I don't think I'm an idiot...

[fitzroy]

My new Neurologist noted AHCD as the only differential on the referral to a neuromuscular specialist for the EMG. Correct me if I'm wrong, but Anterior Horn Cell Disease is the parent for the MNDs? Not surprisingly after an exam, he's also confirmed the atrophy and weakness in both hands along with a few other things.

My Rheumatologist had earlier this week, already called in an MRI of the complete spine along with a second run at Lyme serology. I've been checked up one side and down the other for pretty much every auto-immune condition. I have my one-year-old aggressive Ank Spond and apparently, something else. Crap luck. The question is what.

I know a differential is not a diagnosis. Far from it. The best, worst case scenario my mind can come up with is that the spinal MRI shows up something happening with the cord. Or maybe something else will come into the picture.

The spinal MRI is in two weeks. The EMG is in four weeks. I'm going through a series of changes in the treatments for my Ank Spond in the next few weeks, seeing my GP, seeing my Rheumy again and back to the Neurologist in five weeks.

It's a lot to deal with over the next month but I'll also have a lot of down time to dwell and think. Which sort of sucks. I'd rather have the testing done and know what I'm dealing with so I can move forward.

I think the hardest part is not wanting to let close family know what's being looked in to. I'll need them, infinitely, if I really am dealing with an AHCD but I don't want to scare or concern them until things are somewhat clearer.

Pardon the dump. So, I have a month to distract myself. My hands are becoming a side show. Any advice?

 

[Toto's Dorothy]

Fitzroy, My advice would be to not look up any diseases for symptoms. The mind is a terrible thing to warp. If you need to be on the computer, play some games or look up people you haven't heard from in a long time. Depending on the weather, go for a walk (unless you are unable to), just anything fun to pass the time away. And I want you to know how fortunate you are to be able to get this taken care of so quickly. Here in the US, we wait many more weeks (sometimes months) before getting appts for visits or tests. Geez, I recently had to wait over 6 months to get into a major clinic. So; for today and tomorrow and everyday after, enjoy the day, it's a gift from God!

 

[CGAR]

Hang in there fitz.

Screw the waiting game!
Get out there and do everything you want to do, and everything you can.
If you can't do some things based on your symptoms, modify them so you can.

Stay busy, and keep your mind off the diagnosis.


If it really is as bad as your worst case scenario, then do you really want to waste a whole month worrying about it?
(Easier said than done, I know, been there)

I'm pulling for you, throw a shrimp on the barbie for me!

Cheers,
Casey

 

[TedH5]

I'm with CGAR...worrying and searching the web will not change whatever the ultimate answer turns out to be. I know that the waiting can be painful but if you surround yourself by loved one's and fill your days with activities that enable you to focus on anything but the tests will make the time go by fast and will fill your days with joy rather then angst. You will torture yourself by focusing on what you suspect, the upcoming tests etc.

Remember regarless of how everything turns out you can count on us. This forum is full of wonderful people, and you will find a lot of support, wisdom and friendship.

Good luck and I pray that your MRI shows lots of problems!

 

[HelenL]

The way I look at it is, you can't change it, so even though it will be in the back of your mind, LIVE! Go do the same stuff you would normally do, with accommodations when necessary. You might even want to send out an email to tell your family a little bit about what's going on, so you don't have to keep answering questions about it... or worse, try to hide it from them. I couldn't face telling people in person when I was diagnosed, it was much easier for me to tell them what the docs said, and move on.

That said, I was diagnosed really quickly, and I was alone when my first neuro told me. Absolutely devastating to hear under any circumstances. I was in a major hospital within 10 days for a followup, and immediately had appointments in every case. Maybe because I live outside of Boston, a mecca for hospitals, but even with my crappy "Commonwealth Care" insurance from the state, I really had no waiting.

Good luck, and hope that they find something else. And stay off of here if you can for the next month if you can, and go out and enjoy!

 

[rose]

What Helen said about an email update for your family could be useful in easing them into whatever diagnosis you end up receiving.

My journey was long in finding out what was wrong, and everyone had been informed (to varying degrees) along the way, so when I finally did have answers, there was no big surprise for anyone.

