I have been lurking on the site for yrs. DXd 5 yrs ago w/MS; RRMS or PPMS was not determined @ that time but it looked progressive. I had been experiencing symptoms that clearly indicated something was WRONG for 2 yrs before breaking down and dealing w/it. My early symptoms, foot drop mainly after strenuous exercise, seemed like they could indicate not only MS, but ALS or Parkinson's. My feeling was, I am in no rush to be diagnosed w/ any of the above and I simply cannot handle a DX of ALS so just wait and watch. Had a rough couple of yrs emotionally, keeping all that to myself.
As time passed, it seemed more and more like MS, or I should say less and less like Parkinson's and ALS. I finally broke down and went to a PCP after 2 yrs of alarming symptoms. The PCP DXd me w/MS before referring me to a neuro who confirmed the diagnosis (after extensive testing). Living in Boston I have access to the "best" MS Dr.s which is essentially irrelevant.
Anyhow, my well known neuro DXd me w/MS, what kind, well we can only watch, wait and see, but it seemed progressive. I'd been experiencing Lhermitte's intermittently since about age 10 (was 26 @ time of DX) so I think I had very mild RRMS for much of my life before the disease started progressing. So, SPMS, or PPMS, does it matter anyway.
I've been leery of getting into the whole CRABS thing, especially considering the progressive nature of my condition though my 1st neuro kept pushing the drugs. Not feeling up to the drugs, especially since I saw no point I moved to a different well known neuro who diagnosed me w/PPMS and essentially said feel free to touch base once a yr for a reality check but there is no treatment for you. When your condition worsens we'll be happy to prescribe drugs for the symptoms but, hey, whaddya gonna do??
Much of my discomfort w/this condition revolves around the anxiety associated w/becoming "that guy" to everyone around me. Of course, the uncertainty about my future sucks. I find myself watching the gait of strangers and envying the way they smoothly walk, left right, left right. I'm a bit bummed out; @ this point the 1 thing that IS treatable is the debilitating depression I'm experiencing, but I'm trapped. No insurance, though probably eligible for free healthcare in MA where I live but I can't motivate myself to do anything because I'm so depressed. AHHH!!
So, thanks for reading and 'hello'. Looking forward to interacting w/ you guys.
-Phil
Hello
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Artifishual
- Family Elder
- Posts: 646
- Joined: Sun Mar 09, 2008 3:00 pm
- Contact:
Hey Phil
Welcome - nice to meet you. I am sorry that you are here though, as this is not a nice place to be (except for the people, of course!). I hope that you will connect with some folks and get some helpful information.
The depression is treatable, lots of folks here have taken or are taking anti-depressants, so it might be worthwhile getting your health care eligibility sorted out, if only for that.
I know that this disease is a horrible reality, but if you are less depressed, you may be able to feel a bit better emotionally - that whole mind body thing - psycho-neuro-immunology!
All the best - look forward to hearing more from you.
Welcome - nice to meet you. I am sorry that you are here though, as this is not a nice place to be (except for the people, of course!). I hope that you will connect with some folks and get some helpful information.
The depression is treatable, lots of folks here have taken or are taking anti-depressants, so it might be worthwhile getting your health care eligibility sorted out, if only for that.
I know that this disease is a horrible reality, but if you are less depressed, you may be able to feel a bit better emotionally - that whole mind body thing - psycho-neuro-immunology!
All the best - look forward to hearing more from you.
Al
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Loobie
- Family Elder
- Posts: 2198
- Joined: Mon Sep 11, 2006 2:00 pm
- Location: Dayton, Ohio USA
- Contact:
Welcome Phil,
Never feel like a pariah dude. You are still Phil, you just do shit slower than you used to. Really work on 'living in the now' so you can enjoy what may be right in front of you that you wouldn't be able to if you're constantly stressed about the future. Focus on what you can still do and not on what you can't. You can do it man. Your logging on here shows you want to do something, and this is a great place to start. Welcome aboard and I hope you use this board to learn and also to vent when you need to. We can take it all! We are all in this together and that is always a little consoling to me. Good luck and I hope your blues go away!
Lew
Never feel like a pariah dude. You are still Phil, you just do shit slower than you used to. Really work on 'living in the now' so you can enjoy what may be right in front of you that you wouldn't be able to if you're constantly stressed about the future. Focus on what you can still do and not on what you can't. You can do it man. Your logging on here shows you want to do something, and this is a great place to start. Welcome aboard and I hope you use this board to learn and also to vent when you need to. We can take it all! We are all in this together and that is always a little consoling to me. Good luck and I hope your blues go away!
Lew