Honey I am sorry to hear it. That is exactly what I have been getting from the docs. The first one even told me that MS symptoms don't come and go exact words "really nothing nuerologial comes and goes like what you are going through" REALLY??? I am sorry and I feel ya, and all I can say is I know what you are going through.

So sorry to hear of your experience. I can totally understand your frustration and disappointment. But after 22 years with this disease and going through probably 15 or more neurologists I can't say I am surprised. Let me share some thoughts. As much as you want a diagnosis, MS is not one you want. Little can be done to treat this disease for most people overtime and it can be a devastating illness to cope with-phyysically and financially. Some people are lucky and have a mild case, others not so lucky.

When I had my first attack in 1989 I saw about 7 different doctors including a neurologist. No one had much of anything to say or recommend. The neurologist said she was "94% certain" I did not have MS. My presenting symptom was L'hermittes sign - an electric shock through the body when I leaned my neck forward. Later I learned this is a classic sign of MS. I too had an MRI that showed nothing, I went finally to a sports medicine doctor as this all began while I was working out. Then I finally got the diagnosis- fibromyalgia. Despite being painful this was a benign disease and I was grateful and willing to accept this diagnosis.

I even went to the Mayo clinic for a second opinion. The neurologist looked at me across the desk and said "I can tell just by looking at you that you don't have MS". Mayo's diagnosis was bursitis and a somatoform disorder (all in your head).

When the MS reappeared in full force 9 years later the first neuro diagnosed me with chronic fatigue. (He was the former dept. head of neurology (for 30 yrs) at a MAJOR hospital in good old Boston, MA. (of Harvard medical school fame). My legs were so spastic I could barely walk and visual evoked potentials came back markedly abnormal - the optic nerve transmission was very bad. I asked my PCP for a referral to someone else. She told me that she couldn't recommend a neurologist because all the ones she knew were "weird". Honest to God. To make a long story short after seeing many neuros, some abusive and definately weird, I finally got a diagnosis after a brain scan.

This particular specialty attracts some very strange people. All these years later my pain doctor, an anesthesiologist, said the very same thing to me last week. There must be good ones but the majority - especially MS specialists it seems - are downright weird. I am considering writing a book on the difficult path I have been on to get a diagnosis - and with classic symptoms.

As the famous Greatful Dead song says "what a long strange trip its been".

My point being you are not alone in your experience or your frustration. Many of us have been there. The most important thing is to keep looking for the right doctor, believe in yourself and just know you will eventually get a diagnosis. Neurological illnesses are often difficult to diagnose. I thought mine was pretty straight forward and yet I had top institutions unable to get it straight.

I don't know much about your case but cord compression and CSF backing up makes me think of something other than MS. If you had a blood test called an ANA that was positive at 640 I could see a recommendation to a rheumatologist. Was this done? You need a good diagnostician. I always say to people the best place to go is an academic medical center although it didn't work for me.

They have the resources, brain power and curiosity usually to figure it out. Failing that working with a sharp primary care is really essential.

I hope my story makes you feel a little bit better. You are not alone. Best of luck as you search for the answer.

Melanie

I know exactly how you feel mine told me to lose 10 pounds and it would all just "go away"! Hugs to you!

P.S. After a little more thought about your situation I wanteded to recommend you see a physiatrist. Has anyone recommended this to you? I would have thought you have seen one due to the TBI. This probably is the #1 doctor who may be of help to you. This is a doctor who specializes in physical medicine and rehabiltation. They treat musculoskeletal issues, brain Inury, and sports medicine issues among others. This type of doctor has always been of great help to me. Ask your primary care. Its a relatively new speciality. Been around 25 yrs or so. I used to work in this field. I see one currently who treats my spasticity.

First! I want to thank all 3 of you for your comments & your stories! Iray, as I told you in a message reply to you, what this guy said, is perbatum what your guy said!!!

This guy malked me, laughed at me, & treated me like I was beneath him or something!? Like all this stuff that I'm experienceing or going through was just nothing!?

He said that it didn't look like MS to him! That MS doesn't act that way! He said that none of my symptoms were indicative of MS! And, that MS doesn't just have symptoms that come & go like that! And, that really nothing neurological comes & goes like that! And, that my symptoms weren't even neurological or in the neurological category!?

