I hate that question at the doctor every time... "what type of pain is it burning, stabbing, throbbing?" I don't know!! I never know what to say to that. It's all and none of the above. My pain is just there. What do you say? Sometimes it feels like I'm being jabbed with a knife, sometimes bee stings/bug bites, tightening pain? Pain in my legs now is like somebody is sliding a hand under my calf muscle and peeling it off the bone... but squeezing it too. I just don't know what to say anymore.

So frustrated with all of this. Some days even I have pain but then I'm not 'sure' about it. I don't know if that makes sense. It's like I'm getting so used to the pain I'm just not that aware anymore of it.

Also being asked the degree of pain 1-10... well, I don't know what to say there either. One moment it'll be hmmm, a 4 but then the next it's a 9. Then, try and think what I'd gauge it before all this hell started and can't tell.

Frustrated and losing hope that I'll ever know what is wrong or get a diagnosis. I don't want to live the rest of my life like this with no answer. Just a fog of pain and fatigue. Seeing doctors who I feel aren't listening or don't believe me.

I've been tested for everything under the sun and it all comes back 'normal'. My MRI's are "pretty good", one lesion but only comment ever made on that is that it isn't conclusive. Is it wrong to want a new MRI at this point and hope it's full of lesions just so I have an answer? How warped is that?!

Its not warped. You just want answers. I have numbness, but can feel pain at the same time. Normally when you think of numb, means you cant feel right? I have a thing where I can feel the outside of my leg, but the inside of my leg by the bone I cant feel it. Neuro explained stuff about different nerves being on the outside of the leg from the inside of the leg.

MS is a very difficult disease to dx. As far as describing your pain, I can sympathize. Ive been there, still am there. Sometimes feels like pinching or a pin being dragged across your skin, etc. You just have to describe as best you can. We've all been there.

Sometimes I just throw my hands up and say I don't know how to describe it doc it just hurts likes you know what. Sometimes you have to average out your pain. Like on average what is your pain like, make sense? That's what my neuro has me do. Not what your here and now is unless your here and now is quite painful.

Are you seeing an MS specialist or a regular neuro? What tests show now may not be the same in 6 months. Keep fighting for yourself. You know your body better than anyone. Lots of support here. Hang in there. We're all here for you.

Perhaps the answer is there is no answer. When I taught children with a variety of problems. my principal used to tell me, don't look for reasons or names, deal with the symptoms themselves. Vicodin doesn't do anything for me (No pain relef or high or sleepy), yet Advil (OTC) does relieve pain. Evderyone is so different. As my psychotic student would say after he stole a teacher's reading workbook answer book, " Answers may vary" for some questions.

I just average out the pain level when the nurse asks me, and I don't think the doc looks at what she writes down. I don't go to a neuro any more, my doc is a hematologist for another disease, and he basically looks at my blood test numbers and tells me to come back in two months. He is just monitoring the progression or non-progression. He does complement me on my bright colored clothes, however (I wear Solumbra cloth clothing in either black or raspberry colors, to keep sun out--they are SP 100. I get lesions if I do not block the sun. The doctor likes the raspberry clothing.

I also have a hard time describing pain, but I've decided it varies from time to time from stabbing to the long ache of spasticity. So I just tell them that, it varies from time to time. But it's not the hematologist I discuss that with, it's my pcp, who is my best doctor. The only neuro who really helped retired years ago, and I haven't seen a neuro since then, as I can't take the MS drugs anyway. I find the Swank diet, rest, rubbing out spasticity, and the supplements like magnesium which the good neuro told me to take for spasticity and jerkiness, are the things that help and no neuro would help me now anyway.

I think you're right Mariel. I'm not so convinced the doctor looks at those papers the medical place makes me fill out. He certainly never mentions them to me unless there is a specific problem! I average the pain, fill in the child scale of happy to sad crying faces and DH and I giggle over them. BUT my doctor responds to me in person, through hit or miss by him and me I've got no pain (found it was slight positional changes) and medication trying, failing, oh this one helps - have gotten us where we are. There is no exact science to all this MS stuff I think.

I think you're right Mariel. I'm not so convinced the doctor looks at those papers the medical place makes me fill out. He certainly never mentions them to me unless there is a specific problem! I average the pain, fill in the child scale of happy to sad crying faces and DH and I giggle over them. BUT my doctor responds to me in person, through hit or miss by him and me I've got no pain (found it was slight positional changes) and medication trying, failing, oh this one helps - have gotten us where we are. There is no exact science to all this MS stuff I think.

I would suggest keeping a little pain diary or log. When you have these weird pains, write down a good description of them, the time, date, how long they last, if they move or change, etc. and what you were doing when it came on. Use your own imagery or description, but do try to describe it beyond "it's just there" because you are the only one who can describe it!

Thanks everybody. It helps to know I'm not completely crazy. I did keep a journal for months, the doctor took it, made a copy and then I find out it's not on my chart and it wasn't really read so just stopped doing that. Seemed all it was doing was giving my hubby something to read and stress over.

Got my appointment, which was going to be end of November, moved up to October 1st... so just a few more weeks and praying will get a bit farther to an answer...

I think your descriptions were great! Pain is personal to us all. I have a typical pain like a squeezing of a muscle or some times a dull ache. I like to call the ache akin to a toothache in my ear or eye or leg. My husband always makes fun of that analogy, but it works for me.