Hello Ellen.
A lumbar puncture is not a definitive test for MS. It is unlikely that your neurologist would order one if many other tests are negative.
Have you had a brain MRI?
I have Restless Leg Syndrome, and you can indeed experience it's symptoms during the day. Have you had a sleep study done?
Your symptoms sound very troublesome, and if you don't feel like your neurologist is helping discover what is going on, then ask your primary care doctor who they think you should see to further explore all that is going on with you.
I wish you all the best, take care.
Kathy
I have had many brain MRIs since 1999 due to having a grand mal seizure ten years ago. My neurologist always tells me they are fine. I have not had a sleep study done. I know I just need to quit worrying about it, but when you have this feeling 24/7 for several months now, it is quite bothersome. I just had my yearly checkup and all of my blood work is normal. I want to trust my doctor, but several times he mentions stress. I don't feel like I am stressed, except for feeling this way. When other doctors ask me who my neurologist is, and I tell them, I am always told, he is wonderful and so smart. I don't know what to do. I am thinking of going to Mayo Clinic. Thanks for your response.
It might be a good idea to get copies of the result of your tests.
I know how it feels to have unexplained sensations and have them written off as stress; not good at all!
If you think there is a real possibilty that you have RLS, then a sleep study is a good idea. I started taking Neurontin after I was diagnosed with RLS, and the feeling of needing to get up and move, of ants marching under my skin, went away. I was able to sleep better, and aches and muscle tightness got better.
Oh, my RLS should read Restless Limb Syndrome; it affected my hands, and arms, too.
I have a L4-5 disc herniation, but the rest of my lumbar spine is such a mess that surgery isn't really an option. I have referred pain down my right leg into my foot.
As for the getting stressed out about it all, I try to meditate, to make sure that worrying isn't making things worse. There are many forms of meditation, many quite simple.
I don't care if a neurologist is supposed to be the best; if he isn't helping you, then he isn't the best for you.
good luck,
Kathy
I had restless leg syndrome on and off, and you're right, it shouldn't be called restless leg, cause I also get those same feelings in different parts of my body, including my scalp. Could you tell me what exactly RLS really is, I don't think I ever had a dr explain it to me. I think I may have ms, at the beginning phase of a dx. I also have Fibro, and was told it is from that. But what's the medical definition for RLS?
I just picked up copies of my mri's that I have had done over the past and the last one has this written - " On T2 FLAIR images, there are one or two nonspecific frontal subcortical white matter bright foci identified, felt of doubtful significance. These were not identified on previous examination. No other signal intensity abnormalities are identified. Contrast was not infused." My question is are white spots that pertain to MS easily identified. I have read so much on the web and now am so confused and scared. I am still having the tingling in both legs below the knees and on bottom of feet almost 24/7. Sometimes I get it in my hands. I have noticed in the last two days that my hands ache at the knuckles when I bend my fingers. I do not want to have a spinal puncture test. Is that a must to diagnose MS? Thanks for all of your help.