Is this Bulbar symptoms

[tee5]

Hello All,
The most recent issues - my left cheek feels numb more every day along with my tongue and mouth tingling and I having some issue with swallowing saliva and it comes and goes. No other swallowing issues. NO issues with muscle strength and I work out on a regular basis.

History-1/01 numbness in my left pinky/hand and cheek comes and goes. 1/03 left foot is numb only when I ran eventually it would happen without running and had tingling in lower legs which came and went. Had some tingling in ears, top of head and etc that come and go. 1/04 - MRI, mylogram, NCV and EMG on legs. 10/07 Left arm ached painfully, twitching started in Right calf 11/07, PT was done on my neck 12/07, around that time my hands started to tingle and my right thumb from the first knuckle to wrist started to hurt and now is in same spot on left hand, comes and goes but it is getting worse. Both arms started to really hurt 4/08 but since twitching was only in my calves NCV and EMG were ran 6/08, normal results although a slight drop from previous NCV and EMG. Neuro mentioned possible Neuropathy. Tongue tingling started 5/08 along with eye twitching and calves started to ache but felt better with stretch, camping/spasm in feet and this has gone away since taking Magnesium supplement. Started Lyrica 6/08 now at 300 MG and that has helped arms a lot, took myself off for a few days to see if it was helping and aching and crawly skin returned. I am back on Lyrica and doing fine. 6/08 Left cheek numbness makes me feel as if I am drooling but I don't think so and noted some tingling inside my mouth for the first time. 7/08 twitching is body wide but comes and goes and had NCV and EMG on both arms, normal. Neuro thinks maybe Fibromyalgia or BFS w/pain.

What does this sound like? ALS? Any ideas on what I should ask Neuro on my next visit. I am having a neck/head MRI done on 9/8. The Swallowing issue really has me concerned.

 

[BobH980]

If you have Uncles on your Mother's side of the family tree with similar symptoms tell your neurologist.

 

[tee5]

Hello Bob, thanks for the reply. I have been impressed by the compassion on this forum. Most of you all are facing something that I cannot imagine. I would like to hear from others on their thoughts. My involuntary swallowing of saliva appears to have stopped and my tongue is constantly tingling to numb. Read the history if you want but my most recent symptoms, the swallowing and tongue along with questions for the Neuro are the most pressing. thanks in advance for your advice and support

 

[BethU]

Hi, Tee ...

This is just my experience. Don't know if it will help you. I was diagnosed with bulbar-onset ALS on May 5, 2008, after 2+ years of symptoms.

I've never experienced any tingling or numbness in my tongue, or numbness in my cheeks. I do have tiny fasics all over the surface of my tongue 24/7, but I cannot feel them. Although neither of my cheeks are numb, the left side of my face is stiff and I can't smile on that side. My tongue is also weak in moving toward the left side ... for instance, I cannot touch my tongue to that cheek.

My biggest bulbar problem is "disarthria" -- the speech impediment that ALS patients get. This is caused by the weakening of the tongue and lips. My tongue moves very slowly ... like a snail! ... and I cannot pronounce any consonants clearly. I have also lost "lip seal" ... the ability to close my mouth firmly. Everything I put in my mouth immediately dribbles out again ... solid food, liquids, whatever. I usually clamp a towel over my mouth when I eat, to catch the "outflow" (just made that word up). There are other techniques to achieve a lip seal when you're eating or drinking, too.

I have swallowing issues, but they sound the reverse of yours. I understand that normally, we all swallow continuously without thinking about it. In ALS, that automatic function is lost, and so saliva tends to build up in the mouth, where it can thicken and become really annoying. The other swallowing issue with bulbar onset is that aspiration becomes a danger ... that is, saliva (or other stuff) gets into the lungs instead of the stomach, so it creates the danger of both choking and pneumonia.

I always associate tingling with neuropathy, as my husband has had that kind of symptom for many years, and he most certainly does not have ALS! But I am no neuro.

