Not to be a nag, but have you got an appointment yet?
Yes, I have an appointment on May 28; it was the earliest I could get. No change really, except there is a spot on the palm of my hand, just under my left index finger, that feels like I’ve just burned it, but with no visible signs. And my fingers seem kind of stiff.
Thanks for asking, I’ll keep everyone updated.
My guess: Lupus
(Ok, I’ll be the straight man…)
It’s never Lupus.
Had any back, neck, or hip injuries? I had some of these symptoms ion my feet and it turns out I had some aggravated muscles and hip displacement that were pinching off nerves. some chiropractic adjustments and exercise and I am improved greatly.
I had similar symptoms, and I was diagnosed with pernicious anemia. I have to get vitamin B12 injections in my muscles every month for the rest of my life.
Bah, was going to say Footbusters.
I haven’t had any injuries but have had hip/lower back problems on and off since my 20’s. In 2011, while awkwardly trying to transfer myself from a gurney to the MRI bed, an attendant said, “you’ve had your hip dislocated, haven’t you?” Nope.
Would pernicious anemia show up on a physical? I had a full physical not long ago, and none of the signs turned up.
I moved my Doctor visit to today. I couldn’t wait any more, it’s getting worse.
Obviously, please come back and fill us in, we’re very nosey.
(Just if you feel like it but, seriously, good luck with getting a proper diagnosis.)
He’s leaning more toward myalgia. It would certainly explain the general all over muscle soreness and fatigue (my arms and legs get tired while driving) in addition to the burning/numbness. I had bloodwork done but have to wait two weeks for a nerve test and I’m miserable; he didn’t give me any pain meds.
Myalgia is a pretty vague term - it’s a fancy word for “you have muscle pain”. From what you’ve described, it’s more than muscles anyway. Might he have said something else (e.g. fibromyalgia)?
Any more update?
Agreed “myalgia” don’t mean diddly. Not a diagnosis, a symptom, and not even a good descriptor of your symptoms as you’ve shared here. “Fibromyalgia” is only borderline better as a grab bag for a variety of chronic muscle pain conditions with no clear causes. “Myositis” at least would mean something, measurable inflammation of the muscles as documented by muscle enzymes leaking out. It would still be an open question as to why that was happening but you’d have a clear direction to go in. But that is a simple blood test the results you should have by now.
How much longer until your nerve conduction velocity test (I assume that is the nerve test scheduled)? If that is abnormal then you are in the neuropathy group and the work-up can proceed from there. I have a hard time not finding your mother’s history of foot neuropathy as highly significant.
I’m getting the nerve test tomorrow, then I will follow up next week with my doctor after he looks at the results. Myalgia is the term he used; I found it odd too. And I got some Gabapentin for pain; it takes the edge off. My mother’s hydrocodone and tramadol work better, however (and neither gets me high). What goes on in a nerve conduction velocity test?
From Wikipedia. I had this (plus an electromyelogram) about 15 years back.
With the nerve conduction, IIRC they had electrodes on two different spots on my legs and basically zapped an electrode with gradually increasing amounts of “juice”. It was reasonably unpleasant, I won’t kid you. The electromyelogram was similarly unpleasant but not as bad as the nerve conduction.
However, they sound pretty “on topic” for the kind of symptoms you’ve been having.
Have they checked you for MS? IIRC, the only true test is scar tissue on nerves/brain as determined by an MRI. My wife has MS and, at certain times, has experienced some of your symptoms.
She went undiagnosed for almost 20 years because her episodes were far apart and would clear up on their own before the doctors could make a diagnosis. We often got vague explanations like, " it must have been an inner ear infection, or a pinched nerve, or a virus." Several years ago she had an episode which caused sever back pain and upon performing an MRI they found the scarring.
Be persistent & good luck.
That doesn’t sound fun. The appointment is at 2:30 EST. The report, now that I look at it, does say I could have “peripheral neuropathy” or “fibromyalgia”.
They haven’t checked me specifically for MS but I did have an MRI done on my head and abdomen 2 years ago. I suppose they’d have seen it then.
Thanks for the support, everyone.
Good luck with the test.
Gabapentin is pretty much the standard mainstay of chronic pain management. Others may tend to build tolerance fairly quickly requiring higher and higher doses. It is often used in combination with other meds I think (not my expertise mind you).
I hope whatever they find they can help you manage the pain well.
Yeah, my understanding is the same re gabapentin (brand name Neurontin) and nerve-based pain. Lyrical (pregabalin) is similar - dunno if it’s more effective on the symptoms but it’s certainly more effective on the drug company’s bottom line ;).
Neupro is a pro-drug of Neurontin (i.e. it’s metabolized into gabapentin in the body); I understand it’s supposed to have more reliable absorption, less sensitive to timing re food, etc. As it’s being pushed for use with Restless Legs Syndrome, a number of folks have tried it, and my sleep specialist was the one who told me about the absorption improvement.
I had a nerve conductivity test done a few months ago on my arm. It was, as said above, unpleasant. Hope yours went smoothly.
My mother had told me originally that if it was neuropathy they’d give me cymbalta or lyrica. I had never heard of gabapentin until now but she had; she’s tried everything at this point. Nothing seems to work for her but she’s lucky it’s just in her feet. It’s in my hands too, especially my left hand, and I’m left handed.
The test was not very pleasant but not too bad. They shocked me in various parts of my legs and watched my foot twitch in response. Everything worked until the guy got to the outside of my calf, between my knee and ankle. I could feel the shocks but they were muted and my feet didn’t move at all. So that was marked down.
When I brought up my left hand, which hurts worse, he stuck something in various parts of my arm, actually breaking the skin, and watched some sort of monitor, but didn’t find any evidence of what he thought might be a pinched nerve. The shock test didn’t show any problems with my hand either.
So, I got more bloodwork done, specific to neuropathy according to him. Followup is next Friday. The doctor actually said, “I’m going to have to really work on this to find out what’s wrong.” And he did say this time that it could be hereditary.