Hello everyone. It has been a long while since I have been here. It's nice to know I still have somewhere to turn for some reassurce tho. Here is where I stand: After 2-3 years still no diagnosis. MRI's are still normal. LP - normal. Evoked Potential Test - normal. So basically there is nothing wrong with me. except for the fact that I have so MANY symptoms that seem to come from nowhere.
Here we go....numbness in toes feet and lower legs, right leg aches horribly (like the bone is aching), irratic heart rythym, extreme fatigue, brain fog, pins and needles in hands and arms (although the Neurontin does seem to be helping this symptom), shakiness (have a hard time reading my own handwriting) and here's the newest one that is sending me over the edge--my right thigh is vibrating for about 2-3 seconds and recurring about every 5 seconds. Not painful just VERY annoying. Enough to keep me awake at night.
This started about three days ago and hasn't stopped. Will someone please give me an idea of where to turn. The Neuro doen't seem to be getting anywhere. What else could this be?? Thanks so much for listening.
if it were me, id be turning to a new neuro! Its time for a second opinion or third...whatever it takes. No one should have to live for years without answers...it appears your doctor isnt running the correct tests in order to Dx you..
you should have a complete blood workup. thyroid, vitamind all checked for low levels.and if you are not getting any help from your docs i might suggest you see a homapathic doc
i had all the same symtpoms as you, and was checked for ms, lupus,and the list goes on. my doc finailly found that i have low vit d hashimotos (thyroid antibodies) and now hypothyroid which i take mes for and iam feeling lots better now. i hpoe this has help you some good luck
Thanks MSNik. Actually now is a good time to find a new Neuro because the one I have been going to is actually relocating. My last appt with him was just this past week (Oct 6) so my next appt will be in 6 months but I am going to schedule with a new Neuro. Thanks for the reply!
To: Nanashouse, I have had complete bloodwork done numerous times. This last test (about three weeks ago) showed low vitamin d levels (i wasn't told what the actual numbers showed) but docs said it wasn't low enough to be causing these symptoms.
I also have been tested and retested for Lyme's and lupus and MS and probably every other neurological possibility. As for the thyroid, I was diagnosed with Grave's Disease about 5 years ago and had radiation on my thyroid so I now take synthroid and my levels are monitored regularly. I'm not saying my symptoms are not somehow related to that, but if they are, for some reason they are not being controled by meds.
I am also on tenormin for high blood pressure, and zocor for high cholesterol, neurontin for my tingling. I have started taking an over the counter vitamin d and I am supposed to be rechecked in a week to recheck vitamin d.
I'm so glad they found the cause of your symptoms! What a relief to know what the cause is!
Thank you so much for responding so quickly. Bless you all
Thanks for the reply JayHawk. I was just curious if anyone else out there was vibrating It's extremely annoying. I will keep on trying to figure this thing out. At my last visit the Neuro said, "There are people like you that have all these symptoms and sometimes we NEVER figure out what is causing them so we will just continue to treat you symptomatically." That is not what I wanted to hear.
Thanks everyone for your time and support. Have a wonderful day!
I have the vibrating also, and keep thinking it's my phone. I get the vibrations on the bottom of one foot or the other, and one leg or the other. It was really bad at night when I was unable to walk, all over my body while lying in bed.
The vibrations, while annoying, are nothing but an annoyance. With MS experiences, you will soon find these things are just annoyances. I may miss a few calls, but I still enjoy God's creation. I may be unable to walk for a bit, but I can enjoy looking at His handiwork. Whatever comes your way, you can roll with it or allow it to stop your progress through life. As you gain MS life experiences, you will find that rolling with the problems is so much sweeter.
I think, at least for me, the worst experience with MS is simply not knowing what was happening- limbo. If you can make it through limbo, slow down and enjoy a bit of life!! Those missed phone calls, well, they can wait!
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Yes, I do take the time to enjoy the little things. And you're right JayHawk, the worst part is being in this limbo not knowing what is happening to your body. But sometimes I think not knowing what is wrong, makes you start anticipating or almost waiting for the next strange symptom to appear.
I realize how blessed I am though. Things could always be worse. As you stated before, these things I deal with daily are only annoyances. I work at an elementary school and we just received the devistating news that one of our students (9 yrs old) has brain cancer. Somehow my leg vibrations seem so trivial now. I'll just stop my complaining and use my time to pray for him. I hope you all have a wonderful night and sleep well. And if you have time....please say a little prayer for Aaron.
Just curious, does the vibration seem in any way related to your neck position? If you put your chin on your chest does anything happen?
The reason I ask is that I noticed vibration/sudden numbness in my body several weeks before I realized it happened when my neck bent forward.
to: lilc - No, the vibrations have nothing to do with the position of my neck. The vibrations happen no matter what my position - lying down, standing, sitting, walking. They honestly feel like my cell phone when it is on vibrate. They start and stop just as if the phone were ringing.
I did have a cervical fusion in 2005 and they placed a steel plate and screws at the T-5 and T-6 position in my neck. I did go back to the orthopedic surgeon for x-ray and MRI about a year and a half ago because I was having some neck pain and the vibrations occasionally. They said everything with the surgery looked fine but I have alot of osteoarthritis in my spine. They prescribed Mobic which I did take for a while but have stopped taking now because I am not having any neck pain.
Last Wed. is when the vibrations really came on full force. They just don't seem to be letting up this time. Before, they would happen a couple of times and then it might not happen again for a month or so. I guess they are just going to stay with me a while this time. I'm sure I will get used to it if they decide to stick around. I would just really LOVE to know what the cause is.
I am 57 and have your symptoms. 6 months ago i started vibrating!. I also am a vibronaught. I went to the neurologist and he sent me the the shrink. the shrink sent me back to the neurologist.to make a long story short, the shrink put me on busprine twice a day and ativan at night. when i wake up for from a nap or sleep at night, I still feel my body vibrating. the mad twitching that started about the same time has stopped. It twitching was all over my body.it started with my index finger going off all the time. now it 98% stopped. I would start with the compulsive thoughts every time i twitched or vibrated. I feel better than I have in ages. I really think anxiety is the greater part of it. I am afraid of going off the ativan and have all the twitching come back. I know I am obsessive compulsive. however it is not severe though.the vibrating was horrible. Just recently, my brother told me that his legs were vibrating also. he also lives with lots of stress and is a PHD botanist. he laughed when he said, nobody looks like they died from it so I guess i will be ok! The muscle twitching was in my legs, eyes, even tongue. I only get the occasional twitch now. I did not want to admit to anxiety, but the proof may be in the pudding. hope you are better.