Hi All,

As far as my current situation my neuro NP who is handling my case as lead contact has sworn we will find a diagnosis. Ironically, I just met with her on this last Thursday and had a nice one hour session of physical and clinical evaluations to update my file. My EMG's came back normal (what a surprise ) but I think she is onto something.

After being diagnosed with SPMS for five and a half years and then all of a sudden in April being told, NO you don't and never had MS although it was a good call with the information we had available back in 12/00. The NO you don't have MS was confirmed by the Senior Partner of Neurological Associates with my NP right next to him going through my chart with a fine toothed comb.

Now back to this most recent visit. She seems to think, and had the internet information printed off to back her thoughts up, that I may have Hereditary Spastic Paraplegia. Although this is rare it is linked to the family genetics and can be diagnosed based on having specific genetic markers.

If I do not have the genetic makers to proove the above than the next likely diagnosis will be Primary Lateral Sclerosis. This, in my nonmedical opinion, matches all of my symptoms to a T. Ironically, and in typical Mattice fashion, there are only about 500 know cases of it nationwide but they think it is grossly under diagnosed.

I have been referred to Duke University in NC for further evaluation in their Movement Clinic. Interestingly enough, they receive and review your chart in total before they even determin if they need to have you come down. This would be a three and a half hour drive one way, an overnight stay, then who knows what else they can test on me besides looking for the genetic markers. Either way, I would expect they would want to see me to perform the genetic tests at a minimum. We want to know this for my siblings, children and now grandchildren.

Personally, my legs have become noticably smaller due to atrophy and much more weaker. I've even had to change the way I walk with my Canadian crutches to support each leg at a time. Kinda looks like I'm trying out for "March of the Penquins." LOL! Arms are becoming less cooperative and weak and I'm having to use a cane to get around in the house. Wall walking doesn't work anymore. Can't ambulate as far as in the past year without resting and still lose my balance and fall over if my wife is not right next to me to catch me. Still dealing with chronic fatigue, dizzines, and more pronounced chronic pain in my lower back and both legs.

Well that's what's going on with me right now and everyday. I want to thank all of you for your concern and interests in my personal situation. It really makes me feel welcome here and appreciated.

All the best to you in your search for answers. It sounds as if you have been through an awful time of it. I shall be thinking of you. (I won't forget the name, as my brother's name is Craig!) Keep us abreast of your situation.

All the best,
Chris

Thanks for bringing us up tpo date, Craig.

PLS, huh? I looked it up and it does make sense. It actually doesn't sound as devastating as MS and certainly not ALS. They said that the usual age of onset is after 50. Aren't you still in your 40s?

Anyway, I hope that you do get your DX, and proper treatment soon. I will be thinking of you too Craig.

Let us know what they say at Duke and take care of yourself.

Love and Hugs,