This may be more info than you wanted , and may not help, but I thought I'd give you one example of bulbar-onset symptoms. Remember: EVERY ALS PATIENT IS DIFFERENT ! Every "case" is different. "There are a million stories in the ALS city. This has been one of them," to quote an old-timey TV show.

My #1 question for a neurologist would be "What else could it be?"

Good luck! I'm hoping you don't identify with my symptoms!
BethU

 

[tee5]

Hello Beth, I am truly sorry to hear about your situation and with all of this you take the time to write. I do have a Neuro visit soon and will update after that so thanks for the advice on questions. You may and others on this forum understand this as the reply is very, very much appreciated. I will keep you in my prayers.

 

[tee5]

A thought to all though. Is there any sort of vitamin/herbal changes I could make to delay/avoid this disease. I have read much info on this forum but did not make notes of specifics. It is understood of course there are not guarantees but willing to experiment.

 

[CB1977]

Beth- What are the symptoms of aspiration? Is there a test you can have to see if this is happening? Is this something that would occur at early onset or down the road? One of my symptoms has been a 4 week nagging cough that is caused by the feeling that phlem is building up in my chest/throat but I never actually cough anything up? I have no speech issues but also bad pains in my neck muslces.

Tee5- I might be mistaken but wouldnt all of the normal EMG's rule out ALS? I am just wondereing because I am getting one in a week and if it was normal I was hoping that would rule out ALS.

Thanks- CB in Ohio

 

[BethU]

Hi, CB ... Usually aspiration is something that happens down the road. I don't think it's an early symptom. But it is a danger with bulbar involvement.

The good news is that they do have tests that can determine if this is happening. One is called the barium swallow test, and you drink a thick, terrible-tasting liquid, and they x-ray its progress down your throat all the way to your stomach. They can tell immediately if you are aspirating anything into your lungs.

Usually, if you aspirate something into your lungs, you feel that something "has gone down the wrong way," and cough till you get it out. When ALS progresses ... this is NOT an early symptom ... the muscles supporting your lungs weaken, and it may not be possible to cough hard enough to dislodge it. (They have "cough assist" gizmos now to help when people reach that stage. They beef up your cough.)

If someone has ALS, their neuros will do lung function tests on a regular basis (about every 3 months) to make sure the lungs are still able to function well. These are easy tests and only take a few minutes, usually.

About your nagging, unproductive cough: That sounds to me like a nervous (anxiety) symptom, but I'd mention it to your doctor.

Pains in the neck and shoulders can often be anxiety, too ... in fact, I think those are the first muscles we tighten when we're worried. We subconsciously hunch our shoulders a bit. I don't think they are a symptom of ALS.

I can't remember when you're going to the neurologist, but I think it was soon. Good luck on the visit! Hope you get good news. The odds are very much in your favor.

BethU

 

[rose]

CB: about aspiration

CB I did have aspiration that developed into pneumonia a few months ago. It didn't feel like a cough and phlegm sensation really. (Also, some people can even aspirate without knowing it), For me, I felt just like what I did, "breathed" water down into my lungs, like probably everyone has done at one point in their lives due to laughing or whatever at the wrong moment. However as the days progressed I started feeling achy all over like I had the flu, and when I eventually started running a fever of about 102.5..... :arrow: :idea: :!: and shortness of breath, I finally clued myself in that I might actually be sick, went to the dr and found out this was what it was. So, if you were aspirating, you would be getting follow up symptoms ~ such as a fever, (silly me) it wouldn't just remain the cough and phlegm that won't come up feeling.

To answer your other question, yes, a normal EMG will rule out ALS. EMGs however don't measure upper motor neuron activity though, just lower. (but to have ALS one has to have both)

That sticky at the top of the page with information on EMGs is very helpful, if you follow the link to the site where various scenarios and results are discussed.

take care,

 

[awieleba]

Rose~

if you had pneumoonia from aspiration would they know it the hosp? I only ask because a few months ago I was hospitalized with it. I just thought I was sick, 102 fever, chills and aches. Then one morning I could not move or breath w/o a stabbing breath! Turned out to pleursy also. While in there I had chest x-rays and a million blood tests. Would they have been able to tell the difference b/w aspiration and normal? Ithink I had just a normal one, I had been in the hosp with my baby and felt sick after leaving and there were aton of sick babies there. just wondering...........

