Sooo nobody wanted to talk to me on my last post.. thats quite alright.. i don't get on here enuff to care much so i will just say that i have read some of your alls stuff! annnnd... well sounds like we all have a huge range of symptoms... and I can tell you that no doctor i have seen has actually "treated" anything or even acts like its a big deal or believes me. they blame "anxiety" on EVERYTHING... I wish I never had the "mental" stigma to go along with all the other medical problems.. my neck and back are quite twisted.. no enuff to call scoliosis apparently.. but it makes me quite miserable. but i can take it. im not in unbearable agony.. at least not most days. limbs get weaker and weaker.. hands get harder to grip.. lots of tingling.. chest/respiratory probs to go with. but my syrinx is so small my neuro says that he doesn't believe it causes anything at all.. what a dummy. anyway... i see some of you have the tingling in the legs too... no one could tell me why except that maybe it is from Raynauds... which i was never even correctly tested for. and there are tests... research it. but anyway.. i don't ask for pain meds.. altho it would make life more bearable i think.. but could lead me down the wrong road, ya know.. and DRS won't prescribe them to me anyway.. lol... whatta ya know. so there it is. seems like i suffer alot of same stuff as some of you.. drs seem to suck.. and i just barely make it day to day... and no one seems to care.. sleeping is a bitch.. sleep is great. but not when you can barely stand to lay.// PAIN. toss n turn to keep from any and all parts of my body falling asleep... that sucks. light headness all the time.. spells of almost passing out.. but i was just told i am sensitive and unique and i have a lot of quirks... GREAT HUH????? SORRY i'm using this more as a rant than as a means to actually get answers.. cuz i realize there are none anymore unless my syrinx gets bigger and they wait til i can't use my arms or legs or my nervous system no longer works to where i can't breath on my own or heart stops beating.. then maybe they'll try to take me seriously...haha Nothin they can do but surgery and that could make it worse... yayyyyy... ok.. so im off here.

Sorry no one responded to the last post. I think most of us don't get on here much either. Since it is 'rare share' it's not like people post all the time. I understand your rant and I don't blame you. I have a few rants on here as well. The doctors I've had all suck. They don't understand nor do they care to understand. Only one of them has told me the truth by saying it was out of his scope. At least I can wrap my head around that. The others are full of shit. My legs are getting worse, they feel like lead balloons walking up stairs. Down is ok. Recently my headaches are getting worse too. Daily for sure and sometimes multiple times in the day. Sleep, what is that? So I just keep going. I suppose until I can't anymore. I share in your frustration, for whatever it is worth. And I do hope that you find some relief. If you do, let us know what it was!

I did want to add to my rant that vertigo is starting to really get bad. Anyone else with that issue?

EnlightenMe, how old is your neurologist? The first one I had was in his early fifties and kept forgetting why I was coming to him. He thought I was only being treated for headaches. My new doctor is very young and he understands much more. He realizes that the size of the syrinx can change daily, even hour to hour. He told me that there is an overall trend that he continues to watch, but my symptoms will vary according to the size and location of the syrinx that day or hour. I have found out that I will have a bowel control incident, if I have picked up one of my grandchildren the day before. But my syrinx is getting smaller in general. As far as the pain goes, gabapentin helps block nerve pain and is not narcotic. It is hardly toxic to humans and I am almost unable to walk without it. I am like Gabrielle, my legs feel like lead with out it. It also makes the pain bearable most of the time. I take the largest dose allowed. You are going through what we all go through. Because our symptoms come and go, change from one thing to another and affect so many parts of our bodies, it is easy for the uninformed to write us off as someone with mental issues. So far, that hasn't happened to me, but I know it has happened to many others. I am so sorry for your pain and lack of finding a knowledgeable neurologist.

Cendriah, I'm glad to know I am not the only one who's legs feel so weighted. I have a hard time explaining that to any of my doctors. The last neurologist I seen, she was young and she did offer me the RX you mentioned. I didn't take it. I am trying to not take any meds. I would love to find a way to be somewhat whole again without them. I do realize I am not a kid anymore and age is going to take it's part, but I see plenty of people my age able to do so many things I can't do anymore. I use to be a runner and so this is hard for me. I wish all of us best of luck as always.

I try to take as little medicine as possible also, that is why I like gabipantin. According to poison control, when I accedently took three pills at once, it is almost nontoxic. All they told me to do was to skip my next dose. It makes the difference between being able to get up every day, work and live my life. I can enjoy my grandchildren! Before, I would maybe be out of the bed three days a week. I was also imbarassed to go to restaurants because I never knew if I would be able to walk when I got up. Or if I would be able to walk normally, or at least normal enough to not draw attention to myself. Don't be surprised if some day you stand up and your legs won't move at all. If I forget to take one of my pills, my legs simply won't move. Or sometimes they are simply too heavy to lift. I am sorry you are having these problems. It is not easy to live with.

I have read your posts and I hear you. I have only had sm for almost 2 years. I now suffer most symptoms and my life is miserable. I got my pain dosage upped so now I'm not feeling so nauseous but now have IBS, my entire right side is one big aching,throbbing,stabbing, numbing mess. I KNOW all the doctors I am seeing cannot comprehend what we SM patients are really going through. I hate taking pills !! but have learned that if I don't I will really hurt. I can only work part time and I'm still waiting to get s.s. disability so I no linger have internet and go to the library 2 blocks from my house, and as we all know there are alot of days when we don't (can't) go anywhere because the pain is too much. I try to just stay positive and tend to not let people know how much pain I am in, oh... guess my gimp doesn't help !

So sorry to hear about your SM and the waiting on SSD. Not do we have to live with all the pain and problems SM causes but we get to have added ones from our wonderful Gov. playing games with our money. But if I would tell them I couldn't work because I can't be around more then 10 people at once they would gladly give me all the money they could afford. Hope things get better for you soon. God bless