Hi Cal,

Welcome to NeuroTalk.

Your symptoms/signs sound very frustrating and quite limiting.

EMGs can look normal, especially in the beginning of a condition.
Interesting your CPK was elevated, even if slightly.

As for lack of muscle wasting, there are conditions which are considered "non-dystrophic." (no muscle wasting.)

Any chance your neurologist will do any DNA testing to see if he can identify any neuromuscular disorder?

The neurology group I see now often does DNA testing before doing muscle biopsies, if muscle biopsies are done at all.

Any peripheral neuropathy involved?

I have similar symptoms, yet I have had PN for 30 years.
In addition to distal weakness and muscle stiffness/cramping, I have muscle stiffness/cramping (extremely severe throughout my whole body).
I am undergoing DNA testing to confirm an additional neuromuscular diagnosis.

I hope your doctor can help you.

Warmly,
DejaVu

I asked my neurologist about DNA testing and he said it was a waste of time as its more of a "scatter gun approach" and would most likely detract from a linear investigation.

zero cramping anywhere although i have been having twitching, which, even though I mentioned was largely ignored and classed as "normal".

The following may have no bearing (the doctors certainly think so anyway), but thought i'd mention:
- After the pain in my calves began (4-6 months later) I noticed a terrible bout of raynauds, which i'd not had in 10+ years
- I'd had ear infections in both ears on and off for over a year (doctor told me i had spontaneously acquired glue ear, again was told "normal")
- I'd had a tooth infection from 2 failed root canals directly before my calves started showing symptoms. I left it for over a year as the pain was minor, the tooth was extracted last week.
- I had a fall down the stairs with caused a major bruise on my thigh, the muscle and skin was pliable for a short time (maybe one week)

please let me know how your DNA testing goes, I am very interested.

Cal

Hi Cal,

I agree with your neurologist re: completing a linear investigation prior to DNA testing. In my case, we are using DNA testing to differentiate between two subtypes of a neuromuscular disorder.

There are so many possibilities within neuromuscular diagnoses, the results of my DNA testing will not be relevant to your condition.

I can empathize with the distal weaknesses.
I can also empathize with going through the diagnostic process and not having answers for a long time.

It can be so frustrating not having a diagnosis and wondering. During these times, I try to be present as much as possible for each day, for today. I try to have the best day possible each day.

I hope your doctor will continue work-ups, as sometimes more shows up in testing, with time. Do you see a rheumatologist for Raynaud's?

I've had good luck with my neurologist and rheumatologist both testing and communicating with one another.

Take care!
DejaVu