How I learned I have MS.

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How I learned I have MS.

Postby GeoGuy » Sun Sep 30, 2007 4:14 pm

Hello Everyone,

It has taken me about eight months to trip across this site. I'm certianly glad I did. I was diagnosed with RRMS back in January and it came as quite a suprise! I hadn't had any symptoms until I woke up New Years Day with double vision, vertigo, and vomiting. Ok, I know it sounds like a hangover, but I hadn't had that much to drink. I thought maybe I had food poisoning. The vomiting finally subsided late that afternoon, but the double vision and vertigo persisted.

The next day I called my primary care doctor and she told me to come on in. When I got there she examined me, took some blood, gave me a 'script to help with the spinning, and said she call me when the bloodwork got back. She called the next day, saying the results looked normal and asking how I felt. When I told her no improvement, she immediately recommended an MRI, and set one up for the following day. I thought to myself, 'cool, never had one of those. Now I'll know what's in my head". It never occured to me it might be scar tissue.

So off I went to the hospital (no I wasn't driving, I let my longtime girlfriend do that. Which is scary enough in itself. Not that she is a bad driver, she just seems to attract people who are. I mean, the woman has had 11 cars totaled out from under her. But I'm getting off track..) where they were kind enough to bring me a wheelchair so I wouldn't stumble all over the place. Yes I let her push the wheelchair.

So out comes the insurance card, off goes the jewlery, and down the tube I go. Twice. I should have known something was up when they wanted to inject some unspecified cold fluid into my arm and run the scan again. Actually it wasn't bad. The lights were turned down, the temperature was on the cool side, and I got to lay down. Perfect for sleeping. Even the small space of the MRI tube wasn't a bother (I used to go spelunking). The hardest part was trying to lay still. Anyway, it got done and off we went. Didn't even see an accident.

When we finally got home about six that evening the mesage light on our answering machine was blinking. (No we didn't go straight home, why should I stay at home and feel bad when I can go out and do it.) It was a message from my doctor. She said she had received the MRI results and it looked like I have Mulitple Sclerosis, and I had an apppointment with a neurologist for the next afternoon. Ok, that wasn't expected. Up till then I was a perfectly health 45 year old male, never sick other than the occasional cold. Even my weight and cholesterol numbers were good - no mean trick for a guy that grew up in, and lives in, the deep fried south.

This being the information age, I googled MS. I got to the National MS Society website and started sucking up information. I went to bed that night emotionally numb and wondering what the neurologist visit the next day would bring.

Next morning, I wake up and most of my left side is numb and I'm starting to lose my voice. I got scared. So I called my doctor and told her my symptoms were getting worse. She suggested that I call 911 and go to the hospital. I did.

As it turns out, the neurologist I was going to see later that day was on rounds at the hospital. He walked in to my room, introduced himself and started giving me an exam. Follow my finger, touch your nose, squeeze my finger, can you feel this, etc. Then he sat down and started to explain what MS is, and what my MRI had indicated. Apparently I've had MS for a long time and have many lesions. It was just that the one that brought on this exacerbation was in a particularly noticable spot. My brain stem (the center of balance, so I'm told). The neurologist ask me if I ever had any unusual vision problems and I told him yes, about five years ago I noticed that my vision became blurry when I got hot. I went to an opthamologist and had my eyes examined at the time and was told my vision was fine. I chalked it up to getting older. Turns out vision problems are often the first symptom to show up with MS. Who'd a thunk it. Then I mentioned that for the previous two or three months I had been noticing numbness in my outer two left fingers. I had chalked that one up to an old neck injury.

So I spent the night in the hospital getting solumedrol IVs to try and bring my vision back to normal (it worked), and getting some instruction on how to use a cane. I was set up with an IV nurse to show me how to continue the solumedrol at home for three more days and at home physical therapy three days a week for four weeks. That pretty well got me over the exacerbation. But I was out of work for seven weeks. Fortunately I have temporary disability insurance through work.

I started on Rebif in February. It's working out ok, with minimal physical side effects but I do have occasional feelings of anxiety for no reason. I never had them before.

Today, I stilll have some numbness on my left side, occasionally feel dizzy or have blurred or even double vision, but I get around unaided and can hold down my job. So I'm feeling pretty good about life. I try not to worry about the future and the unpredictability of MS. It will be what it will be. I do what I can to take care of myself, eat right, exercise, take my meds, and stay informed. When it comes right down to it all you can do is get on with life.

