My life is changing -advice?

[Hoshi]

I'm sorry for the huge, long post...

For years, I've felt fatigued...probably since I was 15... but after some doc visits, I decided to just learn to live with it.
When I was 17, I started having balance problems, vision problems (double images in one eye), more fatigue, vertigo, weakness on my right side, and more brain fog. Went to neuro - had a MRI, said it looked okay but that his findings of my flexes/balance were irregular. Was sent to physical therapy...symptoms mostly went away, but not due to the PT. They just seemed to stop after a few months of their own accord.

I've had a few times like that since then, but not lasting as long as that one (2+months). So it was okay. I'm still tired all the time, but I could deal with it.
Then my muscles started spasming a lot about 6 months ago. It's constant - at any time, I can feel at least one muscle spasming or cramping. If I move my foot in one of many ways, one of my toes will bend STRAIGHT down at an unnatural angle with the muscles straining so hard that it's incredibly painful - and it can't be righted without physically grabbing ahold of my toe and FORCING it back into the right position and making sure to keep it still. My fingers do similar things.

I hurt. A lot. The nerve pain is the worst - yesterday, I did nothing but curl up in a ball and pop every medication I could think of (OTC stuff like tylenol, naproxen, rx stuff like clonidine and lyrica) before giving in and taking a klonopin to knock me out because I couldn't stand the pain.

After I got the flu about a month ago, it's been on the downslope. It got much, much worse. I was scheduled an appt for a neuro on the 10th of next month after tests for Lupus/RA and such came back negative. Something is very wrong. My doc said that Multiple Sclerosis looks like the most likely suspect.

As it is, I'm having trouble. I had to drop 2 classes because I can't physically handle the workload. I'm gonna have financial issues since I planned on picking up some hours at work but now cannot physically do the job. Some days I can't get out of bed because my muscles are like water. I've started having trouble walking. My right foot causes me to trip a lot because it doesn't lift up very much. If I had to walk heel-to-toe, I cannot - I fall over right away. I'm so weak that I can't even carry 10lbs a short distance when I used to be able to carry 50lbs (I was to designated lifter/mover of my family). I'm too tired to go to the movies with friends or to make it to class sometimes. Even little things push me beyond exhaustion.

My question is this: How do you deal with this kind of thing? I'm kind of scared right now. I'm 20, this shouldn't be happening. I don't know what to do or how to deal with this. Any advice would be very much appreciated.

[cintinative]

I don't know what you might have but I would really suggest going to another doctor for a second opinion. It sure does sound like there is something wrong with you. If you have MS, there should be indications on your brain MRI (although sometimes there are not). In any event, if you have MS, there are treatments to help with the pain and other symptoms.

That said, you are VERY young to have MS. It is very unusual for anyone under the age of 30 to present symptoms.

I had a friend who had a very rough childhood (abuse) and had an eating disorder. She started to present symptoms of MS in her 20's. They assumed it was because of her damaging her body with the anorexia (sp?). Anyway, after many years of treatment and not much success in relief, they found a tumor. It was in her uterus. They had no idea it was there until this point, and it was huge. They removed it, she received chemo, and her energy and other issues started to dissipate. She still has health issues, but they are now saying she never had MS. This is why I encourage you to see another doctor. It is not enough to just accept the MS diagnosis if there is not brain scarring and other clear signs of this illness. My friend was convinced she had it when all along she didn't have it at all. She is lucky to be alive. Listen to your body. It is telling you something is very wrong. Keep seeing doctors until you find one that will listen. And hang in there. This kind of pain and fatigue can make you want to just give up. Don't. Fight. Fight to get your life back. =)

[Hoshi]

Thank you :)

I haven't been dx'd yet - I'm going to a neurologist. I had a clean MRI 4 years ago, but things can change. That neurologist I had the first time (when I was 16 or 17) even told me that "what you have may not be showing up yet" - plus the MRI didn't include the brainstem.

