Smoking gun for ALS diagnosis?!

Searcher · 10-23-2008, 08:11 PM

A little over 2 years ago, while having some speech and swallowing problems and noticing what appeared to be some subtle changes (new erosion) on tongue, I asked the speech pathologist evaluating me to take some pictures of my tongue. I also took a few. Yesterday I looked at the pics online and the prints I had made up. It is very evident that there are new wavy, hilly areas on the top, anterior portion of the tongue that were not on those pictures. This, on top of a rheumatologist this week confirming that, indeed, one side of tongue has more grooving and less tissue and is somewhat weaker on that side. And this all fits with the recent difficulty in articulation and vocal fatigue and mildly increased difficulty eating. I occasionally feel twitches in tongue.

I realize I've had some speech, swallowing and other symptoms going back maybe 27 years, and specifically speech and swallowing difficulties going back at least 20 years. However, my speech never was this bad for this long a time and while these symptoms have fluctuated or remained essentially the same over many years, my tongue is clearly having progressive atrophy. Can anyone tell me any reason to think this is not evolving into ALS? What else could it be, regardless of past symptom history? Needless to say, after so many false alarms, so many times crying wolf, it now seems that the real thing is at hand and it is surreal and existentially shattering. My best hope, I feel, is that given my unusual history, the progression will be slow (in fact I think some of the tongue atrophy was present at least 16 months ago) or that maybe it is something else which is mimicing ALS, like an unusual form of MMN.

I don't have a neuro appt. for another 4 weeks but may see if I can get a speech pathologist consult before then. Does that make sense?

What do others do to deal with the anxiety? I'm upping klonopin (more times per day) and occasionally taking a beta blocker (though not supposed to take it every day due to too low a heart rate).

Thanks for any thoughts

Searcher

CindyM · 10-23-2008, 09:47 PM

I went through a period of only letting myself worry about my health during a set amount of time daily. I think It was for an hour late afternoons. I did all my research during that time, emailed people who were following my history, that kind of thing. The rest of the time I trained myself to live life as usual. It took about 3 weeks to get into the habit, but anytime I would find myself thinking of my health during "non-worry" time, I'd tell myself "It is not time to think about this right now."

Eventually, I was able to give up even that time I'd set aside. I have some more medical reports that I need to read and look into, from my latest tests last July. I still haven't found the time to think about them, LOL.

BethU · 10-23-2008, 09:55 PM

Hey ... don't start and stop beta blockers ... that can trigger a heart attack. Do you need them for b/p or heart disease? I wouldn't play around with those ... seriously.

Searcher · 10-23-2008, 11:17 PM

I take beta blockers in low dose for anxiety; like the kind of anxiety which I get having a neuro exam or worrying about new symptoms. Have asked and at least one doctor said I can take them intermittently. Some people take them just for special occasions, like making a speech.

Searcher

patricia1 · 10-24-2008, 12:16 PM

I wouldnt mess with beta blockers they shouldn be stopped without a doctor knowing.
You can get a heart attack.

Pat

Al · 10-24-2008, 01:47 PM

Popping beta blockers for anxiety sounds nuts to me. Do you go to the same doctor as Elvis did? Seriously though I'd be asking another doctor about this. A Cardiologist would be a good start.

AL.

Searcher · 10-24-2008, 09:31 PM

Quote:

Originally Posted by CindyM

I went through a period of only letting myself worry about my health during a set amount of time daily. I think It was for an hour late afternoons. I did all my research during that time, emailed people who were following my history, that kind of thing. The rest of the time I trained myself to live life as usual. It took about 3 weeks to get into the habit, but anytime I would find myself thinking of my health during "non-worry" time, I'd tell myself "It is not time to think about this right now."

Eventually, I was able to give up even that time I'd set aside. I have some more medical reports that I need to read and look into, from my latest tests last July. I still haven't found the time to think about them, LOL.

I think you have a good idea, to try to limit and manage the worry and attention to ALS. At least I think that until some new thing freaks me out and re-directs all my attention to this.

