Strange Tongue Problem

[hc1]

Hi all,  it's been a while since I posted as I am still in limbo land.  I have been steadily going down hill since this summer and I am now having some scary symptoms.  Just was wondering your thoughts.  

I had a Tdap vaccine in June.  2 weeks later I started having some tingling in both legs from the knees down and painful feet.  I seen my neuro and he said it was unrelated, ordered a lumbar MRI and sent me on my way.  I had the MRI which showed some stenosis, but pretty good for a 41 year old.

Since about late August, early September I have been having great fatigue and perceived muscle weakness.  I get tired holding my hands up to put my hair in a barrette.  I have had to stop exercising because after I worked out on Monday, I was still sore and tired on Friday.  I had been exercising 3-4 times a week prior to this.  

The first week of October I started having a hoarsness to my voice after I talked for a bit.  I thought I was coming down with a cold.  Well that did not materialize and 2 weeks after that started I suddenly felt like my tongue was having issues.  I have pain and a burning feeling on both sides of my tongue.  It feels swollen and therefore is not working correctly to push food and drink down my throat.  I am not choking, but it takes effort to swallow and sometimes it feels like it is going up the back of my nasal cavity instead of down my throat.  I have some issues with talking, but not slurring, more like stumbling over words.  This has been waxing and waning for over a month now but has never resolved 100%.

I went to an ENT who said I had irritation in my throat from GERD.  I then had a swallowing test which was normal.  I saw my neuro again because I had concerns of ALS, but he said I don't have that and is insisting I finally get an LP because he feels it may finally be MS, especially since I have been having issues since the Tdap.    I did press for an EMG which I have next week and also I'm seeing a speech pathologist who can maybe figure out what is going on with my tongue.   All blood tests including vitamins, myasthenia, ANA, lyme are negative.

I have not been able to find anyone describe the tongue issues I'm having on really any message board.  It is so strange.  Thanks for any thoughts or insight you may have.. you guys always have good suggestions/comments.

[jensequitur]

Not to make things more confusing, but I have problems with swallowing, aspiration, and dysphagia. Things get confused back there when I swallow. I have to tuck my chin to my chest when I swallow, and sometimes things 'lock up' back there. I have to distract myself so that my natural swallowing reflex will activate. I can aspirate accidentally and a few drops of whatever it is I'm drinking will end up in my windpipe.

This has been an on-off problem since my diagnosis. I'm pretty sure it's because of the MS. I don't have neuropathic pain in my tongue, but it's numb in places.

[hc1]

Hi JJ.  Thanks for your thoughtful reply.  Unfortunately this tongue thing has only been for the last 2 months, and something I've never had before.  I will keep rolling through this and let you know what happens after my January appointments.   Thanks again for your thoughts, I appreciate it!

[supermum_ms]

Hey hc

I think it would probably be a good idea, to keep reminding your self that your assessment found no clinical sign of abnormality "I saw a speech pathologist who said I have a normal swallow study, good tongue strength and motion..."

Your concerns of this being something more and a sign of  ALS or MS related is extremely unlikely, if this was something more serious, there really would be clinical evidence of it......  

"CLINICAL PRESENTATION
Dysarthria and dysphagia are the most common bulbar symptoms in ALS. Studies have reported dysarthria in 93%, dysphagia in 86% and tongue fasciculations in 64% of patients with ALS who have bulbar symptoms."
http://www.medscape.org/viewarticle/575966_3

I'd been told more than once i might have motor neuron disease (ALS), If you heard me talking which is worse during a relapse, you'd probably think ALS. Communication along with everything else is a worsening problem and I often sound just like someone with late stage ALS but if that 'had' been remotely true, i would be long gone because of the 2-5 year average life span. The life statistics is why i'm mentioning this, your saying it's been 8 years and IF ALS had been possible, you either wouldn't be here or you'd be living a totally different life!

That report explains bulbar sx's in more detail but i honestly think IF your anxiety does effect your sx's like you mentioned before, it would probably be better for you overall, if you stop looking beyond what your dr's think it actually is and find a way to be reassured by your lack of clinical evidence of it being something more....  

Cheers........JJ  

[karryon55]

I had a Speech Pathology assessment done to check for dysphagia (swallowing) which found some coordination problems in my oral structures which can get much worse in heat & fatigue situations as well as a very dry mouth. I was given some tips like Supraglottic Swallow, extra sauce and gravy, tin tucks when drinking, monitoring for aspiration etc which are all helpful tools to get me by from day to day.

