ALS Support Community

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stuffyearsago
I have since spoken to L-H. Not sure what she's thinking now, but she wants me to do EMG of things like tongue. Have that scheduled for UCSF in a couple weeks. I sent her an article about autonomic involvement in ALS, and she said she has no patients like that - just refueling that I have something horribly rare....an ALS subtype....or some other MND....but they all get called "ALS".
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stuffyearsago
I don't know if you read my history, but between 1994 - 2006, I had way, WAY milder neuro symptoms - no breathing issues, no muscle weakness nor changes. Largely sensory. Then suddenly 2006 - 2019, everything went away, I got in great shape, up Half Dome twice, Mt. Whitney 3 times, backpacked, gym rat.....then April 2019, came back with vengeance.
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stuffyearsago
So, just this pattern of symptoms that went away is highly unusual, but I searched and searched and have seen a few reports of early milder symptoms.
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Fasciculation1
I hear ya on the metoprolol. I was on only 25mg once a day, and it was too much, so I cut it in half, to only 12.5 mg a day, and my heart rate still stayed too low. Now that I’m off it, my hr resting returned to normal, but now I get large spikes when I’m active or stressed. When I did my EMg at UCSF two weeks ago, my HR was 130 resting. It’s all so hard and confusing.
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Fasciculation1
I too, like you, want my life to just return to normal as it was not too long ago. I never even used to think about sleeping meds, but now, won’t sleep at all without them and even with them don’t sleep as well as I used to without them.
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Fasciculation1
That is very interesting, that Sxs went away and then came back. Hopefully that points away from als for you, since als is relentless and progressive. Fingers crossed. Where I’m at currently is that I don’t feel great and really want to figure out what’s going on, but can live with anything as long as it’s not als. I’m a psychologist and know this isn’t all in my head, but really has my anxiety heightened.
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stuffyearsago
They block links here, but on alstuttu dot org, there's info:
Things to Possibly Try - We do not know the true mechanisms behind ALS, therefore, it is important to try as many things as possible earlier than later, separately, and in a timely manner to see if any of them make a difference in the quality of your life and/or progression rate.
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Fasciculation1
With all you hiking and staff, have you been tested for Lyme? From what I’ve read, lyme can cause a lot of your symptoms. I recently started seeing an integrative physician in Santa Cruz to try and help figure this all out, and he’s going to test me for heavy metals and even though my lyme done through regular doc was negative, wants me to get tested through Igenex.
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Fasciculation1
Thanks for that info. Very helpful. Do you mind if I ask if you’ve tried any of those trial treatments yet or are you considering any of them?
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stuffyearsago
I had the basic blood test for lyme - negative, and yes, have found ticks on me - small ones, not bitten yet. About 2 years ago, something bit me in the leg, though....in several places, thought it might be nymph ticks....a nest or something....swelled and oozed for a week. Anyway, I am going to have spinal tap soon, so they will check details - western blot.
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stuffyearsago
Looks like I was temporarily banned for posting a link for you. Links are not supposed to be posted, I guess - I missed that in the rules. Guess it was deleted.
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stuffyearsago
My doc wants to do a trial of steroids on me....not sure when....but first spinal tap.
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stuffyearsago
Kaiser neuro thinks autoimmune.....I will try anythiing. I want my life back.
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Fasciculation1
I was able to get the info you posted about the trial of antiviral, steroids etc before it was deleted. I’ve asked my integrative doc in Santa Cruz to try a trial of corticosteroids first and he’s considering it. Fingers crossed for you it’s autoimmune. That’s excellent on lumbar puncture. I just messaged Dr L-H yesterday asking if I can get one too.
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Fasciculation1
Igenex Lyme testing is controversial, but they claim standard blots miss lyme a good percentage of the time. Not sure how accurate all that is though.
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Fasciculation1
I’m so desperate right now, I’m willing to pay the $1k out of pocket to see what the results are.
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Fasciculation1
Maybe trying antivirals would be good for me too. I had an hsv 1 outbreak last year on my lips (first one since high school) before all these symptoms started.
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stuffyearsago
Yeah, I have Kaiser, so L-H was around $600 out of pocket but well worth it. The autoimmune test at Stanford would cost me $10K....not sure what to do....need to learn more about what it entails and how it could help me. L-H said Stanford is the only place that does autoimmune testing around here.
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Fasciculation1
Ahhh. I see on Dr L-H. Makes sense. Glad you saw her.

What do you mean by autoimmune testing? I’m assuming you’re not talking about blood panels? This must be something specialized at Stanford? I saw Stanford Rheumatology in February after my ANA came back positive, but tigers were low at 1:40. After they did all the thorough blood panels, they said I didn’t have autoimmune disease.
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