12 yrs of not knowing

[GWJax]

Back in '98 I was put in the hospital for 9 days. I was losing my balance, dizzy, high blood pressure and high heart rate, quit breathing, high temp., blurred vision, memory lose, complete right side numbness, could not talk or walk and this was just a few thing wrong. The doctors had no idea what was wrong. I had a very high white blood cell count and spots on my brain.

During my stay, my neuro doc thought I was faking all of this and had me evaluated. Everything came out that I was not faking any of it and then neuro doc took me off all my meds and caused me to crash big time. Once this happened my wife fired that doctor and brought in another one. At this time I was so bad that they only gave me a few day to live. One thing I am thankful for is that I do not remember most of this happening.

Well I took a turn for the good and was able to be released after 9 days. This took me about 6 months to recover and then after almost a year to the day I had another attack that put me in the hospital for another 9 days with all the same problems again. The doctors still don't know what is wrong but my neuro said it was not MS.

So as the years went by and having small attacks here and there and being on a ton of pain meds to help with my pain. My wife had me change my neuro doc this year. Right before I was to be setup for another MRI, I had another attack while driving to a clients office over an hour away from my shop this May. My vision was going blurred and pulsing in an out. It was getting harder for me to breath. So I called my wife and told her that I need to go to the hospital quick. I was able to get back to town and as soon as I stopped to drop off my car I lost all feeling in my body and could not stay awake. Once I woke up I had a trach in and I was in the hospital. I now had more brain lesions and had another LP done which this was #10. This time once all the lab work can back it was with out being said I had MS.

This last attack took me over the edge. After being able to work at the age of 14 and never having a day without a job since then, I am no longer able to work. Walking is very hard for me to do and when I do walk I can only go maybe 200 feet before crashing again with tremors. My new neuro doc said that he has never seen anyone push them self like I had and he's not sure how I did it with the amount of damage I have. He ordered me to quit work and go on disability ASAP. It was and still is very hard for me to accept this fate. Not being able to drive or even walking to the mail box is the worse thing I have ever gone through. I still don't know how others do it and keep a smile on their face.

I guess this is one reason why I am here typing this post. Everyone that I see having MS looks like there is nothing wrong on the outside. The only thing I have to compare to is myself and the pain that I go through. If there are others with the same problems that I have, I would love to hear from you or really anyone else with MS.

Thanks for reading,

Jax

[MSNorthernVA]

We're all right here with you, okay?

Jax--

The one thing that has been consistent for me in dealing with--and being a part of--MS Communities, is that everyone here is smiling because we're all dwelling on the positive. The negative is obvious: Waking up from sleep in jolting pain, leading toward the left or right as you walk even a few steps, eyes that can't be trusted, a memory that can't be trusted, a medical community that (mostly--no over-arching judgments here) doesn't quite GET the day-to-day-to-day-to-etc. reality of what we go through.

We smile because...because it's what's left to us. And I don't mean that in a pitiful, plaintive way. What we've contracted, this disease: This is our lot. It hits us all differently, and it hits our HOPE CENTERS differently. You: You're identity is wrapped up in being able to work, being able to function along a specific spectrum....well, me too, and him, and her over there...maybe it wasn't WORK for all of us, but it was all SOMETHING.

And that something is now CHANGED. Not gone, Jax: CHANGED.

Therein lies the smile: It's not that we've all DONE this, and have some precious secret knowledge that isn't being shared: We're all DOING this. We're, ALL OF US, [I]IN THE MIDDLE[I]. I don't know what the end of this thing looks like, and I don't think anyone else does either. I know that MY end of this thing is going to be me not losing to this. I may end up with MY LIFE changed, MY PATTERNS changed, MY JOB changed...I'm not going to end up with ME changed.

I am very, very sorry for the despair that you are feeling. And don't get me wrong: Smiles aside, I have my despair days (and minutes, and moments) too. But get this: You are YOU. MS is a disease. People get diseases all the time. Well, this is yours---no, OURS. Think about that. I'm out here. You're out there. There are a lot of us. We say that we can still have productive lives because WE CAN STILL HAVE PRODUCTIVE LIVES!


And we're all smiles, because we're all still alive.

