Hi, I have that jerking combined with tremors, its hard to eat, cook etc. For the vision ,there is a test VEP that will tell the Dr if It's your optic nerve giving you trouble. I think you have to go to an opthalmologist ( eye Dr) so he can rule out everything else.

When we spend so many years in pain, we crave a dx, any dx, that validates all we go thru. When I was dx, I felt relief. Now I know.

Alma

I agree with Alma. It was such a relief to get a dx and it's what kept me fighting for answers. I have random jerks where my foot will fly up or my arm out.. It's not often but it's strange when it occurs. I have mostly random twitches that can sometimes be quick and intense so my leg or arm jumps.

I understand your frustration in wanting an answer to all of the crazy symptoms..

Hi there,

I am new here, so I don't k ow all of your history, but we are in a similar boat. I began having MS symptoms over 10 years ago after a bout with bells palsy. Several MRI's showed that I *do* have MS suggestive demyelination, but the neuro I saw refused to diagnose it. Was given a fibro diagnosis eventually, and have been stuck there since, despite my increasing MS like symptoms.. Then, a week and a half ago, I woke up with numbness in my legs that has now become numbness from my torso down. So, I am off to my new dr this week and will be demanding a new MRI and neuro referral! My new symptoms are NOTHING like fibro and I'm sick of being written off as "just" a fibro patient!

That said, I know exactly where you are coming from when you say you want some kind of diagnosis instead of being stuck in the fibro diagnostic trash can. It is so frustrating to KNOW there is something going on, but drs won't do anything about it. And it's depressing as hell to be told that you have this thing wring with you that will make your life miserable, but they can't do anything about it. Although who wants a disease like MS or lupus or ra, at least those diseases have treatments that actually help! So I get what you mean for sure!

Good luck to you. Don't give up on finding answers!

hi!!! well ya- i have jerked so hard- lol- my hubby has had 2 feed me- but it has passed- but doin it again-fingers will hit wrong keys-not on purpose- they do it by themselves- so- id find some answers- u r payin them!! hugs!!!

Oh I should also stress that I do not doubt the existence of fibro! I have lots of wonderful fibro friends who suffer so much and I know how very real it is. However, I think a lot of people who have other things going on get diagnosed with fibro because it's easier for the doctors.

For anyone not experiencing relief following an MS dx, this reaction probably seems impossible. But, for those who thought they might have a brain tumor, Alzheimer's disease, ALS, or any other number of other frightening things, MS is greeted as a much better option. An MS dx may also be a relief for those who were told to consult a mental health specialist because their mysterious symptoms were "all in their head." For them, the dx comes as a welcome valildation of the symtpoms - either physical or cognitive - that they have been living with. Finally they can get the support & treatment they need.

I don't have any tremors like you describe except when I'm trying to go to sleep. I believe that those random jerks are natural when the body begins to relax? Alma gave you some excellent advice on the eyes. Keep fighting, you are your own best health advocate.

That is so true. It's so hard to be told you're crazy or depressed or just "too fat"-all things I have been told by doctors-that having a real answer can be such a relief. I am to the point where an official ms diagnosis will be welcome, as it at least gives me hope and validation, both things I've been given virtually none of for over a decade.

Hi guys,

Wow!! Thanx for the great response!! I would like to tell you all a little story (ok, yeah, I know!! Promise to keep it short...believe it my eyes can't handle it any more either!!! :-) ) I have been reading a book abbott a woman and she sounds like she is late 50s or early 60s cuz she was doing graduate studies at UCLA-Berkley in the 70 s. Thats when her story starts. One day she was sitting outside her dorm and she stood up but fell down and she said that her legs were not even there. Then came the fatigue and basically all the symptoms we all have.

She went to school doctor and they couldn't find anything. She mused a lot of classes due to the medical issues. She was becoming sicker. Her parents grew so concerned they took her out of school for one semester so they take her to many specialists. The rheumy said nothing wrong except low on B 12, mom would give her shots and didn't help. Endo doc said thyroid fine, suggested a neuro and/or a pdoc---suggesting that the issue was psychological as other docs had also. Took her to neuro and she passed the tests..barely..but she did.She told her parents she would learn to live with it. She promised that if new tests came up or new tech she would do it. So she struggled on and after 3 long years she got her masters...should have taken only 2 years.

When the MRI test became something insurance would pay for she had one done. Neuro said nothing wrong. So she just just kept on keeping on. Suffering was her way of life. She eventually had to start using a walker and sometimes a wheel chair. Then in the 80 s she saw a new doc who was recommended as progressive thinking.

