I think i may have the dreaded MS

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I think i may have the dreaded MS

Postby scotty » Sun Mar 22, 2009 5:58 pm

Hi There,
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 mrhodes40 » Sun Mar 22, 2009 6:07 pm

Gosh Scotty if you go through this general forum and read all the help I am so scared or just diagnosed or is this MS threads you will hear your story over and over. It takes on average 2 years to be diagnosed because it is not straightforward.

something like 200 people a week are diagnosed, yet every doctor think itis not their patient that they are looking at that has it!!

In my case it took me leaving my little hometown and seeing a doctor who did not know me already (and who therefore did not think I was a "hypochondriac" to start with-I had so many complaints like you !) and THAT doctor made a neurological appointment THAT DAY.

Good luck and we will be here for you if you need us
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Postby scotty » Sun Mar 22, 2009 6:38 pm

Thanks for that. I just cannot believe that for such a common illness the Drs are not starting to wake up. To me they seem very liable when they straight out tell you that there is nothing medically wrong and that it is a Psych problem or that they fumble around doing test after test instead of doing the full on MRIs etc in the first place. Our family are just so frustrated with this whole ordeal. We don't care what it is just give it a name and let us move on.
Thanks again, this seems to be a great site for support and info.
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Postby skydog » Sun Mar 22, 2009 8:36 pm

Scotty I went for four years of exactly what you have described. Not until I actually stabilized some did get a positive MRI. Too late for the early disease modifying drugs to be very effective. My advice to you is this. Take the helm. You set the coarse and stay focused on getting what you want done now. Read as much as you can about what others have experienced. Keep positive thoughts at all times. Wish you the best. Mark PS Find a Dr. that will listen.
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Postby scotty » Mon Mar 23, 2009 3:16 am

Thanks Skydog,
What do you mean by stabilized and what MRIs did you have done? Do i need to persue with contrast or does that not matter? Seems also the quality of the actual MRI machine can play a vital role in the diagnosis. How many MRIs did you do before getting diagnosed?
Thanks again,
Scotty
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Postby sou » Mon Mar 23, 2009 5:07 am

Hi scotty.

My thoughts are with you.

Have you had any personality changes over these years? Were those 2 year "pauses" 100% symptom free? Not even a trace of jerky movements, depression or aggression?

I am asking out of curiosity only. Some of the symptoms you describe seem to resemble symptoms caused by cervical spinal lesions. However, these lesions cause an additional large scale numbness throughout the body.

Jerking movements originate from sensory neuronal nuclei. These circuits, if damaged, report the position of the muscles erroneously, which fires up reflexes that attempt to correct it. The thalamus is the part of the brain which all sensory information is gathered from. Perhaps there is some kind of malfunction there?

Could you schedule an fMRI (functional MRI scan) or PET scan to rule out the possibility that there is some functional malfunction at the thalamus?

I am not a doctor. I am not even close to one. I am just thinking out loudly. Ask a neurologist about whether all this makes sense or not.

I wish you good luck. And get well soon!

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby skydog » Mon Mar 23, 2009 11:26 am

Hello Scotty
Your story is almost identical to what I was experiencing in the early days. When I was thinking MS and Dr's and others were thinking pinched nerves Stress ect. The many physicals, blood tests, x-rays, stress tests revealed nothing. Some of the symptoms you describe I was feeling over seven years ago. Different shooting pains, burning feet, tightness in the chest, uncontrolled tremors. By shear determination I would press on with my twenty four seven life style. The biggest change for me came when all the crazy things my body was doing stopped and became the same, or as I have said stabilized. Everyday the same Drop foot fatigue and heat intolerance. Aside from slowly getting physically weaker this has changed little in the past three years. I was fortunate to be able through a naturopath and a close colleague of his ask for a full MRI. There was a cancellation just prior to my MRI and the tech used the extra time to really do a thorough job. The technique used was a sagittalt1, axialflair, t2, diffusion with ADC map, gradient echo, and cornal t2-weighted sequences without contrast. Without going into great detail the Dr. who first read the MRI had these brief comments. 1. Scattered foci of T2 hyperintense signal whitin the periventricular and subcortical white matter with involvement of the corpus callosm and callosal septal margin. In the appropiate clinical setting , multiple sclerosis be considered highly. 2. No evidence for restricted diffusion to suggestt active disease. There is mild T2 shine through involving the largest lesion within the left periventricular white matter measuring 7 mm. First read 05 25 07. When I presented another neurologist with my MRI showing what appeared to him as the aftermath of a very active stage of the disease. He said whatever you are doing now keep it up. Only thing he could offer was the drugs that for me came with too many side effects. Limited funds keep me from spending too much more on tests or MRI at this point. If you have the means ask for all you can. Arm yourself with a good baseline. There are more here on this site with greater knowledge about current testing than I. Don't be afraid to ask. Were all here to help. Take care and keep a positive outlook. Really Appreciate what you have and it can only get better from here. Peace and health Mark
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Postby scotty » Mon Mar 23, 2009 7:17 pm

