Neuromuscular In memory of Rose Marie.


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Old 08-26-2015, 02:12 AM #1
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Default Distal fatigue, Painful Calves

Hi all new to the forum. My name is Cal.

Over a year ago I started out by having sore calves.
I was a keen runner then all of a sudden i couldn't run as it felt like both my calves were about to give out. I noticed that both calves had become sensitive to touch, like they were bruised or like muscles do the day after a heavy first gym session.

I quit running and instead moved to cycling, although i still had painful calves i was able to continue, and still can continue cycling.
I have some foot drop.

I am a computer programmer.
Earlier this year, overnight, my forearms suddenly stopped me from typing.
I can type for about 5 minutes before i feel the fatigue. Moving the mouse was much more difficult. This has not abated and i have now been without work for 4 months.

I have had MRI of full spine and brain. both normal.
Blood tests are normal except a slightly elevated CK. (very slightly)
I have had an EMG, which is normal.
I have had a muscle biopsy. I am awaiting results but i suspect (as does my neurologist) it too will be normal.

I'm at a bit of a loss what to do as when my muscle biopsy comes back normal, we may be at the end of the road. Diagnostically speaking.

I seem to have the symptoms only in my lower legs and lower arms.
I'm wondering if anyone else has similar symptoms and can shed any light?

Thanks
Cal
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Old 08-26-2015, 02:26 AM #2
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should also note there is no muscle wasting.
I also still have my strength, I can weightlift, but not use a mouse.

no diet has helped thus far. I have entered ketosis, tried fasting, high carb.

it is variable to some degree, with some days being much easier than others.

I am on pregabalin which does help the calve pain/tenderness.
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Old 08-27-2015, 09:51 PM #3
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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
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Old 08-28-2015, 09:49 AM #4
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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
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Old 08-28-2015, 11:46 AM #5
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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
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