I'm new too...

[Mike C]

Not officially diagnosed yet but all signs pointing in the ALS direction. Been going through testing for the past month and going for MRIs tomorrow and Friday. Every time I google a symptom the more reality sets in. I haven't told anyone yet but I need to soon. I'm single with no kids, going to have to rely on my family to take care of me. My Mother is 87 and this might just be too much for her. She buried my Brother 15 years ago. I need to find peace, does it get easier once you talk about it and let people know?
Thanks for any tips, still recovering from the gut punch...

 

[lgelb]

There is no point to telling anyone, let alone your mom, anything until you know for sure. Googling symptoms is hardly a definitive diagnosis. I changed your status for that reason.

Keep us posted.

Best,
Laurie

 

[Nikki J]

hi sorry for all you are going through

we asked that people not yet diagnosed post only in this subforum.

it isn’t clear from your post what tests you have had, what the results may have been and who thinks all the signs point to ALS.

if you are not diagnosed I certainly would not tell anyone I was or expected to be. To deal with your concerns confide in a close friend

 

[Mike C]

Thanks Nikki, I understand.
Although not officially diagnosed my Neurologist already set me up for a second opinion and told me to think about getting my business sorted. I fully understand the need to focus on confirmed cases and will follow your directions on posting.

Thanks again
Mike

 

[Nikki J]

I hope your second opinion is neuromuscular preferably an ALS specialist. Mayo Jx or UF are both pretty close to you

 

[Mike C]

Yes, scheduled at Mayo in the beginning of March. That's a long time to be in the dark, hoping for the best.

 

[Nikki J]

Oh excellent. I know it seems like forever but try to keep busy and do some fun things for yourself. However it turns out you will be glad you did

 

[KimT]

Hi Mike,
I'm in DB Shores so we're very close. Hoping it isn't ALS. Please keep us posted.

 

[Mike C]

Hi Mike,
I'm in DB Shores so we're very close. Hoping it isn't ALS. Please keep us posted.

Will do Kim, thanks!

 

[Kristina1]

Sorry you are going through this. I hope it's not ALS. The diagnosis process is so difficult emotionally. Would you like to tell us your story?

 

[Nikki J]

Yes you are welcome to share your story/ the diagnosis process here. I think maybe my first post to you sounded like you could not for which I am sorry. On the other hand, if you prefer not that is ok too. virtually all of us had to wait for our neuromuscular or second opinion

 

[Mike C]

Thanks Kristina, I'm ok with telling my story.

Started with me feeling fatigued, drained all the time, foggy brain, delayed decision making, confusion, cranky moods, weak legs... I was due for a follow up visit with my Dr because I had elevated liver counts. Long story short, I had them test for Haemochromotosis, the Celtic Curse. It's a blood disorder that my blood absorbs too much iron (iron overload). All of these symptoms are associated with Haemochromotosis and I was diagnosed with having it. Ok, fine, get blood draws weekly till my numbers get in to range... Then my right index finger isn't working right, my mouse clicking finger, new job has a lot of computer time... I think it's carpal tunnel, then my bicep starts twitching... Go to Neurologist and he seems to have targeted tests he's performing... walk on toes, walk on heals, stick out your tongue… etc. At the end of exam tells me he can't rule out ALS, starts nerve tests immediately. Go back the next week to finish nerve tests, Dr. reiterates, can't rule out ALS, he's very somber. I ask has he diagnosed it before, he tells me he diagnoses 5-6 patients a year... now I'm worried, he tells me he's going to start the second opinion referral right away, before I get the MRI. Then I start my google searches and had to stop, too much was adding up...

I just moved up here from South Florida and had grand plans for the next chapter in my life. Semi Retire... I'm currently staying with my 87 year old Mother and I don't know how I'm going to tell her when it's time... I'm home from work and she thinks it's because of the Haemochromotosis. I don't know how long I can keep that charade going if I start to decline rapidly...

I think I'm good financially, have insurance, rental income and 401K just have no idea how to prepare for this.

 

[Nikki J]

When you say nerve tests you mean ncs and emg? Do you have those results? Can’t rule out sounds like your neuro is far from sure so please don’t give up hope

 

[KarenNWendyn]

Definitely seek an opinion from a neuromuscular specialist.
Hemochromatosis can affect the joints and cause a type of arthritis that can make it hard to move those joints normally. Fingers are often involved.
But it doesn’t cause a neuromuscular problem. If you had both hemochromatosis as well as a neuromuscular disorder, that would be unusual, but not impossible.

 

[Mike C]

When you say nerve tests you mean ncs and emg? Do you have those results? Can’t rule out sounds like your neuro is far from sure so please don’t give up hope

I believe so Nikki, I didn't ask what the tests were called but he did the acupuncture and shock test through wire leads on my arms and legs. I know he hasn't compiled all the results and given a final diagnosis, but the seriousness in his demeaner was apparent. I'm staying as positive as possible, having trouble sleeping though, a lot on my mind...