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I probably shouldn't be here...but if anyone can help me...

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  • I probably shouldn't be here...but if anyone can help me...

    It all started 15 months ago when I was packing to move. The first sign something was wrong was when getting ready for work one day...my vison started closing in like a white light and then got a semi-migraine.

    Next was the leg and foot cramping which went on for weeks. Next my feet swoll...at this point I went to a DR. who gave me water pills. Swelling went down. However then my legs started to feel really bad like bugs crawling on them for weeks. I finally got moved and then my back went out...I could barely walk for a couple of weeks. When the pain of that went way I began to notice that my legs had this TERRIBLE, painful, freezing sensation if I sat too long or stood too long i.e. 20 minutes. I am now at the point where they are going numb. I notice if there is pain in my back the freezing isn't so bad but if there isn't pain the freezing is awful. I went to a neurologist appointment I have waited 4 tortuous months for (months between specialists here) ....and he said I have neuropathy...my feet are not responding..however..the pain down my lower back to my legs is causing me to limp also...he prescribed Novo-Gabapentin which is something similar I think to Lyrica which did nothing for me... I am soooooooooooo frustrated that after 15 months...I am getting worse...and work life is hell..sitting at a pc - I just can't take much more...I feel I am also losing my balance while trying to walk or...these days...limp..tremendous pain from lower back to knee and freezing from calf to feet and now spreading to other areas..arms..chest...hands...face. I have had a hundred tests and the neurologist said that a protruding disc in my lower back could be pressing on a nerve causing sciatica...but has nothing to do with the freezing and numbness in my legs...I waited so long for this appointment...and I feel...it was all for not. I felt I was waiting for Santa Claus and all would be granted. Who do I turn to now...and how friggin long will THAT take????

    So far after 9 days on these pills...nothing has changed. My knee (which I have always had bursitis in since an injury in my 20's) is in pain now..I think it's swollen. I am wondering what kind of tests I should ask for - had back MRI, xray, every blood and urine test on earth, doppler ultra sound, EKG, - I can't remember them all. Been to a cardiologist, Dr of Internal Medicine, Neurologist...and here I sit over a year later getting worse...I feel like I am going to lose my legs if something isn't discovered...and there doesn't seem to be much interest in Canada to people's situations...there just aren't enough Dr's and the wait time between specialists is months...if I have cancer...I am doomed.

    I called the Dr. and said that the Gabapentin wasn't working at all...he simply said to increase the dosage from 2 pills twice a day to three twice a day...after 2 days - no results...I am still limping...and my legs and feet still feel frozen on the inside. Every now and then I feel a rush of heat...like blood is flowing through a vein...I love that 5 second feeling however fleeting. I feel like I am going to become crippled...I am starting to trip and stumble...and the only thing the pills do is make me tired and unfocused.

    I feel somebody must know something...I can't find anything on the net about the sensation of freezing inside the legs...and the Drs just give pills to try and comfort the pain...without finding the cause - which could be getting worse and causing more nerve damage. I know most of you may be laughing at what may seem like such a minor thing considering your situations...I am just so upset I have to try and find something somewhere...I can't live like this...let alone work....I am beside myself with the health care in Canada and the possibility that something really bad is going on and no one can find it....or cares to. So here I am..at Care...because I thought you might.


  • #2
    Neuropathy? Do you have diabetes? Have you been tested?

    Have you had an MRI of your spine?

    I'm going to move your post to the 'catch-all' for non-traumatic spinal cord injuries and ask someone qualified to read your post. Wish you luck!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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    • #3
      Thanks

      Thank you
      Yes I have been tested for everything. Dr. says its neuropathy - but I feel its something in my back that I injured lifting heavy stuff when I moved. He says a disc is also bulging and may be hitting a nerve...but these nerve pills aren't working a bit...so I have my doubts its a nerve problem. He says that the back thing and the leg thing aren't connected. But it all started at the same time.

      Thanks for putting this in the right forum - I didn't know where to post.

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      • #4
        Does freezing mean cold or stuck, not moving?

        Mary RN
        1FineSpineRN

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        • #5
          Hi
          no..it means my legs feel like they are in a bucket of ice or standing outside in the dead of winter with a windchill of -30 with shorts on - a painful kind of freezing - like there is no blood running through my veins. It's hard to describe.

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          • #6
            You mentioned moving. Why did you move? Was it a happy move? Where did you move from and then where to?
            1FineSpineRN

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            • #7
              I moved from one garden home to another bascially in the same area - a few miles apart. It was a happy move except for all of the lifting - I have had a bad back since I was 23. This move threw it over the edge. I was lifing air conditioners and stuff and it was non-stop repetitive lifting and packing. I am single and had no man - "strong like bull" - to help

              I am wondering if you think this is psychosimatic?

              The Dr. of internal medicine I went to see (which I waited months for also) is also a teacher at a university here. He walked into the room with 2 students and began quizzing me on my mental state - I got the impression he thinks everything is in the mind - well no - it's in my back. I got the feeling he was trying to impress upon his students that everything is psychosimatic and basically sent me for some blood tests and called it a day. The student stood there with there heads lowered as if to say "you're screwed".

              The Cardiologist in town I was sent to prior to that - also associated with that university (which I waited months for) basically felt for a pulse in my upper leg...called it another day...and said I was too young to be seeing him.

