Medications?

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Second Opinion

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I am posting in this forum, as I do not go for my second opinion, until July 11th (John Hopkins).

My symptoms came on quite suddenly, and were even dismissed by my first neuro (two clean emg's, including one (April) of the tongue, in both March and April).
FInally, was seen by a thorough competent neuro.
Along with the fear of fast progression, I am worried about medications.
I was taking a multitude of vitamins and supplements, after reading they could potentially be good for ALS patients, but you can never be too sure, when it comes to google. Is it safe to take these?
I am also taking Xanax, to relieve the anxiety associated with all of this. Is this safe?

I started with body-wide fascicualtions in February, and by April have had change in speech, voice, swallowing, chewing, and trouble with air going through my nose when I speak, which burns?
I also have twitches in my face and lips.
My tongue is in a constant state of feeling as if it were burnt- normal!?
I have constant catarrh.
I wake up with a sore jaw and teeth, so I assume I am grinding them.
I am startled very easily, and cry over everything.
My swallow study was only mildly abnormal, although it feels horrendous, mostly with liquids. I often feel as if they are going to come through my nose, but thankfully have not.
My speech study was also only mildy abnormal.
My swallow study also revealed the base of my tongue was noted to have moderate erythema and edematous? Common?
Yet the rest of my tongue is pale in color.
My vocal folds were also noted as erthemya? Common?
My ears pop with every swallow, and after drinking, my throat gurgles.

I know no one can predict progression, but I am so fearful at the rate all of this came on, I will not be here much longer.
I read stories of others having one symptom for over a year, then another.
Mine came out of nowhere and came on strong. Is this normal?
I do not want take any medications that may contribute to progression (is that even possible?).
I am extremely stressed, which I am sure that is to be expected as well, but I want to do everything I can to ensure I do not contribute to a faster progression. Is stress a factor?

I feel terribly alone, and so lost.
My husband is in denial, and believes there is a mistake. Although he is supportive, he would prefer to pretend like it is not happening, and it makes for a very lonely world.
How do I move on and enjoy the moments, when I am stuck on the thought of possibly not having very many left.
Is there really life after diagnosis?

-Leslie
 
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affected

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Hi, I'm sorry about what you are going through.
You haven't been diagnosed with anything as yet have you?
 

Second Opinion

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Hi, Tillie-
My 'new' neuro has given a probable diagnosis based on the clincial and my symptoms.
She did not feel repeating the EMG was appropriate as I had just had two- March and April, and John Hopkins will do their own next month, and I will then be three full months since my prior.
 

affected

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Thanks for clarifying that Leslie. May I ask - was the 'new' neuro a neuromuscular specialist? I ask because it is very strange to say probably ALS when 2 EMG show nothing. Or did they say probable MND of some kind? That could mean something quite different.
Let us know how you go with John Hopkins, I presume it is a neuromuscular specialist there that you will see?
In the meantime, try and put all you have into life now, your health and your partner. Regardless of what kind of diagnosis you do end up with, you won't get this month of your life back, so make it count. You might feel stuck in this, but you might be future worrying about something that will be proved not to be. That is worse than being in denial for another month.

Red colourations and swelling in the throat and tongue are not at all any part of ALS.

There is life after diagnosis, please remember you are asking that of the diagnosed terminally ill.
 

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Leslie, you have had two clean EMGs, including of your tongue, which you believe to have significant deficits, and since the issues you describe do not resemble any onset of which I am aware, I find it hard to believe that a competent neurologist gave you a definitive diagnosis of ALS. That would contravene the diagnostic guidelines that clinicians worldwide follow.

Please refrain from posting until you have an update from that appointment; I am closing this thread pending your followup.

As to your questions:

Xanax is an addictive drug with a variety of side effects, could worsen any problem with swallowing or speech, and if you have ongoing anxiety, an SSRI or SNRI is usually the first line rx. If this is situational and unusual, living your best life and solidifying your social connections can often take the place of potentially harmful drugs.

As for supplements/vitamins, randomly putting substances in your body, especially in advance of a diagnosis and clinical consultation that could help focus what your best options are, is seldom advised.

From what you've said, an ENT visit in a different health system than your latest neuro might be worthwhile. If your issues are localized (e.g. nose/tongue burning can be allergic reactions or nutritional deficiencies; grinding can be addressed with a nightguard) rather than neurological, they could easily be affecting your sleep, which could in turn lead to an amped up startle reflex, anxiety, twitching, crying, etc.

Hope this helps.
 
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