How people assimilate the news is up to them, you can't really do anything about that anyway.

As for the month you have to wait, don't pin all of your hopes on absolute answers in a month, what if you don't get those answers then? That just setting yourself up for the next target "D day".

Yes, it seems to be a long time, but, if you spend the whole time researching, and focusing, not only have you lost a month focusing on unpleasant things, you also can't get that time back, its gone. Whatever is wrong will still be wrong, but you will have not made memories living during that time, you will have just added to your stress level.

Good luck to you, I hope you get the best possible news when the time comes.

 

[Toto's Dorothy]

Fitzroy, you're not an idiot! Forgot to mention that in the previous post.

 

[fitzroy]

Good luck and I pray that your MRI shows lots of problems!

You guys are sweethearts. I've never been more hopeful to find out I have spine issues before in my life. Ha!

I have a close friend who has terminal cancer. There's no particular prognosis or timeline for her except that, as her Oncologist says, her situation is precarious. I'm constantly reminded of our mortality and amazed at the optimism she still exudes. My situation ain't nearly so bad.

I'm currently on medical leave on my Rheumatologist's and GP's advice and will be ramping into a new IV-delevered treatment for the Ank Spond over the next month. So I'll be spending a lot of time at the hospital in any case.

My plan is to get through the loading phase with the new drug, through all the appointments I've already mentioned, and then head to the UK and spend time with family, update them with what I'll know and simply enjoy myself.

In the meantime, I'll hang with friends around Melbourne and do as much photography as I can manage. I'll probably still hang out here and read, do research, ask a few questions, etc. So don't be too annoyed if I poke you guys in the side from time to time.

 

[Kitchener]

Mate
Really feeling for you with all of this. I got dropped on my a r s e by the neuro last year without much more than "you've got an MND - go check the Internet to find out what that means". So far I'm still kicking without too much impediment. Take the advice of the posts on this thread - every day is precious and deserves to be treated as such. Listen to your body and do what you can for as long as you can; and always hope for the best.
Good luck and stay strong
Kitchener

 

[fitzroy]

I'm going to keep my dumb questions in this thread for a little while. This one is a little rhetorical. A competent Neurologist wouldn't have listed AHCD as the differential if the clinical signs weren't there, no?

I'm seeing my GP tomorrow but probably won't get a report from the Neuro appointment for a few more days. I'm not sure I even want to read it until I'm through the rest of the month and see him again in early March. I'll likely talk with a close friend about things this evening but wait on the call or emails to the family until after the MRI.

 

[trfogey]

A competent Neurologist wouldn't have listed AHCD as the differential if the clinical signs weren't there, no?

If AHCD could possibly account for some of your symptoms, a competent neurologist should have it in your differential diagnosis. Not all of the characteristic signs need be there to justify putting it in the differential.

And that's a very important thing to remember.

For example, the first reaction of my GP to seeing my weak thumb five years ago was to schedule me for a cranial CT scan and a Doppler study of the arteries in my neck. Why? Because I was a type 2 diabetic with high blood pressure, high cholesterol, and a pack and a half per day smoking habit, it was possible that I had had a small stroke. However, his most likely candidate diagnosis for me was carpal tunnel syndrome, because I worked with computer keyboards and mice all day. I'm sure he probably had diabetic neuropathy on his list as well.

When I came back three months later with a weaker thumb and noticeable atrophy in the base of the thumb and on the forearm after the CT scan and Doppler study were nonremarkable, all his concerns about cardiovascular problems were dismissed and I got a neurology referral for my first and only EMG within a week. And AHCD appeared on my list of differentials that day, and we know how that turned out.

 

[Toto's Dorothy]

Have your GP ring the neurologist to see if he can fax the report. (If that's what ypu want) talk with that friend. Go out everyday. Discover places you have never been, enjoy life. Don't sit back for the next month twiddling your thumbs and let a whole month go by wasted. You can never get back those days, so for now, grab life by the %@<<$ and enjoy life. Then if bad news comes your way, you know we are here. And even then, still go enjoy life. Just please don't sit around and mope. You get one life, so don't blow it.

Sorry, this isn't what I am usually like.