She finally, after almost 15 years had a dx!! She was so thrilled it inspired her to write a book bout it..
.......What was her dx? Fibromyalgia. Yep. All those years of suffering and she is given a dx that..get this..people who are dxed with this do not even know what type of disorder they have!!! I asked the good people on the fibro board what type of disorder fibro even was. I only had like 5 responses. Some did not really answer the question at all. Then two said "neuro muscular"---sound familiar to yall?? I think it sounds very familiar.

So anyway....I would like to ask you guys a couple od questions. Before you answer I want you to think bout how your family, friends, cho workers,, church friends, minister or priest, yo your children orfriends or their parents, ...How it would make YOU feel bout yourself. Think hard and truthful before answering..you will not offend me at all.I promise that to you. This is an experiment and I will go on the fibro board and ask them the same exact questions and report back to you their answers. This is an experiment that will make perfect sense to you.
1) Would you rather have Clinical Depression or Bipolar Disorder?
2) Would you rather have fibro or MS?

Also think of the way you will be treated within the medical community. Think of quality of life and quantity...which would offer more of each and which one would mean more to you...think hard guys and remember this...I am on YOUR side baby!!! All the way!!!

Please please please answer, this is highly important...so important I am taken the answers to my docs...want them to have a big heaping dose of reality!!! Don't worry all names will be left out remind me to tell you guys what my husband, who is into computer security says bout our computer names...pretty scary!!

Love ya!!!

Irish

I totally agree that being diagnosed gave me some 'relief", knowing your enemy is important in any 'war' even the MS war. Feeling like you aren't crazy and that your symptoms are real and your disease has a name is the most important part of living with MS. I m afraid of the future but knowing that i have MS isnt what makes me afraid.It is the unknown. Not knowing how bad I will get and how fast is nerve racking but the way I am dealing with it so far is confronting that fear , talking to others whose MS is progressed further than mine, who are living with their disabilities, and having full lives.I don't look at MS as a death sentence but as a life sentence and how you live your life is still your choice.When MS takes a choice away take another path, learn something new, open your mind to new adventures and savour every moment .

Survey

1- Bipolar

2- ms

Hi xlynne and alma!!

Thanx for your replies! Xlynne, I know exactly how you feel. I am always more frightened of the "bogeyman" I CAN'T see as compared to the one I can see...no matter how scary that one is.

When I was 10 yo I had a dream. In this dream I was walking down a street, like a regular neighborhood street with big trees with their branches and leaves over my head like a canopy. I was running down the street calling and looking for my mom. There was these dark, real quiet car driving slowly just behind me. I was so terrified!! I finally saw my mom in a house with bright lights on. She was sitting with other women and they were all having tea. I was so happy to see my mom I started crying (for real also). Because I was so close to the house I began to run very fast to get to my mom and especially to get away from the scary car. Well the dream ends when I happen to glance back at the car and then I looked up at the house where my mom was at, but now the house was as deserted and dark as the other houses and what was worse is the car had sped up and was right beside me and the door was opening right where I stood...paralyzed...not able to move or even scream...

Anyway, since that dream and before that dream I have had some pretty wildly scary dreams but not one has ever scared me as much as that dream. That dream was so scary because I did not know the car, didn't know who was inside, why they seemed to be following me, and if they were following me, what did they want from me??? Then there was the added scare of knowing my mom would be there to save me, and suddenly, in the blink of an eye she was no longer there for me. Plus Nightmare on Elm Street has always been my favorite scary movie and that is all about the unknown!!!

Give me good hard facts. Present me with stats. Be thorough. In other words if I go to a neuros office and I tell him all my symptoms and how they have greatly affected my quality of life. I would expect NOTHING LESSthan a complete MS testing procedure. The regular neuro exam, the evoked response test, a full MRI...not just the cervical and thorax but the lumbar as well. Then I want the spinal tap. If all that comes back negative then I EXPECT that neuro to continue searching and researching till he finds out what IS wrong with me. After all don't I count? My quality of life is just as important as the folks who were a breeze to dx. Doesn't the Hippocratic Oath mean anything anymore? Or is it just like the Constitution, especially the Bill of Rights...just paper and ink?

Alma, Thank you so much for your vote on these questions. I am going to put them in a post and see how many people answer. You never know how far reaching these things can be. Sometime the smallest things are what brings about the greatest changes!!!!

Luv ya guys!

Irish