Yay Monte! I couldn't agree more! I'd like to here the many different symptoms that people are experiencing? are they working full time? I'm still working full time with SM and MS but it's getting harder each day. The pain in my legs and feet are almost unbearable most days. I cannot even get outta bed without a hand full of pills. I stay positive and I think that is what keeps me going! Back is always in pain. My syrinx covers the thoracic region of my spine and is 3mm

Liz ,I have been disabled from work because of the SM and DDD and bulging discs and migraines and the list goes on and on . I did try for several years to keep working but in the end it all got to be too much for me to handle and by then I was working for the US Postal Service in Colorado and my doc that found the SM told me that I should quit or they would be visiting me in the cematery .I even then fought it until my Postmaster came to me and told me that I needed to take a disability retirement and that was that . According to SSDI I can work but can`t make more than $400.00 extra a month ..WOOHOO..Who is going to hire me for that littl amount of hours, bexides that I have restrictions that I have to follow or I will be down and out for days because of pain, fatigue,numbness,and of course there is the falling thing ,you know falling while on flat groung syndrome . Plus I am so week all the time ......lol...lok at me going on......NEXT

hi monte, i joined this group to find answers and support and of course to give support if i can and was dissapionted with the lack of communication that i found here, i havent written much myself yet one reason being that i am still reeling from my diagnosis (i was only diagnosed in july )and i dont know where to start so i am going to start here in response to nclizd's reply. i havent worked since april as the pain in my feet and legs and the weakness had got so bad that i couldnt walk from the town to the car park so i said to the dr that i would have a couple of weeks off to rest but my symptoms got worse and worse, in june i was sent for a medical assesment and was found fit for work,my dr had just given me a paper for another two months,the lady in the jobcentre said to still send the paper in and appeal against the desision of the medical board so i am in the process of doing that,when i went to my dr the week after the medical (i hadnt heard the decision then) she sent me to a physio to see if he could help me i described all my symptoms to him he tested my reflexes and said there was nothing he could do as he thought my problem was neurological my dr had a report the next day and sent a report to the rheumatologist who i had an appiontment with the following week she sent me for an mri then another with contrast and diagnosed sm i have seen a neurosurgeon and he has ordered a brain mri which i havent had yet and he said he will see me after he's been to a sm convention in november he has ruled out chiari but wants to try to find out the cause of my sm before deciding what to do ,when i asked my dr recently if i should try going back to work she said definatly not,she and my neurosurgeon said they will support me in my appeal, as for my symptoms i have burning pain in my right leg and foot, numbness in both feet, tendonitis in my right ankle swelling in both ankles, electic feelings in my legs,i cant move my left foot properly i seem to drag it and this means i stumble when walking and have to be very careful not to fall, my walking pace is very slow and i used to be a brisk walker ,crushing feeling in my ribs, pressure in my back with breathlessness ( i am having an xray for this tommorrow )pain in my lower back and in my shoulder area my syrinx is from c6 to t8 i dont know how wide i have soreness in my wrists and elbows, stabbng pains in my fingers and arms i also get vibration in my spine which is very weird, nclizd what job do you do ? it must be hard with the ms as well. o i've rambled enough for one night, looking forward to hearing more, look after yourselves x

Agree with you Monte, we should all be doing something, bettering this group is a good goal and i will try to contribute :)

ceridwen , there are some good places to start looking for answers and one of these is smawarness.ca and download the SM and chiari patient hand book ,if you need help around that site you can ask NCLizD ,she is great at finding things and is very computer literate . Check it out and also try ASAP,org it is the American Syringomyelia Alliance Project and they also have some info and if you are in one of the better areas they might even be able to direct you to a neurosurgeon clos to you .
Just don`t let it get you down ,I know it is a very long and sometimes very painful journey . Believe me we have and are still going through it . I do hope that I have helped in some way . Take care and let us know how you are doing and if we have helped .