Hi Sou,
To the best of my knowledge things were pretty much symptom free. I would not say that i was free of depression as i am sure we all are at times but certainly not more than normal. I am very easy going and no there was no aggression (only lately towards these dumb ass Drs who won't listen or think outside the box). For quite some time though i have had pins and needles in hands and feet on and off but never took that much notice as a symptom on their own.

The other info that both you and Mark have provided me with is way to technical for me at this point (and will need to do more research) but from what i can gather their are mixed messages and the brain is trying to correct itself with the corresponding body part. If this is the case then that is exactly what it feels like for me. If i go into the sleepy state i need the big shake of upper torso, inc head, and then will wake up properly. If i have tremors or start with a small shake i generally need the big shake and then all is fine again. If i try and hold my hand for arguments sake it only makes matters worse.

I Don't quite follow what a functional MRI is or the PET scan but it sound like they may be worth persuing.
Thanks so much,
Scotty
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Postby scotty » Mon Mar 23, 2009 7:27 pm

Mark,
Thanks so much for your responce, although dissapointing it is also good to know that i am not the only one going through the same BS with the Docs and tests.
I will go through your previous posts and see what i find. I am certainly glad to have found this site. The responce and support already has been great.
Scotty
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Postby sou » Tue Mar 24, 2009 9:52 am

Hi scotty.

PET is an abbreviation for Positron Emission Tomography. Such a tomography shows which cells of the body are functioning. It could detect a possible malfunction, unrelated to MS, if what you describe is not MS. Unfortunately, all other possible causes must be ruled out before you get a certain diagnosis.

See here:

http://en.wikipedia.org/wiki/Positron_e ... tomography

fMRI is an abbreviation for Functional MRI. It is very similar to MRI, but it can detect functional changes in addition to structural. If you have no lesions (structural alterations) but you have symptoms (functional alterations), this scan could be a good choice.

HTH,

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby scotty » Tue Mar 24, 2009 3:52 pm

Sou,
Thanks for that. It should give me some more places to start if this next lot of tests show nothing. Is a FMRI done in the same MRI machine and how does the actual test differ? Do you know if it is possible to have these tests done at the same time or would i be best to wait until the full MRI is done?
Scotty.
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Postby sou » Wed Mar 25, 2009 5:34 am

Hi Scotty.

I am not familiar with the process, but I think it is interactive. The "person under test" is given instructions during the scan i.e. move your finger, press this button etc. I think a specialized machine is required that provides means of interaction during the scan.

You could ask your neurologist. He must be aware of this process. He is the only person responsible for evaluating whether you need to undergo such a scan or not.

Keep us posted about your progress!

sou
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mri done 1.5t machine

Postby scotty » Thu Apr 23, 2009 7:19 pm

Hi Guys,
I had my MRI done today, the machine was a 1.5t. Would that be a sufficient quality machine to show leisions in early stages? I have read articles that state that there are different qualities and someboby posted that "all the low quality MRIs in the world arn't going to do you any good".

Also i have been getting stabbing pains in my head does anybody else have these or know if they are caused by leisions?
Cheers,
Scotty
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mri results clear

Postby scotty » Thu Apr 23, 2009 11:16 pm

Hi again,
I have just been to the Drs and the report on the MRI was normal. Good news in some ways but bad in others as i am still none the wiser as to what is wrong with me or where to turn to next. I have 2 more Neuro appointments, so will wait and see what they have to say.

Thanks for listening,
Scotty.
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Postby jimmylegs » Fri Jul 24, 2009 10:54 am

hi scotty are you still visting TIMS much? found something that might interest you - have a read on low calcium and links to muscle spasm, seizure, throat spasm (maybe causing coughing?) itching, numbness, etc etc etc
http://emedicine.medscape.com/article/767260-overview
pins and needles
http://en.wikipedia.org/wiki/Hypocalcaemia
fatigue
http://www.uptodate.com/patients/conten ... UErxAXkcXM
might be something to look into.
ps i found timtams at a grocery store in canada the other day SWEET!!!!
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