Length of time to DX

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Length of time to DX

Postby Shanoot » Wed Sep 22, 2004 4:42 pm

I have been reading all the posts and there is some wonderful information here. People have really done a lot of research and I have been able to expand mine with help from you guys, so thanks.

I started having steady symptoms back in Jan of 2003. Been to the round of Dr's and had tests. The motor evoked potentials came back abnormal and that's it. Yet I lost my vision for three days (blurry, could see shapes only, couldn't read etc) dizzy, cramps, you name it. Things quiet down for a month or two and then something else comes up.

I am seeing an MS specialist now and have an MRI scheduled for next month. He said he was surprised that the last one didn't show anything because of my symptoms. That will be six months ago.

I have a few questions I hope you guys can answer

How long did it take for you to get dx and how many MRI's?

My left side seems to be effected more and my left leg often feels tired and painful. If it is MS, is it possible it could stay this way or does it get worse by virtue of the disease. I often find myself worried about the leg just not working at all but it's been a year and half and .....

Did anyone worry about ALS while waiting for a dx? I have found info on it, but I can't seem to find anywhere a real time line for problems. The articles tell you things gradually happen, but no reference other than 3-5 yrs life expectancy.

Have you ever started to doubt anything is wrong, only for something else to occur? Did you find you seemed to be more sensitive to the little aches and pains and again thought maybe it was normal?

Did you tell people other than familywhat you were going through?

Sorry for all the ??'s and I will probably have more, I just want to know (think) that I am not alone in all of this.

thanks

S
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Postby treez » Thu Sep 23, 2004 5:48 am

Hi Shanoot,

Lots of questions are good! At least you're not putting your head in the sand and settling for what you're told to be gospel.

I'm no expert but consider myself better informed than the average MS patient I've run into.

I've never had evoked potential testing, seems there are others that are as good or maybe better for DX's.

When you lost your vision, did you get treatment?

Was your MRI just of your head? Lesions can show up on your spinal cord so many times Neuro's will also do an upper cervical spine MRI. Have you ever had a Lumbar puncture? Not the most pleasant of tests but not as bad as people make it out to be.

My disease has definitely been following the relapsing remitting course. I think everyone has there senses on "high alert" for any possible changes. I've learned that most of the time "sensations" I've noticed are unfounded.

I have told a few people other than family, I guess that just depends on you. Many here though seem to think it's NOT a good idea to tell co-workers bosses, etc.

I think we all have those "worst case senario" thoughts. They'll drive you nuts if you let them run away with your mind though. I know, I've had a bad case of the "what if's".

I personally was DX'd in March, 2004. I'm not 100% convinced it is MS but some of the alternatives are worse yet I guess.

I'm currently on Betaseron, my wife is a pharmacist and we sorted through available reports and literature and decided on that one of the 4 disease altering drugs available. I have another appt. with my Neuro. tomorrow and at a University with a good Neuro. dept. at the end of the month. Never stop looking for more info or promising treatments!

treez
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Postby OneEyeBlind » Thu Sep 23, 2004 9:09 am

S,

I felt the same way. My first symptom was June of 2003. I had Optic neuritis also and experienced complete blindness in one eye for 6 months! I had Spinal taps,(inconclusive) Evoked potential, (Normal)and MRI's that were clear and not clear. I also had doubts. Symptoms don't always coincide with tests.

And as usual, I do agree with Trees.

I was diagnosed August 2004. I am on Copaxone. IF you would like to "talk" you can personal message me.

Be well,
Karen (OneEyeBlind) :wink:

* I don't suffer from insanity, I enjoy it!
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thanks

Postby Shanoot » Thu Sep 23, 2004 9:48 am

Thanks for you replys. I sure hope I am posting in the right area. Trying to get used to the board.

I was not treated for the loss of vision. It happened while I was in the tub reading one night. I was under the impression I had a sinus infection and thought it was part of it. I wasn't thinking anything at this point, didn't know about ON and thought it was just one of those weird things. By the time I got to a neuro, it was 6 months and the eyesight was fine. I actually didn't even say anything until we went through a list of items and I said, oh yeah, I had that. By the time she sent me to a opthoneuro, and a head MRI, there was nothing there.

I had a full MRI last year, full spine and head. Next month, I will have a head and neck. The Doc laid out a plan for me. If this comes back negative, then he will have me do a spinal and go to UCLA for a battery of tests.

I have two boys and a hubby and I hate that I have to take naps on the weekend or can't walk to dogs or go hiking whenever I want to. It has to be a good day. Heck, there are days I can't wear heels to work. I am a control freak and the idea that something can have an effect on my life and my families lives without my consent ticks me off.

The worst thing for me is the slurring speech and the forgetting. Last weekend I was rinsing something out in the sink and just forgot I had the water on. Flooded the bathroom a little, but caught it before major damage. That kind of stuff makes me nuts!!

I am reading your journal, one eye and some things sound so familar that it's scary.

I am scared of both outcomes next month. Positive MRI = MS or Negative = more tests and uncertainty, but no MS. Can't win ;-)

Thanks again you guys.

Sharon
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Postby OneEyeBlind » Thu Sep 23, 2004 10:41 am

Sharon,

The best thing I can tell you is that you have to have a positive outlook. You can't let the MS control you, but you sure as heck can try to control the MS, if in fact you have it.

I was somewhat prepared for the Dx because I researched it and just knew in my heart that I had it. It was still a bit of a shock hearing it out loud from the Neuro. But I have come to terms with it. I have accepted it. Life goes on..or Life is what you make of it. Things could be worse! And I have made a lot of new friends because of it.

I wish you the best. If you need an ear, PM me.

Be well and keep in touch,
Karen (OneEyeBlind) :wink:

* I don't suffer from insanity, I enjoy it!
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