tongue & legs

[leeroy]

Hi all,

First off, what a great community. I am a first time poster who feels like there is no hope.

I am 27, no family history. I have however recently found out that i carry the gene for Huntington's. Which has got me worried about everything.

Ok, i have clear fasciculations in my right leg (to the left of my shin bone) also see it in my left leg but not anything like my right leg.

I have for a few months now had what i thought was a lump on the right site of my tongue, my tongue is raised more on the right than it is the left, i have had antibiotics and it hasn't shifted it. Today i have been to see the doctor and he said sometimes the tongue may not be swollen, it may be shrunk, this put the frights in me, as i have been reading up on ALS through my legs. There is no weakness that i can tell in the tongue, i can move it freely.

I have attached a pic of what i mean by raised bit, please excuse the grizzly Adams look .

I have no weakness in my legs, or arms, left one burns a little when holding things like the paper up when reading, but i put that down to the fact i am right handed and its my weaker arm.

Left calf is bigger than the left, right forearm bigger than the right. Tongue gets tied sometimes when eating, again i think this is normal.

Thanks for taking the time to read.

All the best,
Lee

 

[leeroy]

Just to add, there is a little slurring of words, i think although my wife dosnt.

 

[BethU]

Hi, Lee ... I can see the raised part of your tongue, but (as a layman with no medical background) it doesn't look abnormal to me. I have no idea whether the left part is a little sunken, the right part is a little swollen, or it's all perfectly normal.

For what it's worth, this doesn't sound like the onset of bulbar ALS to me, because of the facics in your legs, and the fact that your wife doesn't detect any slurring in your speech. If you start to slur your words, the people around you will let you know immediately, usually with tasteless jokes about your being drunk, etc.

That's a tough break, having the Huntington's gene. I pray that it never developes.

 

[leeroy]

Hi Beth,

Unfortunately everyone with the Huntington's gene gets it at some point. There is hope though and realistic chances of a cure or something to slow it down. Then we all have god .

Huntington's is bad, but ALS makes it look like the flu. It truly breaks me reading stories of people suffering with this.

My tongue seems swollen to me, (the swelling looks to high to to be normal tongue position, and the lower part looks about right, i think ) i have been on the phone to the MND Association a number of times (lovely, helpful people) and they say i wouldn't be able to move my tongue if the muscle on the left had shrunk, and i would have a host of other symptoms.

My tongue is hanging over my back teeth, on the left side, which is the lower side, which tells me the swelling on the right is pushing it. The logical person in me sees all this, however the person i have become through Huntington's believes anything is possible.

I have no real problems with my mouth, no drooling, no weakness (unless i am eating something dry like cake and my tongue is working over time, but i guess this is normal.), i can move my tongue all over, ok with resistance.

With all the above, and the level of swelling on my tongue i guess that it is my anxiety driving me on, after all, if it was ALS i would surely have the above symptoms as i have had this for about 3 months.

Thanks for taking the time to reply to me Beth. It may turn out that i don't have ALS, probably will, but i will be sticking round here. This forum is helping me through a difficult time.

More comments welcome

All the best,
Lee

 

[polisaryo]

hi
Check youtube for tons of videos for weird tongues.

No way this is bulbar onset ALS. Muscle wasting on tongue occurs far after tongue fasics. Raised part of your tongue is not a symptom of ALS.

I have had visible tongue fasculations to my neuro in every exam for the past 3 years. But nothing more. I always claimed that my left arm and left leg is weaker (as a lot of right-handed people with anxiety do)

I have some advices for you. First of all stop checking your tongue on the mirror. Stop reading experiences of ALS patients and try to link it to your current situation.

And see an experienced neuro.

Best wishes

 

[leeroy]

Thanks for that polisaryo, in my head i have been thinking the raised part is the "normal" bit, and the lower bit has dropped, and is making it look raised. However looking at the pic, my tongue seems a good higher on the left, which makes me think its raised on the right.

It sure does look raised, but its the little gremlins in my head