I hope this post isn't to boring or self serving I look forward to reading and writing here for a long time.
RRMS since 01/07.
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Postby Loobie » Mon Oct 01, 2007 10:56 am

Hey Jack,

Welcome to the board. I had a very similar initial progression. I still have the vertigo, still work, but can't exercise like I used to. That may sound scary, but this shit scared me so bad at first that I exercised like an athlete in training, not a 41 year old man with a full time job. That brought on other problems and now I am like you, I exercise to a normal level, and basically take it as it comes. Some days that's easy, some days that's really hard, but what are you going to do? The only thing I do know is that you can feel a whole lot worse if you feel hopeless. The anxiety is probably part of the interferon process. I was on Avonex (same Interferon as Rebif) and I had to go off of it due to that, and other complications but that was the main one.

Good luck with your diagnosis and keep up the good work!

Lew
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Postby AllyB » Mon Oct 01, 2007 1:16 pm

Hiya Jack

Sorry to hear about your troubles, but welcome to the site. It seems as if you are handling this pretty well, considering, and I am sure it helps that your girlfriend is supportive (in spite of her poor history with cars!).
Your experience is fairly typical, from what I have read. Mine was a bit different, but I think that just illustrates that this disease is nothing if not unpredictable....
I really hope that your treatment works well for you as it has for many others - I am on Avonex (same drug, different dosage), and have had no relapses since being on it. Please keep up your great attitude, and if you can't, know that you can talk about it here as you are sure to find someone who can relate. Also, there is such a wealth of information stored in the heads of the people on this site - I really think it is the best source of information on the 'net.

Take care
Al
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Postby REDHAIRANDTEMPER » Mon Oct 01, 2007 1:24 pm

welcome to the group here..its a great bunch of people and gives you get support and information...so again welcome

chris
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Postby GeoGuy » Tue Oct 02, 2007 4:08 am

Thanks for the encouragement Lew, AllyB and Chris - lookin' forward to conversing with you in the future.

Have a great day!

Jack.
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Postby TwistedHelix » Sun Oct 07, 2007 5:56 am

Hello Jack,
A belated welcome to the site. It's sounds to me as if you have a pretty healthy attitude to this disease, which is good to hear, but anytime your mood slips don't hesitate to share it here – we're all more than willing to listen and try to help.
Not too sure about your attitude to personal safety though... You actually allowed your girlfriend to drive and push your wheelchair? Sounds like an MRI scanner is the safest place to be.
Your description of the number of lesions you have is a perfect illustration of the fact that the quantity is less important than location and type in terms of visible symptoms: a lot of people get very worried when they find out they have a high number, and the focus on lesion load in clinical trials only makes that worse.

And please, what on earth is "spelunking"? I thought I knew about every sexual deviation, but I can't find any "specialist" web sites on this one…
Dom
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Re: How I learned I have MS.

Postby Lyon » Sun Oct 07, 2007 10:52 am

Hi Jack, welcome to the site and I'm sorry that you have reason to be here.
GeoGuy wrote:When we finally got home about six that evening the mesage light on our answering machine was blinking. It was a message from my doctor. She said she had received the MRI results and it looked like I have Mulitple Sclerosis, and I had an apppointment with a neurologist for the next afternoon. Ok, that wasn't expected.
So you weren't notified face to face that you have MS, or even notified personally over the phone, but instead had a message on your answering machine? Somehow that seems the height of uncaring rudeness.

Bob

PS. I SO enjoy knowing something that Dom didn't :twisted: http://en.wikipedia.org/wiki/Caving By the way, I could NEVER consider doing that. I've been in Mammoth caves a couple of times and an old iron mine in Iron Mountain Michigan, but you could drive a car in those places. Having to squeeze through a hole on your back with 1/2 mile of rock above you? That would drive me even more insane.
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Postby GeoGuy » Mon Oct 08, 2007 5:40 pm

Ok guys,

First, spelunking is not a sexual position, although one could certianly have sex while speluking. Or as it is otherwise known, caving - crawling around in holes underground. It is fun (actually they both are!) but in the case of caving, I speak from a professional point of view as I am a geologist. I won't delve into my opinions on the other possibility as I really don't want to get kicked off the forum just yet.

As for getting the news I have MS from a message on my answering machine, yea, it wasn't the best way to receive it, but I don't fault my doctor. She had a real conundrum once the machine picked up. Should she tell me the whole truth, or just say , Hey, this is your doctor, call me, and leave me to wonder the worst the rest of the night. (I would have never thought of MS, brain tumor yes, MS no.) So I think that was probably her best option.

Speaking of lesions, I agree wholeheartedly with Dom's statement about quantity vs location. All I know is what the neuro said in the ER - I have a lot of lesions, but the newest one on my brainstem set off the exacerbation that led to diagnosis. I still have not been able to see my MRI or read the report and it's really starting to piss me off. I'm seeing a new neuro next month and she better take the time to show it to me. I'd love to get just one image and put it on a T-shirt.

