Its been a little of 3 months since I have been on the boards. Since that time, I have had about 10 doctors appointments(neuro, rheumy, podiatrist).
I had my final and worst neuro appt. I was pretty much told, "we can't figure it out, give us a call if something new and visible happens?" I told the doctor that I knew the appointment was a waste of my time.
I have been seeing my rheumy since 2002 for joint pain. Most recently he found that my vitamin D level was severely low. Out of 100, my vitamin D level was 10. He did some blood work again (I get the results on Wednesday), ordered an xray of my feet, and referred me to a podiatrist. Why my feet? Because they hurt every single day! I wake up in the morning dreading the first step out of bed. It is torture. I have pretty much given up on the high heels I have been wearing comfortably for decades. Now I put on flat "old lady shoes" (as my daughter calls them) and my feet still hurt. If I drive or sit in one place for more than a half hour, my feet burn and ache.
The podiatrist was really nice. He told me that my problem doesn't appear mechanical (caused by injury) but systemic. Nonetheless, he is ordering me (a 35 year old) into orthotics and special shoes! URG!!! My husband thinks it is funny. I know he doesn't mean any harm, but I am definitely NOT looking forward to those shoes.
Here is my problem, the chronic foot pain is just another symptom of my body falling apart. Here is up I am now dealing with:
- muscle spasms, twitching, and burning (all over...face (eyes, lips, cheeks), arms, legs, torso, neck, back, hands, feet, fingers and toes...over over)
- my legs are tired and achey all the time
- my left leg tends to drag (not very noticable unless I trip)
- my left leg causes me to limp at times (I get alot of hip pain)
- hands, wrists, shoulders, knees, hips, and ankles are stiff and achey
I don't know what this is. Could be Lupus, MS. or a host of other things. Right? I am just very afraid that the chronic pain, muscle spasms, and joint stiffness are being misdiagnosed. Does this sound like Lupus?
HI, it could be many things, and you might even have more than one condition going on. Have you ever had your hips and/or spine MRI'd? Especially with you saying you're left leg drags & causes you to limp. Do you have any pain that goes down the left leg or into the foot? I only ask b/c one thing that can cause that is compression in the spine. I don't know if you have drop foot....can you lift your foot when you walk? Or does it drag, which causes you to trip? Also, sometimes spine compression can cause pain in the hips. There are so many possibilities.
Thanks for the reply. I have not had my spine or hip MRI'd. Unfortunately for me, my pain does not always present when I am with the doctor. I will ask my rheumy about getting them MRI'd. I'm not sure it is is drop foot but I do feel like I have to give extra effort to lift my left foot when walking. This is just so frustrating. Hopefully my bloodwork will show something. I see my rheumy on Weds. I'll let you know. THanks again.
Hi, Michelle. Have you asked for copies of your bloodwork, etc., so you can see what tests your drs. have run?
About the burning sensation: does this feel muscular? Maybe vascular? Have you noticed any skin changes, on the surface or below?
About Vitamin D deficiency: I was deficient, chronically, but I had malabsorption due to chronic GI problems. I was also B-12 deficient, which is one form of anemia. One set of lab results came back with a computer-generated footnote noting that "unexplained neuropsychiatric problems" wre associated with these two deficiencies. My legs & arms twitched, and tingled a lot, as though little critters were flitting about under the skin surface.
My suburban docs attributed my anemia to my GI problems, I suspect. It took me years more to learn BOTH were probably being driven by lupus (those, plus a whole lot of other problems, too).
Since you know one thing for sure---your Vitamin D is very low---you could use the search box above to check on the various reasons for Vitamin D deficiency.
Hope this gives you more things to ponder & perhaps discuss with your rheumie, etc. Best wishes, Vee (P.S. During bad flares, the soles of my feet used to hurt horribly.) GOOD LUCK!
I have not received all copies of my bloodwork and other tests, I will get on top of that. The burning sensations feel muscular, I think. The burning is mostly in my face and fingertips
I have you noticed skin changes, most of which are embarrassing. I have this reoccuring rash in the folds between my legs and vaginal area. I can't see but I think the rash is also in my anal area. I also have a reoccuring rash in my ear cannals and cheeks. I use a cortisone cream from Aveeno to reduce the itch. I need to see a dermatologist but I haven't made an appointment yet.
The twitching and tingling you describe in your arms and legs are exactly what I suffer, as well a the critters in my face. The twitching and tingling Because I do not have any preexisting conditions to explain my Vitamin D deficiency, my rheumy seems very concerned. I will see on Wednesday if the 50,000 micrograms of Vit D I took for 6 weeks on top of 1,000 micrograms daily did any good.
My rheumy specializes in Lupus which is why I have not given up on him. A friend of mine with Lupus has been seeing him for years and continually sings his praises. Since my mother's sister had Lupus, he is open to the possibility that Lupus is the cause of my symptoms. He told me that it is "Lupus-like" whatever it is.