I was also told that my GERD can cause post nasal drip and the coughing that I do a lot of. I have had that feeling of something stuck in the back of my throat for many many years. I had previously had an exacerbation where my swallowing was impacted more but things seemed to settle over time and I now only have mild dysphagia.

I honestly believe that if you had the same testing then then something that would suggest ALS would have shown up. I am not sure why you would feel you have ALS but if this is driving you into an anxious state then you must put all the cards on the table and tell your doctors your concerns. You mentioned your tongue being swollen which is not something that occurs in MS. I have never heard of a tongue EMG but get it done if this reassures you about ALS but if it comes back negative will this actually stop you worrying about ALS?

I'm not suggesting that what you are feeling with your swallowing is not real and you do need to find out what's going on for you but to jump to the conclusion it's possibly ALS seems like jumping to the worst case scenario. Perhaps I've missed something important that you've said here...I don't know but when I saw your post what struck me was an awful lot of anxiety about something that is probably never going to happen to you.

Take Care and be kind to yourself,

Karry.

[hc1]

Thanks Alex for your reply.  I am about at the end of my rope and am just trying to take it one day at a time.   I wake up every day hoping things will work right, but they don't.  I have an MRI scheduled at the end of this month, a neuro visit in early January, and a GI follow up in late January.  

I think since my neuro has been following my crazy symptoms for over 8 years, he is thinking he is finally putting it all together with this latest episode starting with tingling, extreme fatigue, and now the swallowing issue.  It just seems a long time to be having the same flare- July thru now... ????  but what do I know??  ...

I will think about the steroids.  And if things do not improve by my next appointment I'm going to do what I have to in order to get a tongue EMG so I can stop/keep worrying about ALS.

Thanks again..
hc

[HVAC]

I would try the steroids they work on inflammation. I could not be diagnosed with MS until I had a LP. Whatever is going on is real. It does not scream MS but MS can be different for each person. If you were having swallowing problems with ALS you would be probably be a quaropelegic so I would not worry about that.

Sometimes people have several illnesses at once. I have asthma, allergies, three bad disks, thyroid, migraines,deafness, MS, and cancer. Each causes different symptoms.

I have not had the tongue thing. My issues are unilateral mostly on my left side. None of my issues is symetricaL. My MS makes me bite down all the time. I only bite the left side of my mouth and tongue. My left side is week.

I do not know what doctor you should see. May be a gastrointerologist? It might take several different doctors. If you are having swallowing issues make sure you take small bites and drink sips of water between bites.You might want to elevate your head when you sleep.

Whatever is going on is real. Our medical system is so specialized it is hard to be diagnosed. We have a good Intergrated Medicine Clinic at Duke. Sometimes they can find things a regular doctor can't because they look at the whole self instead of the doctor's specialty of part or system of the body.

I have a good GP she found my thyroid, MS, and cancer. It still took me years for neurologists to diagnose the MS. I had clear neurological problems from the age of 2.

Alex

[hc1]

So I am continuing to have swallowing problems.  It has been 2 months and I'm freaking out about now.  I had talked to my neuro who did an emg and nerve conduction on my arm and leg.  When I pressed to have it the emg done on my tongue he said he didn't want to because he didn't think it was necessary.  I don't feel any better about things after talking to him.

I saw a speech pathologist who said I have a normal swallow study, good tongue strength and motion but may be having some slight palate weakness.  I left with some exercises but little comfort.

I am at a point where I can hardly drink water.   I think half of it goes into the back of my nasal cavity.  Then I have post nasal drip for a while afterwards.  My neuro did give me a script for steroids thinking it may help.  I haven't picked it up yet and am unsure of whether to try it.  

I really doubt this is anxiety at this point.  Any other thoughts are appreciated.

[hc1]

Thanks for your thoughts JJ.  I hope it is something as benign as GERD or anxiety.  I will update after my appointments next week!

[supermum_ms]

Hey there,

I still don't believe what your experiencing is going to turn out to be MS (or ALS), because collectively what you experience is not typical. You may find your psychological issues are a contributing factor, eg MH medication, increased stress or anxiety etc

It actually does sound like acid reflux ( GERD ) to me and it is a very common issue but it could also be from a vit deficientcy, anaemia, oral herpes, oral or sinus infection, allergy, dental, thrush etc etc If you look online you'll see a lot of people talking about (same or similar sx's to your) in relation to GERD, anxiety and acid reflux that you might find informative to read....

Cheers..........JJ  

[hc1]

I also forgot to add that my Vitamin D was just slightly low at 27 (normal is 30).  All other labs normal.

And I have been having random muscle twitching since the hoarsness started in early October, but they have lessened somewhat since adding more milk to my diet.