              I wait months here in Canada to see a specialist only to be extremely disappointed in their lack of interest or concern...not one of them has ordered a test or cared to delve deeper,

              Going on 16 months now..and today was a particularly bad day...legs frozen more than ever..feet numb...fingers numb...despite the suggested increase in gabopentin and I had deadlines....I have to keep stationary at the pc to meet these...it's too much. I keep my legs on a heating pad at work...it helps but not enough. I am choked up all day and can't wait to get home to cry and just release the anguish I feel...it's just getting worse and I don't know what test to ask for or where to turn to...I feel I am drifting in a sea of extremely bad health care...it's not the Doctors...its the system. They are overworked here and the wait lists are extreme. I am just a number to get out of their way.

              sigh It's not psychosimatic.

              Comment


              • #8
                do you mean that your legs feel cold to your perception, but when you touch them they not really cold to the touch? If that is the case, then it could be a nerve in your back causing the feelings of being cold. My hand was freezing cold to my mind, but was not really cold temperature wise. I had the pressure on the nerves relieved by a surgery, and that feeling is gone. Be careful with the heating pad. It wont really do any good, and may actually burn you if you have neuropathy. Neuropathy causes alterations of perceptions sometimes in hot and cold sensations. Find a good neurosurgeon, or have a neurologist do EMG studies of your legs.
                Anything worth doing, is worth doing to excess

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                • #9
                  What medicine did you take before and along with the gabapentin? What exact dosage of gabapentin are you taking?

                  No I do not think its psychosomatic per se. I do think that there are genuine issues being exacerbated by stress and even a little well deserved depression. That makes everything worse.

                  Tell me, if you were to lay flat on your back on the floor, and place your feet flat on the floor, could you easily perform a bridge, where you raise up your hips even with your thighs up off the floor without bending your back? Or is it a struggle? Try it if you can and, let me know.
                  1FineSpineRN

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                  • #10
                    I feel my legs and feet are freezing to my perception...even in a hot shower I reach down and they are frozen despite the hot water. When I get home from work I put my legs on a heating pad also...and it seems despite the heat...my warm hands..feel frozen feet and legs. Last winter was awful..I would come home and try to heat my legs up..took forever...very hot heat from the heating pad....say after 20 minutes...and they were still frozen..and to my hands they were too...it's very painful. I am beside my self and dreading winter...today here was cold outside...the legs went crazy.

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                    • #11
                      Duramater: I took Lyrica only for a few weeks - months ago - it had no affect - and I must say after only a few weeks on that I called my Doctor asking if it was ok to quit..upon quitting it - I could not sleep for 4 nights.

                      I take no other pills.

                      Just went on Gabapentin September 24th...1 (100 mg) capsule twice daily for 3 days then...2 capsules twice daily...then I called the Dr. after a week saying it had no affect - only got through to his assistant/receptionist's voicemail...she replied a couple of days later saying the Dr. said to increase the dosage to 3 pills twice a day.

                      I tried what you suggested. I couldn't do it. Severe pain in left leg.

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                      • #12
                        Have you been examined for multiple sclerosis? I have met several people that have the diease and have similar symptoms. Please don't think I am saying you have it but the spasticity does something to the nerve endings. My friend is actually numb all over. You can pinch him and he doesn't feel it. My husband has neuropathy and has tried Neurontin (gabapintin) and it doesn't touch it. His sypmptoms aren't numbness but burning and aching. Bless your heart, I know its hard not feeling well.

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                        • #13
                          Thank you bryantx2. I am not sure what I have been examined for...over 15 months..so many tests..no results.

                          I would just like someone to tell me what tests to ask for now. It seems here in Canada if you don't push it nothing will happen..yet I find that hard to do ..as I am rather intimidated by professionals.

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                          • #14
                            You can call me Mary.

                            Do you have access to a doctor of physical medicine there? Are you able to arrange some physiotherapy for yourself?

                            I do not think there is much chance of MS going on. MRI of head will rule that out. I think if you could get an appt with a physio, you should ask to be examined for SI Joint Disfunction and Piraformis Syndrome. I would expect that as a result of your moving, you may have brought your Sacroiliac joint out of alignment probably now on both sides. As a result of that, perhaps your piraformis muscles have clamped down and balled up sitting directly in the sciatic notch where they may be clamping down and impinging the sciatic nerve.

                            In theory this could give you all levels of neuropathy for no apparent or good reason. EMG (electromyography) would possibly show something and possibly not. I think MUCH of what you may be experiencing is really muscle related, with some neuro involvement, not because of a spinal issue but because there is muscle spasming impinging your nerves intermittenly.

                            I am guessing you need to get some help with range of motion and stretching, and some alignment work. If you do this, that ability to do the bridge will return, and your pain will minimize. I am sure the pain you have is perpetuatiing more and more. Does it seem like any of this might help you ...do you think its work investigating? This is near imposible to guess over this medium.


                            I do not think your headache was related.

                            Best Wishes,
                            1FineSpineRN

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                            • #15
                              Originally posted by FrozenGirl
                              I would just like someone to tell me what tests to ask for now. It seems here in Canada if you don't push it nothing will happen..yet I find that hard to do ..as I am rather intimidated by professionals.
                              Don't be intimidated ... it's YOUR health care system. You're in charge of your body ... they're only there to recommend. I understand what you're saying though ... the onus is on the patient.
                              Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                              T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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