Hi I'm new and on the undiagnosed roller coaster

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Hi I'm new and on the undiagnosed roller coaster

Postby scotty » Sun Mar 22, 2009 7:52 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.
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Postby jimmylegs » Mon Mar 23, 2009 5:42 am

scotty that sounds like a terrible run. are there any other kinds of illness or what seem like minor health troubles you've had in the past, or that run in your family? what's your daily routine like, prior to anything painfully obvious starting to happen?
i can't believe your docs sent you for counselling. that is ridiculous. i have a feeling the tests they've run are far from exhaustive.
i read nutrition research and have been trying to piece things together from relevant literature for three years now. that's all i can offer but you might find some info useful. it has helped me and some others. you can let me know if you are interested here, or send me a private message.
cheers :)
JL
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Postby scotty » Mon Mar 23, 2009 4:08 pm

Thanks JL,
My life has been rather boring to be honest no health issues with anybody in our family hardly even a flue... until this. I did not even really have a Dr until all this started. As far as my daily routine, i have been unable to work since Oct 2008. I have 2 trades and am a trade teacher at our local TAFE not sure if you have a TAFE but basically my responsibilty was to look after the trade training of approx 80 apprentices. Any how i now take each day as it comes and rest when required. On sunday the only physical activity that i did was to spend about 2 hrs training a couple of horses and that just about rolled me. By the time i was finished i was stagering around like an old drunk and my tremmors were that bad that it took 2 Valium to calm me down.

As for the counselling we thought it was rediculous also, as like you, we believed that they had not exhausted all tests. It was just that the tests that they had done all showed nothing and that they were probably all the routine tests.

I would be very interested to hear of the nutrition side of things as there is certainly nothing too loose. We live on a farm and so am keen to get into growing fruit and veg organic if possible as it has to be better in the long run.
Thanks again,
Scotty
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Postby cheerleader » Mon Mar 23, 2009 5:02 pm

Scotty-
Did you have an MRI of just your brain, or did they do the spine as well?
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby scotty » Mon Mar 23, 2009 6:52 pm

AC,
MRI of brain only, and without contrast. I have now booked head, neck and spine with contrast. I am hoping this is the correct thing to do. From the little bit that i know many of my symptoms may be spine related especially the "Hug". The initial MRI was done in Nov 2008.
Thanks,
Scotty
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Postby cheerleader » Mon Mar 23, 2009 9:40 pm

scotty wrote:AC,
MRI of brain only, and without contrast. I have now booked head, neck and spine with contrast. I am hoping this is the correct thing to do. From the little bit that i know many of my symptoms may be spine related especially the "Hug". The initial MRI was done in Nov 2008.
Thanks,
Scotty


Good for you, Scotty. The MS hug is related to the diaphragm and can be caused be lesions on the cervical spine- we've learned this w/my husband's MS. I think these new MRIs will give you some answers and help with diagnosis-
I really hope you find a medical team to help you thru all of this.
best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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results from telemetry

Postby scotty » Thu Apr 09, 2009 2:29 am

Hi Guys,
I had a "telemetry" last week to see if any of my symptoms including tremmors and seizure like symptoms inc. what i believe is the MS Hug were in fact brain related. Guess what another test bites the dust. Nothing to report. The bad part is is that the Neuro that referred me for that test phoned back to tell me there was nothing they could do for me and that i had to see a shrink. I have seen one twice reciently (just to satisfy them) including yesterday and he is of the firm belief that there is something medical causing my symptoms. Looks like i was lucky when i also took the liberty of booking a full MRI and 2 other Neuros as a back up plan.
Thanks guys,
Scotty
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Postby peekaboo » Thu Apr 09, 2009 12:40 pm

Good for you being proactive and getting full mri,s and back up neuros. I have MS HUG and severe spasticity on the lower half of my body. Upper body weakening arms, cognitive issues...memory, fogginess etc. I have lesions in all 3 places...and i am still alive keeping a sense of humor and not giving up. Depression is a companion with ms'rs at times and i do take an anti-depressant. the only reason for you to see a shrink is to prescibe such rx.

see you in the forums Holly
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Re: results from telemetry

Postby Lyon » Thu Apr 09, 2009 12:52 pm

.
Last edited by Lyon on Sat Nov 26, 2011 1:46 pm, edited 1 time in total.
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Quality of MRI

Postby scotty » Tue Apr 14, 2009 4:07 am

Hi Lyon,
I am not sure about the MRI machine that will be getting used but i presume that it probably won't be "state of the art" seeing as it is a mobile MRI machine that tours 3 regional areas. I have read that the quality of the machine can make a big difference. I live in a regional area but am prepared to travel if it means getting a diagnosis. There is a training hospital linked with a university in Melbourne 3 Hrs flight away and i am seriously considering trying them as i am not getting much progress where i am.
Cheers,
Scotty
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