Well, it may or may not be MS, but by-ned it's damned sure neurological!!! In fact, neurological is the only damned thing that they would fall under!? I gave a list of my symptoms up front! Did you guys read the symptoms??? Can you tell me that those symptoms don't line up with MS? The heat issues: I get hot real easy! When I do, I start sweating perfusely, then I become extremely phatiqued, then extremely week, then my legs turn to jello & I can barely take a step w/o falling, & do stumble & walk like a I'm freaking drunk!
And, the flashing lights--they showed up one night & stayed for several weeks or more, then, magically left the way that they came! Then, the blurry vision & ear/hearing thing on the left side together, that just showed up left 3 days later! One side totally not working one morning for several days, & then slowly coming back over several days. Legs going out, while I was in the shower & then not working again for 20 or so minutes! I totally went blind in a store one day for 20-30 minutes.I have major problems with pain, spasms, spasticity issues! Sometimes I have tremors in my hands!? I have had my finger tips go numb then it worked it's way up to my hands, & had tingling all in them which went up my hand/s into my lower arm, & then into my shoulder & I had great pain with it!!! I have had headaches & migraines in the past!

And, of late also!? I will be doing something that I know how to do & have been doing forever & then suddenly I forget how to do it!?

Now, tell me that that shit ain't neurological!!!!??? Even if it's not MS, it's damned sure neurological!

I trust the opinion of my ENT--Dr. Crawley--he's as good as doc as you get!!! Hammit at the Urgent care! And, my best friend! They are all super intelligent people & the smartest ones I know, medically speaking, & totally speaking with my friend!? That I know! And, they all agree, & all believe that I have early MS!!! My best friend is totally convinced!!!! Totally!!!! And, she is more convinced now than ever!!!!!

And, like she said, D.........I know that all that crap that is happening to you is not even close to normal!!! It's soooo blatenly obvious that something major bad is wrong!!! And, I know good in well that it is! I know it is!!! And, as you now know I am totally convinced that it is MS! She said, as you know, I did not want to tell you that, or voice that!!! But, you are just having wayyy too many symptoms that point to that!!! And, to me it just seems so obvious that it is MS!!!

And, my ENT, said that--I have been doing this for a long time & every time I've had a patient come in here & present with the symptoms that you've presented with--almost every single one of them have gone on to have MS!!! He said that some of them get diagnosed immediately when he sends them on for testing, some of them don't show up right then, but a few, or several years down the road, sure enough they test possitive for MS! He said that like 90% of them went on to have full blown MS!

That the precursers to that were always flashing lights, blurry or double vision, esp...... if they had the heart pounding in the ear at the same time or had any kind of deafness, or hearing issue at the same time, & together on the same side!!! And, the tinnitis also!!! He said that in his opinion THAT! ESP.... COMBINED WITH ALL OF THE OTHER SYMPTOMS ARE INDICITIVE OF MS, & 90% OF HIS PATIENTS HAD GONE ON TO HAVE MS!

AND, HAMMIT SAID THAT ALL OF MY SYMPTOMS & THE WAY THEY ACT, & THE WAY THAT THEY APPEAR, & COME & GO ARE MS!!!! HIS OWN SISTER-IN-LAW HAS IT!!! AND, HE SAID THAT ME & HER ARE PARRAL, & HAVE PRESENTED ALMOST IDENTICAL IN OUR SYMPTOMS & THE LINE-UP OF THEM! AND, HE KNOWS THAT SHE HAS IT!!!!

SO THAT'S 3 IMPORTANT, VERY INTELLIGENT PEOPLE THAT ALL SAY & AGREE THAT MY SYMPTOMS POINT TO EARLY MS & THAT I HAVE EARLY MS!!!!

THAT! COMBIINED WITH MY OWN "GUT FEELING," & "JUST KNOWING," & MY OWN INTELLIGENCE, & STRONG INTUITION ALL HAVE TO COUNT FOR SOMETHING!

THIS GUY KEPT SAYING, WELL!? I DON'T KNOW WHAT'S WRONG WITH YOU, BUT IT'S NOT MS OR ANYTHING NEUROLOGICAL!!! CAUSE MS, OR ANYTHING NEUROLOGICAL DOESN'T COME & GO OR ACT LIKE THIS!?

REALLY???? BULL SHIT!!!

Ya! I told him, really? Cause I got 3 people that think so & that are convinced & so far all of the MS'ers that I've talk to all talk about the same symptoms, or similar symptoms! I hear this type stuff over & over & over! I spoke to 2 of them over the phone here & we talked at length, & they both told me that it sure sounds like MS to them, they have had many similar problems!

They also told me that most of the women in their support groups were treated horriblely & abusively by most of their doctors! They were blown off! Treated like they were crazy, lunitic druggies! And, accused of all mannor of evil! Accused of things that they never did, never said, etc... And, that they were told repeatedly that they did not have MS, & that there was no way that it was MS! But they sure have it!!!

