I know better, but...

[beaumonde]

I have been reading these DIHALS posts for over a year now.

I have learned - widespread twitching is not a first symptom of ALS. (Mine started 4/11.)

I have learned - get an EMG. If it is clean - no ALS. (I had a clean EMG about 8 months ago.)

I have learned - ALS symptoms don't come and go. (My twitching comes and goes but is usually present in some form or another. Currently a huge increase in twitching...)

I have learned - about BFS (But maybe not enough? My new PCP said he read a report that GERD meds can cause this?)

I have learned - perceived weakness means nothing. (Mine in left hand, arm, foot and leg have gotten worse in last month.)

I have learned - anxiety is not anyone's friend. (I have never been diagnosed with anxiety though obviously have it to some degree.)

I have learned - work with PCP on diagnosis, not Dr. G or ALSForum folks. (No offense - I clearly have learned a lot from you.)

Guess I'm struggling to follow what I've learned because it's been over a year and the perceived weakness and increase in twitching have brought back fear.

I had a clean MRI.

I have been told I have Hashimoto's Thyroiditis and am on a very low dose of Synthroid.

I had a Lyme Literate CRNP tell me after a test that I had a questionable Bartonella (Lyme co-infection) result, but not a positive Lyme result. I also had an MD tell me to disregard those tests.

I have recently discovered a mold problem in my house (working on clean up).

So, my ALS forum friends, what say you - other than, "You already know you don't have ALS, so why are you bothering us?"

I guess my big question is: does it make sense to have another EMG?

Should I pursue the Bartonella? Could it be the thyroiditis? Could it be the mold? Was it the GERD meds?

I already hear the answer - "Could be any of those, but based on what you've said, it's not ALS. Work with your PCP."

I know, I know. Maybe at least someone else will learn something from my post.

 

[ghost_writer]

Does the increase in symptoms co-relate to the mold clean up? Did the found mold appear to have been existing (hidden) during the time of symptom onset?

 

[Toto's Dorothy]

You aren't related or friends with plznotals, are you? The reason I ask that is the fact that you have read for over a year and you know better but still post. Also, his girlfriend has Ha shi mo to's. Just seems to much of a coicidence that we shit him down and you pop up.

Please be honest, we do have ways by checking your IP address.

 

[beaumonde]

Ghost Writer - clean up hasn't officially begun (meeting today), but I do believe it has something to do with my issues. I believe it was there when I first started having symptoms. I'm from PA. I only recently started using my AC. And yes, that makes sense if that's where the mold is coming from. Toto, sorry, I don't have any idea who plznotals is. I haven't read all the posts over the year, but do check in from time to time. Now I feel bad about posting because I'm sure it is aggravating to those PALS if it's obvious to them my symptoms do not sound like ALS.

I worry that the mold has been a trigger.

Wondering about the idea of a second EMG...

 

[fitzroy]

Wondering about the idea of a second EMG...

No one here can answer this question for you. It's going to be up to you whether it will help you move forward or not. For most people that post in this section, it seems to only rile their anxieties that much more. No matter the outcome.

Of course, if your health team are saying you should, you should be listening to them over an internet forum.

 

[Grateful]

Well, pznotals/popeye/beaumonde, I'm not a doctor so I can't provide a response to your question, but you knew that anyway.

You claim not to be suffering from excessive anxiety, so if I were a doctor I would be leaning towards a diagnosis of Munchausen's syndrome. After all, someone who wants an invasive medical procedure when there is apparently no evidence to suggest it is needed is either hysterical with fear or a Munchie...

 

[notme]

I don't know if this is the same person that's posted before--but CLEAN EMG means NO ALS, so you're good to look for other causes of your condition.

And before you ask--NO an EMG can not be too early if you're having symptoms. Period. Even if the symptoms are in another limb. Changes in EMG show up months before you'd see signs. It takes a while for the damage to paralyze the limb--so during this time, the EMG shows things that your body doesn't feel--because other muscles are working to compensate. Eventually, they can't any longer, and you have symptoms.

 

[Toto's Dorothy]

Beau, If you had nothing to hide, why did you erase where you are from?

Family, Me thinks she's a wolf in sheeps clothing.

Beau, I second opinion Grateful's di ag no sis. An ti- an xi ety meds will work wonders. Good luck to your doc tors.

Family, Nipped it in the bud. Good work, wonder who they will be next?

 

[notme]

Do we know this is poipeye person? We know popeye is pznotals because they used both names in the pznotals thread.... Wish there was an easy way to see if there is a person using two or three names.

 

[Toto's Dorothy]

Not me, what gave it away was I was concerned about his girlfriend and I pushed his symp toms to the side. He didn't matter, but the girlfriend did with her symp toms. She also had Ha shi mo to's, and what are the chances of that popping up first post or at all. Wanted us to take notice and us not push him away again.

And we can always ask David to check the IP Server. That's how our wonderful Al did it with Kel M.