Update From Zaphoon

[lydia]

Thanks Kim, and Rose as well.

I read the technical definitions of spasticity (how can one make sense of that?), Caroline has tried to explain her lived experience of it to me, and now you guys as well. l really believe that explains my hamstrings, achilles tendon, elbow and possibly even this rubber band feeling around the lower ribcage. Oh to only have a doctor confirm...

Thanks again,

Lydia

[perplexed]

Hi Z,
I'm not that informed on how these tests affect dx, but I know they're part of the progressive work-up. Is there a reason not to have (or to wait to have) a muscle and nerve biopsy at this point? It seems that unless tests have to be done and redone according to a condition's possible progression, some can rule out certain options and are therefore helpful.
Cheers,
Erica

[Zaphoon]

Erica,

Thanks for asking your question. I suppose the answer is that neuro #1 did not want to get that invasive before passing me on to neuro #2. Neuro #2 remarked that I "didn't look sick" on the first visit. 5 months later, he said he didn't think my problems were neurological. How can you go from suspected MND with one neuro (who did a lot of testing) to not neurological? I don't know. So, neuro #2 wasn't about to do any biopsies as he saw no reason.

Neuro #3 has reviewed all of the test findings so far and has opted to continue on the less invasive route. This MRI tomorrow is on a region of the spine not yet looked at (this is prime opportunity to discover a pinched nerve and solve this whole thing).

If the MRI is clean, there will probably be more blood work done and who knows, maybe a referral to a rheumy. The last things on the agenda will probably be spinal tap and biopsy.

I woke up this morning with my arms and legs feeling like lead again. But, I trudged on and was triumphant with my morning's work.

Happy Martin Luther King Jr. day, everybody!

[perplexed]

Hi Z,
Any news on the MRI/pinched nerve direction?
As for different neuros giving different opinions, don't get me started. Additionally there are different patient approaches among doctors; some opt for giving "worst case" options up front, some for keeping their mouths zipped until they know something (the best choice in my opinion), etc. It's hard to find objective realities until everything comes to a head, regardless of the fact that something real is happening inside the body.

Let us know what transpires,
E.