Help know it's Als

[Trevor49]

Hi I've posted for several years fearing I had als . The last year I've been dealing with weakness and other issues. The doctors put it down to Dermatamylostis. Upon EMG they say they hear inflammation and it's not als . End if April I started experiencing new things like weakness in neck and legs have always been week. Fingers as well. As days progress getting up from chair gets more difficult . My breathing is heavier . I usually weigh 185-190lbs. Today I weigh in at 134 lbs and very week. Hsnds can hardly move. 3 weeks ago the Rheum seeing sent up an spot with a neuro that studies als . Thrvrheumy wsnted to confirm a Derma as the bloodworms didn't show anything to determine derma so that's the reason for appt. the neutron looks at file of me being FC with derma in Mar2014. Does ncv first which I believe was fine. Then does EMG sticks needle in my shoulder and says that's inflammatory not als . My wife is with as she has been on every appt. Rheims convinced derma been on steroids for 3 weeks only gets worse. . Hands are do week neck is tight. Have swallowing issues . Don't hzvd appetite. . My legs shake in bed. I have zero left in my butt cheeks which went first. This is where I sig now . Even my wife snd son see me very skinny round shoulders skinny arms snd can't walk well my legs were the strongest . I also hZve 0 stomach muscles . My family thinks I need to committed plus they say I derma and yell sh me about it . My ride calls md sn idiot retard mental case. My family doctor won't refer me to an als specialists in Zlondon Ontario as I called them and them will see with a doctors note but neither the family or rheumoid will refer me . Do I have two choices comitt suicide or go to the Local hodpitdl that has no Specalists on staff . My wife don't drive and no one else will as well. I'm not very Mobile and can't drive because I can't even open a milk carton. . So I'm screwed . I fear hearing the words by someone else but know in the enc I hZve it. I don't want to deal with this and scared to comit suivide but have trying to gigure out how to . If I do that I'm s coward. My family doctor saw me and said wow you are completely stripped of everything. You can see the muscle wastage as the muscke just hangs the there on my arms. . When the neuro did the testing he only did the ncv and just the musvles . He didn't look at my body . He told my wife and I out of. 5 prople dh sad they day I was only the 2 without als . I questioned hid diagnose but my riffs did he's s expert , my wife dud help me a log now dhod md kea md get dressed ANC others things which I cdng . I have pse come in yo hrlp md during yrdvwerk . I'm not ready hog this. I'm not Loki b got anyone to diagnose me as I'm in withdrawnsl. I have a screw driver ready to go to stick in the sockit but wing have the guts to go it . I gong fcbe muchnhimf before I lours everything . I gong hxcfbodinkillerd yo overdose . I tried the bag on head but couldn't go it I'm find snd if anyone a method that is earlier then I rill listen Trevor

 

[Trevor49]

It's says diagnose dec 201 5 I hzv been diagnosed yet . Please I I'm scared

 

[KimT]

Trevor,

Your post is very difficult to read because it isn't broken into paragraphs and it doesn't make sense. If I'm reading it correctly, you have already seen a neurologist and been told you do not have ALS? Is this correct?

Did they do a lumbar puncture and check for autoimmune diseases (which can cause inflammation?)

Is there someone in your family who can help you communicate with your doctors and find out what is wrong?

 

[GregK]

Trevor.

You have turned into a pest. You need help we cannot provide.

You've previously told us you were Dx with ALS. Now you have a clean emg. You've been doing this for 6 years.

Go away.
Stay away.

Get the help you need.

 

[Trevor49]

Sorry Kim my fingers are weak. I was diagnosed with Dermatomyosis in march 2014 but had really only s rash. Every time I see a neuro which is a lot they base it in the derma dx and I was stronger as well. I have complete muscle loss and my arms it can hardly move. My legs were my strength but that'd is hojng down now as they are getting progressively weaker . Since end of April I've list so much muscle and do much weight I've never weighed 134lbs ,?i have no one yo drive me to the correct place now as my wife and son think derma and want md to exercise and get dressed myself and look after myself which I cDNA fo bug they say of it. Walking yo kitchen I'm completely out of breath .

 

[Trevor49]

Greg yes I've been on here . Yes the others didn't show als . I'm not blowing g smoke here Greg . I can show you pictures of my body and it isn't pretty. This is hitting me fast. My mouth is stuff and losing mg voiced plus the other stuff . I'm truly in denial but this is real. I wish I Wasnthere and I'm not looking for anyone to say anything. I just have no where to turn . Greg I know this is als not asking if it is. Whether you believfr or not it's up to you I do need hrlp but don't know whst to do before I lose full mobility and I'm losing mg voice . Sorry but this is whst is hspoening to me and willing to end my life over it because I don't want Anymore or this and I now gxvd zero support . Common on losing muscle and 50 lbs in 4 months yes I have twitching but the weakness and musvles loss . I can't put in any weight not I have to watch because of swallowing issues could go on Greg but don't want to and I'm pissed

 

[Trevor49]

It wasn't a clean EMG it showed weakness in hands arms legs . The neuro told md that bug heard inflammation

 

[gooseberry]

Dermatomyositis can be confirmed thru bloodwork. I believe it is anti jo antibodies. They originally had this as a working dx for my husband but changed when the antibodies were negative with an abnormal emg which indicated als.

 

[Trevor49]

Blood work is Norman for Derma

 

[affected]

Even our fully paralysed PALS using eyegaze technology use paragraphs and spelling.

I've said this before - we are strangers on the internet. If everyone around you, including many doctors say this isn't ALS then you should go elsewhere. Your EMG does not indicate ALS. EMG is used to find many kinds of issues.

We really cannot support this.

I truly feel for your situation, but you do not have ALS. I know you are distraught, but you are not respecting the people here who are dealing with ALS with your wild claims of suicide at all.

 

[Trevor49]

Tillie
I wish that was true.

 

[Atsugi]

Trevor, in Canada, you might consider talking to DyingWithDignity.CA

Since you don't have ALS, you shouldn't be here.

Sorry to hear your suffering has increased. Good luck with your doctors.

 

[lgelb]

If your EMG shows a myopathic pattern (as it would for dermatomyositis and other muscle-centered diseases), there is a clear pathway for trying not only steroids but other drugs, and for confirmatory tests such as a muscle biopsy for a definitive diagnosis. And a myopathic pattern is not neurogenic (nerve-related), full stop.

You shouldn't be asking for an MND referral, but for referral to a myopathy center for a 2nd opinion given that your disease is not evidently responsive to first-line treatment, and DM can be a complex diagnosis to make. These centers are sometimes one and the same but not always.

As others have noted, the idea that you have ALS appears from our vantage point to be a sad obsession that is evidently keeping you from getting the care you need, physically and mentally. You've only mentioned 2 docs who won't refer you. Surely in your area there are more. For the help you ask for, you must reach out further; obviously, we cannot connect you here with the expertise you need. I imagine that there is at least some telemedicine in Canada as well.

Feel free to check in when you have seen a myopathy expert. We would be interested to know your final diagnosis and recommended treatment as that is good information for others who read the Forums. However, please do not respond again in regards to ALS, as we have plowed that ground thoroughly. Whether you get the help you need, Trevor, is down to you.

Best,
Laurie