. .?

I had normal brain MRI and CSpine MRI. Any suggestions where to next? I appreciate any constructive advice anyone cod offer at this point i time. I am 33 year old female with young children so I am nervous about this obviously. I haven t had health concerns ever before until this. I don't suffer HA but now know all about it since I have decided maybe i do suffer it now. I can probably ignore all my symptoms except for the uvula as something clearly has happened to cause this change to my mouth.

Thanks anyway, that is long enough winded. :confused:
 
I've had those same symptoms for quite awhile....When I breathe my uvula curls up but goes back down....it looks longer too...something seems wrong...I'm not sure what it use to look like now..lol...I've had widespread muscle twitches along with joint pain going on 5 years if that helps any....I've never had it checked out yet because I'm chicken....sad but true..my fingers, elbows, ankles, and knees all hurt so who knows...you would think after 5 years of this happening it would be worst but who knows how it works...Also my tongue has had a burning feeling for 5 years too..I'm building up courage to go to the Dr
 
Thanks for your reply. I guess your uvula could be normal from you description just long. If your soft palate is sagging, ie. one side lower than the other or both sides not rising when you say Hahn, then y may have cause for concern. But I am no doctor so couldn't say for sure as I am in a similar situation. All my doctors have comment that unless the soft palate is sagging or not raising or if you have no gag reflex then not to worry too much. Easier said than done. :cry: but I would recommend your gp as they will be able to a) reassure you nothing is actually abnormal or b) refer you on for a doctor who can make sure it is nothing serious. There are many causes of our symptoms, but unfortunately for me the list is getting less and less. Goodluck with your journey and I hope it turns out you also have nothing to worry about as I am hoping for this this outcome too. .
 
Well let me know if you find out anything....I have pretty much the same symptoms as you....twitching for 5 years....The uvula think and the burning tongue are what makes me nervous....anyway good luck and I'm sure everything will turn out fine with you
 
I will keep y posted. I have found something called post viral vagal palsy which results in an abnormal uvula and reflux symptoms which is another thing I have issues with currently too. I will let you know if the doctor thinks this is anything that I may have suffered. It still doesn't explain the arm symptoms however. :(
 
Status
Not open for further replies.
Back
Top