Tongue issues

[chloe90]

Good evening to all ALS warriors. I hope your all well as can be. As I seen you get alot of people on here that come on with symptoms ect. I cant imagine how frustrating it is, especially when yourselves are going through this hard time. But I've only come on, not to aggravate you, it's due to constantly being dismissed by my g.p who can't even be bothered to do anything whilst I'm on the waiting list for speech & language.

I had an operation back in September and had a mastoidectomy/tympanoplasty. All was well apart from a bad throat and cough. Once that went away a month later I woke up one day and my tongue was like an achy pain, very dull at first like how your legs feel after exercising, I thought oh maybe it will go away. 2months on today it got worse, It twitches frequently, feels like it's moving constantly but not at rest apart from with my heart rhythm.

Now it's one side of my tongue where its like a sharp stabbing stingy pain, more twitching on one side. Cramps and twitches doing anything strenuous. Also noticed if I tried to close my move together it feels very tremors but not visible. I've notice slight deviation to my right side front of tongue is very thin now. I do have a scalloped tongue. It's annoying so much I'd love to remove it at times. I have seen a slight restriction on some movements but nothing major, I do slur but this has been happening for 2years hence the referal to speech & language.

Could someone maybe give me some Intel. As I'm at my wits end. Amd yes it gives us health anxiety. I only check my tongue when it's sore but I never have sores or any inflammation. The twitching does happen further down my tongue and always mostly one side. It does do the odd few years when mouth is closed, all this is very noticeable. Do I fit the category of als. Also any recommendations I can maybe approach my gp to actually take me seriously. This also affects me during the night. It's an irritating feeling constantly. Only once I had twitching all night in my tongue.

 

[lgelb]

No, this does not sound like ALS at all. But perhaps in consultation with your SLP, I would book a return visit with the surgeon to rule out nerve root damage and infection.

 

[chloe90]

Thank you for your feed back. I have recently contacted my E.N.T for an earlier appointment. I wasn't sure if it was possible to display symptoms of nerve damage a month post-op. As I know the hypoglossal nerve is a potential risk with the kind of operation they did. It's just rare. But I appreciate your feedback. Thanks so much again.

 

[chloe90]

I know I've been on recently and was assured my symptoms do not seem to be als related. But my GP has never dealt with these kind of symptoms before. They don't think it's related to my operation as.symptoms started 1month post op. And it worries me as if this is something they've not dealt with is it possible it could be bulbar due to the bulbar side of symptoms. Tongue is still slowly deviating more to the affected side. Still cramping and alot of jerking movements from tongue even at rest in my mouth. Constant aching and stabbing burning feeling all over tongue not just one side but all over and to back of tongue. Swallowing is feeling resistant also as it feels like how a sore throat would when swollen but isn't and isn't painful like a sore throat. Tongues becoming stiffer. Electric shock symptoms still going on. Also along with tongue issues I noticed several indents in leg and went to doctor and was told no sign of lipodema but fat deposits breaking down but looks atrophied. Leg is much thinner than other with random indents. Also weakness in that leg but not sure if it's from past injury of ankle what was untreated couple years ago. I'm even more worried about bulbar als. As GP has no idea. Bloodwork is fine apart from folic acid /iron deficiency. If they don't know what could be it makes me wonder more. I've worked in healthcare and seen too much also. And i don't want to annoy anyone what so ever. But out of nowhere I end up with bulbar symptoms. And you gues are probably more informal than the GP at the moment. They also don't think it's related to my mastoidectomy/tympanoplasty surgery as symptoms started 1 month post op.

 

[chloe90]

Hello everyone. Some may remember me from a past a little while back. Since previously on my last post about my tongue issues, my GP is not familiar with these symptoms and referred me back to my e.n.t. who don't think it's related to my previous surgery. I also forgot to mention last time I have 1 arm and 1 leg opposite sides that are thinner than the other. Indentations in different areas of them. My left hand is becoming thinner and looks indented in places. Also right side of face is.thinner. right leg has always been week since untreated injury to ankle. But things are worsening and will not refer me to neurologist as they aren't sure themselves. So I'm stuck. And I'm petrified of als. All bloodworm is fine just low folic acid and iron. Mri scan done Al.ost 2years ago and was fine. I have pain and tenderness in my limbs constantly the ones affected.

 

[lgelb]

I can't relate this rapid and widespread thinning that you mention to ALS at all.

If the ENT is not seeing anything remarkable, that's very good news, considering the issues you're citing and what we know about neuromuscular disease. For example, there does not seem to be a loss of function commensurate to the thinning, which would not be the case with motor neuron disease.

So from the systemic standpoint, I wonder if the folic acid/Fe deficiencies could be keeping company with other deficiencies as not yet appreciated. So I would certainly recommend that you consider consulting with a dietician who has seen more of what could be underlying what in terms of your overall health. Could be some kind of malabsorption syndrome, adult-onset food allergy, etc.

The really good news -- you're still in the wrong place here.

 

[chloe90]

Well I really appreciate your feedback and your insight. Theses days gp's are just very dismissive. The reason of panic as it all started in my tongue. And it's something I have to deal with all day everyday. And today I've got fasciculations in my tongue but on opposite side. So it's frightening. And the worst part is coming to you guys who are actually going through this awful disease. So I'm sorry if I've made anyone feel upset. I don't think it helps as I'm a single mum to a 5yr old and we don't have family. So sy.ptoms like this do make you question the ifs and what's when the GP just kind of neglects you. But I will seek more help from what you've mentioned. Very very much appreciated. I hope you all have a lovely Christmas and new year. And I wish you all well.

 

[lgelb]

Glad to hear it; closing thread.