I am just appauled at JUST HOW MANY DOCTORS ARE ARROGANT, STUPID, EGNORANT, ABUSIVE, CONDESENDING, & JUST FRANKLY DON'T CARE!!!! NOT TO MENTION THEY JUST DON'T SEEM TO KNOW A DAMNED THING!!! AND, IT'S PREDOMINANTLY WOMEN THAT THEY TREAT THIS WAY!!!

THEY THINK THAT EVERY WOMAN THAT PRESENTS WITH SYMPTOMS LIKE THESE ARE JUST ALL HYSTERICAL, CRAZY, A DRUGGIE, OR IT'S JUST ALL IN THEIR PARONOID LITTLE MINDS!!!!!!!!

AND, IT MAKES ME SOOO DAMNED MAD!!!! BECAUSE WE ARE SUFFERING THROUGH HELL, & IN HELL, & GETTING WORSE & WORSE BY THE MINUTE & THESE MORONS ARE CAUSING US TO GET WORSE & PUTTING US IN THE GRAVES!!!

IT IS SOOOO DAMNED STRESSFUL TO GO TO ONE MORON AFTER ANOTHER & DO ALL THESE TESTS, JUST TO BE TREATED LIKE CRAP, ABUSED, TREATED LIKE WE'RE STUPID, JUST PLAIN EGNORED!

HE JUST WANTED ME TO GO HOME & TAKE MUSCLE RELAXERS!!!!!! WELL, HOW THE HELL IS THAT GOING TO HELP MY DAMNED VISION PROBLEMS???? HOW DOES THAT HELP BLURRY VISION, FLASHING LIGHTS, HEARING PROBLEMS, HEAT ISSUES, PASSING OUT, ETC.....??? THAT ONE STUPID DRUG IS HARDLY GOING TO FIX ALL OF THESE DAMNED PROBLEMS!!! THEN HE WANTS TO SEE ME IN A MONTH TO SEE IF IT'S HELPING OR FIXING ALL OF THIS!? OMG!!!!! IS HE FOR REAL!??? DOES HE REALLY THINK THAT I WILL EVER WASTE MY TIME GOING BACK TO HIM???

I HAVE WASTED SOOO MUCH TIME, SOOO MUCH MONEY, SOOOO MUCH STRESS & WORRY ON THIS SHIT!!! THE STRESS OF GOING THROUGH ALL OF THIS ON TOP OF SUFFERING THROUGH ALL OF THESE SYMPTOMS, & THE STRESS OF BEING TERRIFIED OF LOSING MY VISION & HEARING, OR NOT BEING ABLE TO WALK AT ALL, OR FALLING AGAIN, OR DYING FROM THE ANXIETY & DEPRESSION THAT THIS THING CAUSES ME, ETC....

I MEAN THE STRESS ALONE COULD KILL US ALL!!!!!!!

AND, ALL OF YOU HAVE MY SYMPTHOY, UNDERSTANDING & COMPASSION, & EMPTATHY!!!!!! I FEEL SOOO MUCH FOR YOU GUYS & THE CRAP THAT YOU HAVE TO GO THROUGH!!!!

GOD HELP US ALL!!! IT'S A WONDER THAT WE DON'T ALL TURN INTO A BUNCH OF CRAZY, DRUG SEEKING LUNITICS!!!

I can sympathise with your situation. My neurologist was treating my symptoms as migraine, even though he had a MRI of my brain with Lesions in it!!!!!
Im thinking that alot of doctors are frightened to make a diagnosis of MS... Im not sure why. What I did, and you need to do, is ring your MS soviety (im in Australia yours might be a different name) and ask them to tell you where and how to see a neurologist that SPECIALISES in MS and it s management.
I found my neurologist, saw her, she repeated the MRI and within a week told me that I had MS. I cried.... not so much out of sadness but out of relief. FINALLY sometime told me there is a reason I am feeling like this, and I am not losing my mind. Before that I felt like a hypochondriac, and although my family knew I wasnt right, until diagnosis you kinda doubt yourself sometimes.

Dont dismiss how you feel, seek a 2nd opinion. My understanding is that Lesions do need to be present for a diagnosis, however if this is what you are concerned about, then find a specialist in MS and get an opinion from them. I figured if the MS specialist I saw told me it was migraine I would accept that. But they are the ones who can look at the whole picture and assess you with MS in the back of their minds.

Good Luck and Keep your chin up!!!
Michelle

Paintwarrior,
DO NOT wish MS on yourself. Are you going to a regular neurologist or one who specializes in MS because there is a huge difference between the two. It might benefit you to seek out a specialist. I sought out three specialist and 2 regular neuro's. They all came to the same conclusion - that it was MS. I'm not sure if it was you or another poster who assumed that the dr is afraid to make a diagnosis, I doubt it. The diagnosis doesn't affect them personally so why would they be afraid to help you?