So we'll see how that turns out. The neurological symptoms are scary, to be honest. When your right side is suddenly so weak that it causes you problems walking... when you see double on and off... when you can't walk a straight line... when you fall if you are standing and close your eyes...and the shooting nerve pain is, quite frankly, hell. I have a high pain tolerance, but when that pain comes, I want to absolutely howl.

I just want some relief. I'm about to turn 21 in November... I wish I could have the energy to spend that day with friends and family.

[tmsmalley]

My thought only a few sentences into your post was also MS. My dear cousin has this as well. Unfortuantely, it often strikes women in their 20's and 30's. Find yourself an MS support group. I'm sure there will be lots of people there that can relate and help you through this. If it helps any, my cousin is pushing 60 now and has 2 kids. Although she's had a lot of struggles with the MS (and with other things), she's been able to have a very full life and learned to manage her symptoms and adjust things when there are flare ups.

All the best to you!
Tess

[tmsmalley]

This link might be helpful...

Possible MS : National MS Society

There are counselors you can there and just talk about what's going on.

Tess

[Mothernature]

I also recommend a second opinion. Had I stayed with my former PCP, I would have remained misdiagnosed, destroyed my pancreas, and possibly became very ill. I think many doctors are not willing to dig deep to make an accurate diagnosis.

A chronic illness is life changing. It doesn't necessarily mean it is bad though. Yes, your body is not in its former state; it will give you a good perspective.

{{{{Hoshi}}}} I hope you feel better soon!

[Kristen.C]

I have to agree that I immediately thought MS when I started reading your post. The good news for you is that treatment for the disease has come leaps and bounds, and you can live a very normal, active life and still have MS. My Rheumatologist was diagnosed with MS while she was in college and she's able to work daily and live a very normal life. You wouldn't know she has any problems unless she told you. (Or in my case I happened to do some research when I was choosing doctors and found an article about her in the local paper.) I also have another friend that I met through couponing who has MS and she participates in all kinds of bicycling events and lives a really full life. Just keep on going to your doctors visits, get that second- or even third- opinion, learn everything you can about the disease and how it's treated, and keep a positive outlook on things. Good luck!

[queenofthehivemomof5]

My first thought upon reading your post was also MS. My best friend has this and it is managable. Get a proper diagnosis, second opinion, third, fourth. Do what you got to do to get a diagnosis. Knowing what it is is half the battle. Don't let the doctors tell you they don't know what it is. Keep pushing!

[selah]

Well, my suggestion is come and join the Christian group on this site...

http://www.hotcouponworld.com/forums...istianity.html

If you are Christian, great....if you are not, great.....because many who have read my posts know that I believe God can change anything....and I do. Life is difficult, and many times sickness is a part of that difficult....but it doesn't have to be permanent. Doctors can only do so much, but there are no limitations to God. Doctors do have knowledge, but many times, they don't have cures....just things and ways to handle some of the problems and many times, they don't even have that....my prayers are with you....and I do hope you come to the group, because there, I could possibly give you more encouragement.....life on earth can always be helped through God....because that is why He came to this earth through Jesus.....because He knew we would need it. ...hope to talk to you more....Be Blessed.

[hbaqueen]

HUgs!

Obviously my first thought is MG but thats whats close to me and Ive had all those symptoms so its of course my first thought.
Myasthenia Gravis - Autoimmune, Myasthenia Gravis Patients, Thymus Gland - Life Extension Health Concern#

And since they are so closely related also could be MS and LG.

I do know that my neuro and the reading I have done has told me that double vision is a BIG tell tell sign of MG. And that was the first thing that happened that anyone would admit there was indeed something wrong with me even though I had been saying it for a while.
So Id ask for the blood testing for it to atleast rule it out.
But even before the double vision hit me I had all these you listed
having balance problems, vision problems (double images in one eye), more fatigue, vertigo, weakness , and more brain fog

As well as jumpy muscles, spasms, and muscle fatigue.

And it would make sense that you have it and then it goes away since it can go into remission and then come back without notice.
Hopefully thats not whats going on with you but worth mentioning to your Dr andhaving it checked. There are only 3 in 10,000 people diagnosed so a lot of drs dont even know much about it.