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Dermatomyositis and ALS?

Onyx56

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Hello Friends. My question might be a bit weird seeing as how I haven’t really found a whole lot of literature on it so I’m here, but has anyone had any experience with existing Dermatomyositis then ALS?

Sending you all of the most positive vibes anywhere ever: you’re Rockstars.
 

KarenNWendyn

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They are two completely different conditions and not related.

Dermatomyositis is an autoimmune condition that is in the family of disorders known as connective tissue diseases along with its cousins systemic lupus, Sjogren Syndrome, Scleroderma, polymyositis and rheumatoid arthritis. Dermatomyositis results in an inflammatory myopathy which causes muscle weakness. The skin and other organ systems are also involved. Treatment involves suppressing the part of the immune system that causes the disease manifestations.

ALS is a neurodegenerative condition and actually is more similar to Parkinson’s and Alzheimer’s in that aspect. As far as we know, immunosuppressive agents don’t work for ALS.

Dermatomyositis is not a risk factor for ALS and vice versa.
 

lgelb

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It is possible to have both, but of course the ALS will be more disabling.

What is your interest in this?

Best,
Laurie
 

Onyx56

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Thank You for taking the time to reply to me. I really appreciate it. It’s really been a whirlwind and I’m still not entirely sure what’s happening. There’s so much randomness and with all the meds and my crappy immune system I cannot always tell what’s from what. I also constantly agonize that it just all in my head:

I have Atypical Insidious Onset Dermatomyositis. It was an absolute nightmare to come to that Diagnosis as it is considerably rare, not to mention statistically speaking, at 30, I’m either too young or too old. I also have some of the less common complications- definitive esophageal and pulmonary, with possible cardiac involvement (My last two EKGs were abnormal, but non specific)

The Distal Weakness, which came after all the rest, howeve, is what seems to be worrying them. It’s unusual and even more so now that the Proximal Weakness seems to responding quite well to all the medicines.

On the flip side they actually seem to be progressing.
Also they apparently look a bit strange too. I can see what they’re talking about, but I didn’t really notice it before or anything. I guess bc It’s not really all that bad.

The weakness might’ve preceded the EMG, but before we knew the actual muscle was abnormal we weren’t sure it was true weakness. It is. So next EMG is gonna be now instead of June with all the bi-annual cancer Screenings. They also requested a specific Dr who we were told is the ALS Dude for the Philly VA, tho maybe/hopefully that was just his version of some sorta fun fact.
 
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lgelb

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Onyx, this isn't the Middle Ages. Feel free to ask the docs straight up why you are being referred to the ALS guy, and when you see the guy, ask him your questions as well. I take it you're a vet?
 

Onyx56

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The other just a fun fact was that just having served in the Military means we’re at double the risk.

I dunno. My moms concerned mostly bc she’s a mom and I’m clearly a mess but some of it, I think, was bc she never really got answer when she asked. It was like when my left boob had shingles and the nipple was bleeding they were worried it might’ve been Breast Cancer bc Dermato but didn’t outright say it until after the fact. He just sort of ordered the MRI and made an appt for 2 weeks out.

There are so many possibilities as to what else it could be and I think the weakness proceeded the EMG which looked more like some sort of myopathic process with no mentions of ALS, which was a differentiall in the beginning .Tbh tho, they seem to have a sort of just to make sure policy these days so I dunno what to think.

Thanks again guys. I truly appreciate you taking the time to respond. The whole thing is a mess and with the Dermato the abnormal is much more common than the normal and it was just plain bizarre. The best to you and yours.
 

Onyx56

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My last reply got cut in half somehow which prolly bc it’s too long so apologies: But yes am a vet- 6 years before my body was like nope and the Army was like k bye. Tho being Medically Retired At 100% bc lifetime health insurance is pretty nice especially now so there’s that.

I made a list of questions for Dr. Q who’s doing the EMG. I have a tendency towards like stage fright when I’m actually at the Doc. It’s One of the reasons my mom comes with me now. Is bringing a whole list of questions weird?

Bc It’s like, I do have anxiety, lots of anxiety for sure, and now that they know all the weird stuff from the last year or so is from an actual, tho rare disease, so they’re less apt to think it’s like “that” kind of Medical Anxiety, I’m still worried just asking, wait ALS ? Sounds remotely like that’s the case they’ll just send me straight to Behavioral Health every time until the end of time.

I’ve had Dermato for a good bit longer than when I was officially diagnosed and my previous PCP used to send me every time I saw her.

One time I had a strep throat. An ear infection had the same results. Like I needed antibiotics, not Valium Lady. I do get lots of infections tho and I’m sick like 78% of the time. I know stress and anxiety contributes to all that, but I also really just don’t have enough Immunoglobulins.

(IgG is 470 and my labs lower limit is 891. They’re not sure why tho yet. It just keeps going down. It was 585 the first time they tested it whenI somehow got Shingles on my face. I should not be getting shingles anywhere)

Ahhh, sorry! This one is long too! Again Thank You for your time. Hope you’re having a very wonderful Day/night!!!
 

Nikki J

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Hi I am going to try to summarize what I believe you said as it is hard for some of our members to read through everything

You are a 30 yo miliary veteran with a diagnosis of dermatomyositis. You developed distal weakness which is considered atypical and an emg has been ordered. Your concern is because they mentioned it will be performed by an ALS specialist and also said that veterans have twice the incidence of ALS of the general population. You previously had an emg ( this distal weakness may or may not have been present then you are not sure) which showed some myopathy.

You also have had health issues relating to infections.

Your original question was if people had experience with co existing ALS and dermatomyositis.

It is more than reasonable to bring a list of questions to a doctor’s appointment. I do it I do try to organize them into 2 or 3 main questions sometimes with subquestions in each category. If you are being referred for the doctor to do just a test without also a consult the list is probably not so appropriate.

I agree with Laurie that you should talk to the doctor who is sending you to find out what their reasoning is.

Good luck
 
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