Hi I'm new and on the undiagnosed roller coaster
Posted: Sun Mar 22, 2009 6:52 pm
Hi There,
I had posted this under the "general discussion" but thought it may be more appropriate here so please excuse me if you have already read this before.
Let me explain a bit about myself. I am a 38 yo man with a loving wife and 2 wonderful children. In 2004 i had a 1 off session. It started with a really strange sensation in my head. What followed was like a seizure (but i was aware of what was going on) and then like a stroke. I was unable to lift my legs and my face was paralised down my left side (can't quite remember how long this lasted). Then almost 2 years to the day i had another turn almost the same as the previous episode. after each episode i was very lathargic and not really with it for probably 12hrs and was unable to walk unaided. This time i decided to see a physician who proded and poked me all over and then told me there was nothing wrong and to have a glass of water when i felt this coming on again. Anyhow another 2 years passed again and i had a similar episode only this time it started with a stabing chest pain and then the seisure type episode. Well then 2 weeks later i had the worst sensation of a squashing chest pain to the point of not breathing. For me it felt like a boa constrictor was squashing the hell out of me. Ever since then i had numbness/pins and needles in my feet and hands, extreme fatugue most days, tremors in my left arm and at times i was unable to even walk or talk, it was as though i would just go to sleep standing up only i wasn't asleep. The messages just didn't seem to be getting through, if that makes sense to anyone. Here is the good part i had an MRI without contrast and it came back clear. I booked an appointment with a Nuro but by the time i got to see her, some 2 months later, all my symptoms had dissapeared. so i thought u beauty i should be fine again for another 2 years.....perhaps. Unfortunately i only had 2 months of relief and this time seems to be a lot worse. Aches and pain in legs and arms pretty much every day numbness in hands and feet. Too many squashing chest pains to mention, tremors in the left hand that range from just an anoying tapping to a full on bashing the table or whatever is there at the time. My upper torso will also uncontrolably shake from side to side quite fast at times and when that stops all is fine for a while. I have also had the muscles in my left arm spasm to the point of where it goes from being by my side to ending up behind my right ear and will then release. At times i will also have what i call a drunken state where my spech is severly slured and my balance is shot. I have run into doors and people, sometimes i will take 15 steps to the left then the same to the right, so to speak and then i will finally take 1 forward. I have finally managed to book a full MRI with contrast of head neck and spine. Oh and one other thing i get stabbing headaches just before a really bad thrashing episode happens. The last thrashing episode lasted full on for about 45mins and went from the squashing chest pain to being thrown out of the lounge chair like you see on the tv when they try to revive a heart patient. In between all this i had a terrible cough but i have not and still do not have any flue like symptoms. Does this make sense to any of you? To me ther seem to be a lot of similarities with MS and the docs have done a million bloods Lumbar puncture ct scans chest Xrays, halter monitors only to come back clear. Somewhere along the line i was sent to see a shrink as all the tests came back clear so they automatically assumed it to be a Psych problem. Anyhow i saw him and he was brilliant about the only Dr that has really listened and has refered me back to the Nuro. It seems like a lot of people with MS seem to go through the same heartache in getting their diagnosis. For me it has been 6 months with no work and a hell of a lot of symptoms. One other thing after the last full on seisure i have had a numbness/tingly state in my lips and jaw region, but this will come and go. At times it feels like something is crawling under the skin. Does anybody think this sounds like MS or am i barking up the wrong tree? I tried to tell the Dr at the hospital that i thought i may have MS but he told me there were no symptoms, especially as their touchy feely tests didn't show anything. Our family are just about at their whits end with all of this as it is all just taking way too long.
Thanks for listening,
Scotty.
I had posted this under the "general discussion" but thought it may be more appropriate here so please excuse me if you have already read this before.
Let me explain a bit about myself. I am a 38 yo man with a loving wife and 2 wonderful children. In 2004 i had a 1 off session. It started with a really strange sensation in my head. What followed was like a seizure (but i was aware of what was going on) and then like a stroke. I was unable to lift my legs and my face was paralised down my left side (can't quite remember how long this lasted). Then almost 2 years to the day i had another turn almost the same as the previous episode. after each episode i was very lathargic and not really with it for probably 12hrs and was unable to walk unaided. This time i decided to see a physician who proded and poked me all over and then told me there was nothing wrong and to have a glass of water when i felt this coming on again. Anyhow another 2 years passed again and i had a similar episode only this time it started with a stabing chest pain and then the seisure type episode. Well then 2 weeks later i had the worst sensation of a squashing chest pain to the point of not breathing. For me it felt like a boa constrictor was squashing the hell out of me. Ever since then i had numbness/pins and needles in my feet and hands, extreme fatugue most days, tremors in my left arm and at times i was unable to even walk or talk, it was as though i would just go to sleep standing up only i wasn't asleep. The messages just didn't seem to be getting through, if that makes sense to anyone. Here is the good part i had an MRI without contrast and it came back clear. I booked an appointment with a Nuro but by the time i got to see her, some 2 months later, all my symptoms had dissapeared. so i thought u beauty i should be fine again for another 2 years.....perhaps. Unfortunately i only had 2 months of relief and this time seems to be a lot worse. Aches and pain in legs and arms pretty much every day numbness in hands and feet. Too many squashing chest pains to mention, tremors in the left hand that range from just an anoying tapping to a full on bashing the table or whatever is there at the time. My upper torso will also uncontrolably shake from side to side quite fast at times and when that stops all is fine for a while. I have also had the muscles in my left arm spasm to the point of where it goes from being by my side to ending up behind my right ear and will then release. At times i will also have what i call a drunken state where my spech is severly slured and my balance is shot. I have run into doors and people, sometimes i will take 15 steps to the left then the same to the right, so to speak and then i will finally take 1 forward. I have finally managed to book a full MRI with contrast of head neck and spine. Oh and one other thing i get stabbing headaches just before a really bad thrashing episode happens. The last thrashing episode lasted full on for about 45mins and went from the squashing chest pain to being thrown out of the lounge chair like you see on the tv when they try to revive a heart patient. In between all this i had a terrible cough but i have not and still do not have any flue like symptoms. Does this make sense to any of you? To me ther seem to be a lot of similarities with MS and the docs have done a million bloods Lumbar puncture ct scans chest Xrays, halter monitors only to come back clear. Somewhere along the line i was sent to see a shrink as all the tests came back clear so they automatically assumed it to be a Psych problem. Anyhow i saw him and he was brilliant about the only Dr that has really listened and has refered me back to the Nuro. It seems like a lot of people with MS seem to go through the same heartache in getting their diagnosis. For me it has been 6 months with no work and a hell of a lot of symptoms. One other thing after the last full on seisure i have had a numbness/tingly state in my lips and jaw region, but this will come and go. At times it feels like something is crawling under the skin. Does anybody think this sounds like MS or am i barking up the wrong tree? I tried to tell the Dr at the hospital that i thought i may have MS but he told me there were no symptoms, especially as their touchy feely tests didn't show anything. Our family are just about at their whits end with all of this as it is all just taking way too long.
Thanks for listening,
Scotty.