One final blurb, humor is really the key to how a handle adversity. As long as I can laugh, I'm fine. And I can find something to laugh about in anything. As a matter of fact, I had the thought that MS could be a great hook for a comedy routine (I always had a part of me that wanted to be a standup comic) but then I found out that Jonathan Katz had beat me to it. Bummer.

I look forward to hearing from all of you, both the good and the bad.

Take care and try to laugh every day.

Jack.
RRMS since 01/07.
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Postby LisaBee » Mon Oct 08, 2007 6:50 pm

Jack,

I am not sure, this may vary with location, but I think you can get a copy of your MRI directly from the imaging center. It is your record and you are entitled to it if you want it. There will be films of the imaging sections of various areas your your brain and a radiology report.

As part of my own diagnosis story, after my MRI I got a weird cryptic phone message from the neurologist's nurse saying that I had abnormalities on my brain MRI, but she wouldn't say what they were, and hurriedly reassurred me they weren't "bad". I would have to wait for my neuro appointment in several days to hear the big secret. I couldn't imagine any abnormality on a brain MRI not being "bad". Trying (and failing) to imagine a good abnormality, I went to the MRI imaging center and got a copy of the radiologist report, read it, saw statements like "numerous areas of abnormal signal", "gliosis", "consistent with demyelinating plaques", and knew what the neurologist was going to tell me before I got in his office. He gave me his diagnosis, cheerfully pointed out all the bad spots on the MRI films, including black holes which he said were dead spots, all of which made me feel woozy and I had to go lie down on his examining table for awhile. Prepare yourself for that reaction, even if you already know what is there, like I did. Reading it in a report and actually seeing it on film are two different things. Especially those oozy looking enhancing lesions and black holes, the little white spots, those aren't quite so bad. It is not pleasant to look at what is going on in your head, and there is something about actually seeing it that can take it out of you for a little while, even if you think you're ready.

I am sorry you have had your experience, but at least your doctors did not subject you to dramatic suspense on top of everything else.

BTW - I also did a little caving in my past. It cured my mild claustrophobia. Who would have thunk it, that spelunkin' prepared us for a stint in the MRI tube? I thought of that as I lay in total comfort, listening to all those syncopated pings. We just never know what past experiences prepare us for the future...LOL....

I asked my neuro for a prognosis based on my MRI and he just laughed and shook his head, saying he had no idea. That is an honest answer. More than three years later, I am still standing, black holes, enhancing oozies, and all. I went horseback riding in Iceland last September, and would have gone again this year if I had the money. Just remember when you do look, those spots don't necessarily mean a lot. Since nobody knows, live life to the full. Do the stuff you want, whatever it is you can do, and don't wait.


Lisa[/i]
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Re: How I learned I have MS

Postby NHE » Mon Oct 08, 2007 8:23 pm

GeoGuy wrote:I'd love to get just one image and put it on a T-shirt.

Here's an image I scanned from my first MRI. I chose this slice not because it shows any particular feature specific to MS, but because I thought the slice through my eyeballs looked pretty cool. Note that I had optic neuritis in my left eye at the time as well as problems with my right foot. However, this image was without gadolinium and, not being trained to read these images, I don't see much wrong with my eye. By the way, speaking only for myself, I don't think that I would want this on a t-shirt.

Image

NHE
Last edited by NHE on Tue Oct 09, 2007 2:43 am, edited 1 time in total.
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Postby LisaBee » Mon Oct 08, 2007 8:34 pm

Well, Halloween IS coming up!
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Postby GeoGuy » Fri Oct 19, 2007 6:16 pm

Hi Guys,

Sorry it has taken me this long to get back with you.

NHE, the eyeballs are definately creepy. I was thinking along the lines of a spoof of the old Regan era anti-drug ads, This is my Brain, This is my Brain on MS. With a little Photoshop magic it wouldn't be to difficult. I'm really lucky in that I haven't had to try and hide my MS from my friends or co-workers. I looked at the tee shirt as a way of proclaiming "I have MS and I'm still here". A victory of sorts.

LisaBee, thanks for your thoughts on viewing the MRI. I haven't read the report yet either. I think I can handle it. Right now all I know is what the neuro told me in the hospital, "You have a lot of lesions and an big one on your brainstem. At least when I see/read it I'll know what a lot means! And your right about past experiences preparing us. Who knows what tthis MS experience will come in handy for in the future.

Iceland sounds really nice. I imagine it as being nice and cool, no heat to aggrevate symptoms.
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