Searcher

Searcher · 10-24-2008, 09:35 PM

Quote:

Originally Posted by Al

Popping beta blockers for anxiety sounds nuts to me. Do you go to the same doctor as Elvis did? Seriously though I'd be asking another doctor about this. A Cardiologist would be a good start.

AL.

I've been prescribed beta blockers by more than one doctor. They have a long history in medicine for treating anxiety, such as social anxiety. I wish I could take them all the time, but Cardiologist says they drop my heart rate too low overnight. They have a direct blocking effect on the mechanism for anxiety and, for me, are wonderful for that purpose.

Searcher · 10-24-2008, 09:38 PM

I didn't post to start this thread to discuss beta blockers, but something far more significant to me; namely the likelihood that I have tongue atrophy and weakness and therefore ALS or something mimicking it.

Searcher

Al · 10-24-2008, 09:47 PM

As luck would have it I have a Cardio appointment in 3 weeks. I'll ask him about this. I did some research on this today on 2 med research ssites and found no mention of that use for beta blockers. Sorry to hijack your thread but as I said earlier, that sounds nuts to me. I've been taking B blockers 9 years after quad by-pass and if you read any of my posts I take medical information posted on this site seriously and will check out any claims that seem out of whack to me. Sorry if you think this is overkill but that's just the way I am.

AL.

BethU · 10-24-2008, 10:59 PM

Al and Pat and Searcher .... poking around about Beta Blockers, one article stated that they are prescribed for one-time, or occasional use, for anxiety, stage fright, panic attacks. Seems to me there are so many anxiety meds available, you wouldn't need a b/p or heart med for that, but some doctors prescribe them.

I was always told that interrupted use could cause heart attacks, and have been very careful with them. Mayby there are new guidelines.

Al · 10-24-2008, 11:39 PM

Really? I never found that article. Interesting. I never said I was right. I just said it didn't sound right. Guess I'll look deeper.

AL.

BethU · 10-25-2008, 11:26 AM

I have NO idea if the article was trustworthy. I'm still being very cautious with them.

Searcher · 10-25-2008, 01:02 PM

Quote:

Originally Posted by BethU

Al and Pat and Searcher .... poking around about Beta Blockers, one article stated that they are prescribed for one-time, or occasional use, for anxiety, stage fright, panic attacks. Seems to me there are so many anxiety meds available, you wouldn't need a b/p or heart med for that, but some doctors prescribe them.

I was always told that interrupted use could cause heart attacks, and have been very careful with them. Mayby there are new guidelines.

Maybe you were told this for people with definite, serious heart conditions, not just in general. All I can say is that I have had numerous doctors prescribe or agree with the prescription of beta blockers for anxiety - for occasional, anxiety-producing situations or even for chronic anxiety. It is true that it doesn't seem to be used as much in Psychiatry for chronic anxiety compared to other, newer, more expensive drugs, but I've had doctors tell me that it probably should be, since it has a direct blocking action on the physiology of anxiety (which is why it is used for high blood pressure). None of these doctors ever told me (nor have I ever heard or read) that taking a beta blocker occasionally is a risk for a heart attack, including my Cardiologist, who is considered one of the best on the east coast.

Searcher

Searcher · 10-25-2008, 01:08 PM

Quote:

Originally Posted by Al

As luck would have it I have a Cardio appointment in 3 weeks. I'll ask him about this. I did some research on this today on 2 med research ssites and found no mention of that use for beta blockers. Sorry to hijack your thread but as I said earlier, that sounds nuts to me. I've been taking B blockers 9 years after quad by-pass and if you read any of my posts I take medical information posted on this site seriously and will check out any claims that seem out of whack to me. Sorry if you think this is overkill but that's just the way I am.

AL.

AL,

I am not making any claims, unless you consider claiming that my doctors have prescribed and approved of taking beta blockers for anxiety. I'm not interested in convincing you about anything related to beta blockers and this is at best peripheral to this thread. So check out beta blockers and their history and use for anxiety all you want. It may sound nuts to you but I'm not sure why, as beta blockers have a direct blocking action on the physiological response that accompanies anxiety. I know from personal experience that they are wonderful for anxiety. If you think all of this is "nuts," fine, I really don't care. I'm not trying to push beta blockers for anxiety or any other reason.

Searcher