Recently diagnosed

[jaws]

Hi,

I've been lurking for some time, and set up an account last month. Though I'd hoped to be able to leave this forum as a scary side note in my life, as of this morning, that's unfortunately not an option for me. :sad:

Backing up a bit: last summer, I found myself unable to clip my nails. Within a couple of months, my right arm strength had deteriorated considerably. I went to a chiropractor, who said I had a pinched nerve, though he found it odd that there was no sensory loss present. After two months of ineffectual adjustments and exercises, I moved on to an orthopedist, who noticed that my left arm was also weak. He ordered x-rays, nothing of course. Then an MRI, which showed a very small syrinx at c5-c6. After a bit of a wild-goose chase and scare, ended up at a neurosurgeon, who said it was smaller than a pimple, and based on size and location, could not possibly cause my symptoms. After a few minutes of reflex & strength tests, he said, quote, I think you have motor neuron disease. I hope to God I'm wrong, but I don't think I am, unquote.

Excellent bedside manners. After a quick check on Wikipedia, begin the real scare and major disruptions in our lives.

He sent me on to a neurologist, who found, on top of my other sypmtoms, quick reflexes in my leg and spasticity in my ankle. He ordered 9 blood tests one week, and another 13 vials the next. Everything (CK levels, B12, Lymes, HIV, etc.) came back negative. Then came the EMG and spinal tap. Nothing in the spinal tap (more Lymes, West Nile, various genetic stuff, etc., all clean). Nerve conduction normal, but fibrillations throughout my arms and legs. He was unwilling at the time to make a determination, and sent me on to the ALS clinic for that dirty job.

Which brings me to now. This doctor said it's definitely ALS/MND. So now I'm in the stupid club.

And yes, I've asked about, and they've shot down, everything else: Kennedy's, MS, MD, Lymes, Meningitis, PMA. Though I did today bring up MMN: though he doesn't think it's that, because of the nerve conduction, but did order an Anti-GM1 test. (Who knows, maybe in two weeks I'll be reporting it was all a big mistake...)

He's prescribed Riluzole and the ongoing blood work that goes along with that. He's hopeful, as I'm a male in my 40s with no bulbar signs, just in the limbs, but said that a better prognosis won't be possible until a few months down the road. He wants me to take 600mg of CoQ10 (which we've priced at $120/month; I'd like to find out how to make it myself, if anyone has any idea), and continue my other supplements: Vitamin E at 400mg, Magnesium Citrate 600mg, Vitamin C up'd to 2000mg. Also 10mg of Creatine (to build up my muscles a bit, hopefully), and 25,000 units of Beta Carotene.

I'm also continuing QiGong classes and started up a membership at the Y to use their pool and some moderate gym work.

In general, though I'm obviously mad and sad, I'm also hopeful and happy to be alive. You know how it goes.

- jaws

 

[abbas child]

I am so sorry. It isn't something anyone is glad to hear, and the emotional roller coaster is the pits. MMN was a hope for me, but the EMG pattern is so different, I'm afraid that isn't at all likely. The only semi-positive thing I know to tell you (but can't find the original post) is that apparently COQ-10 isn't absorbed. Meaning you would just pee it out, so you might want to do your own search and maybe save your money. I hope the person who posted it will show up and confirm that.

Do continue to find ways and reasons to enjoy life. For many reasons... Most of the time, this forum is a place where fun can be had--you've been here, so you probably know it already. I hope that you find it another "home".

Ann

 

[catcaniac]

Welcome and sorry that you had to become a member of this group. I would encourage you to work on trying to do some of the things you have always wanted to while you still can as it seems you have at least gotten your diagnosis in time to make some plans and hopefully stay a bit ahead of the game. You will find a wealth of help and information here as this is quite a knowledgeable group. We look forward to getting to know you better and maybe be there for any trials you may encounter.

 

[KC2U2]

Sorry to have you join us jaws. Take some time to explore the site, you'll find great info and support here.