 

[rose]

April

~ If they took a culture they could tell what type of pneumonia it is. When I had it, my doctor didn't want to wait for a culture to get me started on antibiotics, so she found one that would work on both "walking" pneumonia as well as aspiration. As I hadn't had any sort of respiratory infection beforehand, she said she was about 95% sure it was the aspiration type but didn't want to take the chance. About 5 hours after taking the very first dose my fever was gone and I no longer ached. It took longer, of course, to get rid of the cough.

Looking back, I should have realized sooner that I was sick, but I had just (finally) gotten off of all of the prednisone, which I'd taken for so many months, and I just assumed I was aching because of my "middle aged" arthritis! I even was remarking to people that I'd forgotten how badly my joints used to ache before the prednisone LOL. The cough I just ignored....

My doctor attributed its happening to the slippage problem I have in the larynx. Liquids can move from my mouth down my throat without me actually swallowing, its not severe, but enough to cause an occasional problem.

That's what gets me ~ I don't feel like any of my problem areas with this stupid disease are that advanced, and there are many on this forum that have a lot more swallowing issues than I do. But the slippage thing is tricky. Its a reason I'm actually thankful I have dry mouth :-D

Re: Your pneumonia, a little coincidence ~ I had pneumonia when I had my daughter. I'd had the flu first though. So, I'm wearing one of those masks in all of the photos I have of me holding her in the hospital.... and (I will never forget this) I was nursing her, and was bleeding just a little, and this really mean nurse snarls at me, "you're going to make her sick, you know!" So disapproving, and I never knew which affliction of mine she was referring to :evil: ~ and no, I didn't, she was just fine!

 

[CB1977]

Thank-You everyone for the replies! I had an EMG today, it came out normal. It took about and hour, the person who did it is a nerologist with at least 10 years expericence. He did it on my right hand front and back of thumb area, my tricep, my bicep, my neck (left side) and my toung (from underneath my chin?). I dont have the official report yet but he said that everything looked normal. He said I had a few pops in my tri but that was nothing worth being worried about. I asked him specifically about ALS and Bulbar ALS and he said he didnt think I had anything to worry about at all because the MRI on my neck muscles would have shown atrophy, the blood test would show my muscle enzymes (CK or CV..i cant remember) as being well over 400 (mine were 139) and the EMG would have showed something. I am going to get a second opinion just to be sure but I will probably pursue this issue with a auto-immune specialist going forward.

CB in Ohio

 

[Al]

That's good news CB. Thanks for letting us know.

AL.

 

[tee5]

CB, congratulations you have very good news and thanks to you all, what a great deal of good info. I did not know that MRI of the neck would show atrophy! I had a head and neck MRI and they phoned to say both were normal. CB, in answer to your question, YES I would think EMG would rule it out but I only had that done on legs and arms and wonder unless it is done on the tongue that you can rule out bulbar. I could be wrong though! I have tongue tingling but no loss of tongue strength. The swallowing issues at this time are only with regard to saliva. Swallowing might be a reaction to Lyrica 300MG as I have read it sometimes can cause this and it seems to have started shortly after starting Lyrica. I am reducing my dose to see if it improves. I am still VERY VERY concerned about Swallowing. I am seeing Neuro on Tuesday for an office visit.

Can someone let me know if it is CV or CK for blood enzyme? Any addl comments are very much appreciated.

 

[tee5]

Rose or anyone, where is the sticky referred to. I have looked all over the place.
*****
That sticky at the top of the page with information on EMGs is very helpful, if you follow the link to the site where various scenarios and results are discussed.