I agree Monte, thanks for the supportive spirit, its very uplifting to have others going through the same trials as you encourage you and understand the pain that your in. My SM was actually quite stable for a long time, t3-t10, and the numbness and pain was more of an annoyance an something I put up with because you feel like you have too, I took a tumble down some stairs in December and things seem to have gotten progressively worse, the searing and burning pain in my arms and legs is immense most days, getting up and down is painful for my back, although I do still work a full time job, some days I would rather just not. I believe things are progressing badly and cannot get the dr. to move on it so yes I am moving on to yet another one, maybe one who has compassion. We shall see.

Hi All,
I'm sorry I don't post here much or offer much information. My syrnix is small and I don't think it is causing any problems. I also have bad disks in the same area of the syrnix and I do get a stabbing pain that goes from my back and out my chest, so I don't know if it the syrnix or disks.

I came hear just to learn more, and since it is not causing any problems I feel lucky. I have other back problems that cause me more problems.

I don't had enough experiences with SM, so I feel that I can't offer any advice.

It is nice to know that there are people out there that can help me if/when I need it. Thank you!

Ita me agian , I just thought of something that everyone of us should do at least for ourselves . Go to this site smawarness.ca and if nothing else download the patient handbook for SM and Chiari . I am telling you it has some very good information in it about the do`s and don`ts . I know that even after I had my surgery not even the NS that I had gave me any kind of list for me to do or not to do . So do this for yourselves it will help you to understand what is or isn`t going on with you .
SailorJen , I know you said that you have SM and some bad disc in the same area . The thing is the symtoms that you discribe are what I would say is SM symtoms . But I am not a doctor so don`t take my word for it . If I was you I would get another doctors opinion and then you can maybe get the right treatment . I do thank you for your input , and your intrest . Don`t be shy join in anytime .

hi monte, i have joined the smawarenessca group and downloaded the handbook which i found very helpful.i will try the other site as well i am in the uk and i have only found one site here which my ns told me about but there isnt much going on there either. i hope you are feeling better today, look after yourself x

Thats just it Monte it is a serious illness and there is little education being done how many times have we all been to a Doctor or a specialist and they do not have any knowledge? We are all in the same boat... its unfortunate that Sm has so many symptoms that are also mimicked by other illnesses. MS is one of the main issues that SM also seems like however Dr's are more quick to give the MS diagnosis as they so much more about it until test results come back negative for MS. Also in order for this site to get moving response time has to be quicker not only by the person asking the questions but by people answering the questions... I know on ask the expert the response time is terribly slow or they post about other issues that do not even concern us.. lets face it on this site there are not enough Experts to cover all aspects of the site let alone all the questions they have to answer.... that is why I directed you over to the SMawareness site there the memebers make up the bulk of the responses and the turn around time is far superior to here but for someone who is new to blogging this site is a good first step or at least a way for them to get familiar with their own illness but for those of us who want to go that step further who have not received any answers the only thing to do is dig for more those with a thirst for knowledge or those who just want a better understanding are going to go deeper. As one person the voice is small however if we band together our voice will be loud and clear its just a matter of making our voices heard and it will take all of us here doing the same thing to get this going

Lori ,once agian you have nailed it ,we have to be able to make ourselves heard . Maybe it take all of us ask the expert the same or simular questions about Sm . I don`t know , its worth a try maybe we should . What does everone think ? It is so frustrating to go to a doctor and find out that you are basicly waisting their time and yours when they don`t know anything about SM .But out here where I am that is what I have to do in order to get the meds that I need just for pain , and that is not even doing any good because there are just not that many NS or even neurologist out here . I did find some doctors that are 100 miles away but I don`t know anything about them and none of them was recomended by the NS that did my shunt surgery . So do I take that chance once agian ? I say that I have to in order to maybe get something done . And as you know I am a member here at DS and at smawarness.ca and at ASAP.org . I know that there are other places to go but these are supposed to be the Best of the Best ,but it can`t hurt to look anywhere in order to find the right kind of doctors and treatments for us .

Im new and honestly not on the internet much, but just reading what people have to say and knowing that I am not alone has already helped me a lot in one night. I will communicate, but it may not be right away.