 

[Chris_b]

Hi Jaws, sorry you have to be here. There's lots of great people here for help and support

 

[Alyoop]

It was me that posted about the co q10. . I asked a neuro professor at a conference recently and he said that it is not absorbed into the cells. I stopped taking it after that as it's expensive.
Aly

 

[abbas child]

Thanks Aly--I was pretty sure you would read and post. Jaws, Aly is a Neuro nurse married to a Neurologist. There are many very savvy people here, and she is one of them. I hope you are beginning your day feeling hopeful.
Ann

 

[tomby]

Very sorry to welcome you to the club- though it sounds like there is still a slim chance it might be something else. Lock that way and make the most of every day

 

[Gusflower]

I'm so sorry for you. But this place is ace.

 

[jaws]

Wow, thanks for the warm welcome everyone!

My wife (we'll call her Gem) said this morning that she felt like a truck hit her. I told her I feel like there's a truck sitting on top of me.

But it's good to know there's such a strong community here. One day at a time, we'll all figure this thing out.

- jaws

 

[abbas child]

Jaws, you and Gem are certainly normal in feeling you've been hit by a truck. You are doing great to even be here, where you might bump into some things you may not want to hear. I found it helpful to be told repeatedly that all losses do not happen in each person. That was a lifeline for me. And Jaws, I'm pretty far into this, but it still holds true. I do still have an area pretty much unaffected. I pray it remains that way, but this is so much easier now, emotionally, I believe it will be fine in any case.
Ann

 

[SueG]

Welcome, jaws, and so sorry for your ALS diagnosis. It's so hard to have you life suddenly re-ordered by three little letters. I second Cathy's (catcaniac's) notion to go do fun things while you can. But don't expect to go-go-go like you used to, if you are anything like me. Cut yourself a lot of slack. I've had to learn to accept people's help, which is bringing blessings daily. And we are taking the kids to Italy, something we had always wanted to do-- leaving next week for 12 days. It will be a much slower-paced trip than my former way of travelling, and that's OK. I'm sure not one of us PALS here has forgotten that awful, sad, tear-filled time just following diagnosis, and we are with you to offer support and hope.

Sue

 

[jaws]

Ann, thanks for sharing that lifeline -- it's definitely encouraging to hear.

Sue, good luck on your trip to Italy! I personally hate to travel, but Gem loves it, which in the past has been a bit of a strain. However, we're both quickly learning not to sweat the small stuff. We have two daughters (the first 7yo, the second 9 months), which would make travel difficult in the best of circumstances. But I've been thinking I should think of some place to go that I would enjoy seeing, especially while I know I'm able.

Aly, thanks for that information. I'd read that about CoQ10 being water soluble, as is Vitamin C, which makes sense that it wouldn't be absorbed by the neurons as Vitamin E is. However, my neurologist strongly encouraged it, and I learned as well that ubiquinol is generally easier to absorb (or rather, that both forms are converted into each other by some people, but not all people can process CoQ10), so am trying out that for now. Alas, I'm still learning my body in its new form, and have yet to learn all the new and strange messages it gives me, so am not sure what to look for. Especially as I imagine its effects are subtle (if at all).

On the other hand, I've noticed a remarked improvement in my cramps since starting Magnesium Citrate last week, so that's a keeper!

@catcaniac, your words are wise to anyone in any condition. Of course, ALS simply makes life more urgent. I fully intend to answer that call -- I started a tradition when I was fifteen where made a five year todo list, and reviewed that every five years, crossing off and adding to the list. It's worked remarkably well for me. I think I'm going to recheck mine this year to make sure I stay on task (and to rethink anything like "rock-climbing" I might have on there).

Thanks again to everyone; I feel welcome here.

- jaws

 

[joni51]

Welcome Jaws, none of us wants to be here for reason, but there are a great bunch of folks here that are here to help. Tell your wife Gem to post too.

 

[jaws]

Thanks, Joni, I'll pass that on to her. She's not into blogging like I am, but I know she'll be glad to know about the encouragement from this community.

- jaws