Hope, and love, Jax

Sincerely,

--JP

[cocogirl]

Hi Jax! I am so glad that they finally gave you a diagnosis instead of being out in the unknown. I had sxs starting at age 14 and was diagnosed at 29. I had dr. after dr. tell my parents that I was neurotic. I knew that the problems were more than a neurosis.

I don't have the kind of sxs that you have had in the same degree but I think if you look at the Primary/ Secondary Progressive, you might find people that have more sxs in line with yours. I am just guessing though.

I hope you can find the support you need right now.

[KoKo]

Hello Jax

Welcome to the MS World Forums - nice to meet you!

I can relate with alot of your MS issues.

I have difficulty walking without the aid of a roller walker. That really helps my balance. Walking on my own two legs? Very risky.......

I had to retire on disability. I had worked since my early teens also. I still think now and then about how hard and well I used to work. But there is no way now that I could have the stamina and strength to work.

I am fortunate to still be able to drive - I use my left foot for braking and my right foot for the gas pedal.

Trust me, I'm not always smiling either! I was told by my therapist one time : Never compare your insides with someone else's outsides. Many people smile even though they don't feel that way on the inside.

We can only do the best we can. I try to take it one day at a time, and also I try to be grateful for the abilities that I still have at this time.

In any case, we're glad you have come aboard here. There are various forums, and many interesting topics. If you stay around long enough, you will see that most of us have ups and downs - but we try to not ever give up

Take care,
KoKo

[GWJax]

Just woke up in tears from my back pinching on a nerve, it feels like my legs are on fire.

Thank you all for the replies. I know that we all have pain somewhere at times but having my pain that does not quit and no amount of morphine helps is hard to deal with at times. I wounder if this will get better or will it just get worse? I have already had botox in my neck that helped out a little bit in that area but I'm still looking for that wounder drug that will take away pain for a little while at least.

Smiling is hard to come by these days but I do sneak one in from time to time. I not looking for a pity party nor do I want one. I just need to know what others are going through so I don't feel all alone in this world.

Knowing that for over 12 yrs something was wrong with me and not being in my head as a lot of doctors though it was. Going from being able to work to being shut down in just a few weeks, I never though in a million years I would not be able to work or even just sit down at a computer for only about 15 min at a time before my sight goes blurred and then waiting for an attack to happen within a few mins after that. I feel like I'm in Hell and there's no way of getting out of there.

I guess just taking it one day at a time is all I can do. I am on Rebif but I don't think it is working because I'm over the the time where most people start taking it. If only my doctors caught on to this early on I might not be as bad off now. But there's no need to look at the past but only to to the future for a cure..

Jax

[KoKo]

Hello Jax

Sorry that you are having unrelenting pain

We know that you are not looking for, nor do you want, a pity party.

As a matter of fact, MS World is also a place for folks to come when they need to vent and share how they're feeling, with no criticisms or judgements.

Maybe if Rebif isn't working, your neuro could have you try a different DMD? Also, have you ever tried Neurontin for nerve pain? Many of our members use that medication and have success with it.

You are going through an exceptionally rough time now. Let's hope that you will get through this, and have some better days ahead.

Here's a smile for you if you need one

Take care,
KoKo

[GWJax]

@KoKo

Thanks for the smile, I needed that after a long night again. =)

I am on nuriontin and it gives a very little bit of help for the pain. It might be that I have soo much going on right now that really nothing is going to help but keeping my mind in a happy place.

Today I get to go to a MS support group for the first time. I hope all goes well with that and I'll be able to stay for the complete 2hrs without having an attack. My wife will be there as she took off work today to take me to it.

I have some friends that are trying to talk to me but right now but I just don't want to talk because I know they will just feel sad for me and will try to help me when there is noting they can do. I guess I feel ashamed of having MS. I know there was nothing I did to cause this but from being able to hide it for all these years to being disabled almost over night, I think my mind just has not caught up with my body yet.

How do I change the way I think about this? I have done alot of research and all points to being worse off than I am right now I really need work to keep me going because work is what I live for and is the only thing I know how to do. Being limited to only a few mins at a time really sucks. Any ideas would be nice to hear or read that is. hehe

Thanks again for everyone's input and comfort words.

Jax