Sooooo sorry to hear your story. Been there like many others. I read that it takes sometimes 8 different neuros before a dx. of MS. I have had to change neuros several times, two were down right rude.

I have had the ANA test many times since 2004, when I got really sick....all negative. Went to my internist the other day for an entirely different reason and she noticed red spots and ordered another ANA, because she thinks that I have another autoimmune disorder, along with MS. My sister has psoriatic arthritis and is covered in psoriasis and has horrible joint pain. Lupus is also being checked again.

I know that you are frustrated, but go to a trusted med site like Web MD or the Lupus group. There are a lot of similar neuro problems when people who have a type of Lupus that affects the spine and neuro system. MS is hard to dx and they just have to rule out everything else that could possibly cause neuro problems. Just a suggestion. I have been to all kinds of sites since getting sick. Knowledge is power and the Internet is great!!!

I am glad that you are being pro-active in your health!! Keep it up and remember......WE are paying these neuros, so THEY are working for US!!!!!! We all deserve to be treated with dignity and compassion because it is DAMN hard to feel bad every single day and are forced to retire. It is 6pm and I am still in my jammies!! Bad day but over 100 degrees here in SC!!!

I know the frustration and desire to know what is going on. Maybe you will be lucky and it won't be MS.

Here is a few links to what the doc's have to go by to make the diagnosis. MS isn't based exclusively on symptoms. The revised 2010 weigh more heavily on MRIs. The DIT (disseminated in time) & DIS (disseminated in space) mean a lot in the diagnosis.
http://www.mult-sclerosis.org/DiagnosticCriteria.html
http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/full
http://www.ncbi.nlm.nih.gov/pubmed/17616439

DEAR MSKC:

Thank you sooo much for what you had to say! And, that's right! They need to be reminded that they work for us, not the other way around!!! And, it is NOT okay for us to suffer just because they don't want to do the job that they CHOSE!!!! TO GO TO SCHOOL FOR & DO!!! AND, THEY ARE MAKING A HELL OF A LOT MORE MONEY THEN WE ARE!!!! I SURE DON'T GET PAID EVERY TIME I GO TO THEM & WASTE MY DAMN TIME!!!

This one tested me for Lupus, Lyme, Thyroid, Folic Acid, & some other things! They all came back good!!! So they have been ruled out! Which adds to my own feelings of this maybe really being MS!? So far other things have been ruled out & the only thing that has been bad has been Vit.... D! Which is also a number one problem with people with MS!?

Thank you sooo much for your comments!!!! And, all of the new comments here as well!!!! I totally love & appreiate your support, esp...... right now!!!

Warrior, remember that part of your name. You are about to go into battle. You have the following you are up against.

1. Stupid neuro.
2. Being a woman (It's all in our head)
3. The war game of pass it along.

Don't stop until a dx makes sense to you.

My first neuro actually laughed at me when I tried to explain fatigue to him. I wasn't smart about MS yet and had no idea how to explain anything. He kept asking did I feel numb. I kept saying no. He dxed it as a pinched nerve in my neck. Mind you, the idiot knew I was in a wheelchair for any distance walking.

New neuro three and a half years later. She didn't ask me if I felt numb, she tested me. She touched by toes (Buddha forgive if the first one ever touched me). I said they felt like cotton. I couldn't believe it.

She gave a good exam. I had MRI's ran the following morning. By noon I knew it was MS.

So get in there and fight. You're about to meet some real idiots.

Sorry to hear about your frustrating appointment. I have had the exact same thing said to me. Not MS because there are no lesions. I have read an article on medhelp by a doctor that states that lesions do not always appear right away. My neuro also told me that my symptoms are not "neurological". WTH does that mean? Apparently she thinks that my symptoms are all psychological. Several people have the same diagnosis. It is maddening! Only when we show lesions are we going to get the diagnosis that we need. In the meantime, our symptoms and illnesses progress and get worse.
I have decided to not see any docs for the summer. I have spent far too much valuable time and money to hear that it is "all in my head" to want to go back. When I have another serious "episode", then I will see. In the meantime, I just cope with my symptoms and try to enjoy my life and my children. Big HUGZ to you! I completely understand your frustration, irritation, and disappointment. Going on with no diagnosis is difficult. While we do not want it to be MS, we need to know what is going on with our bodies! We are in LIMBOLAND together!

I cannot believe the trouble that drs today are having giving a good dx. 25 years ago, nto known to me, a MD sent me to a neuro for testing. His notes later mention suspecting MS. This was an MD, not a neuro and this was 25 years ago. Why haven't they progressed?

I don't get it. I had a sudden onset of optic neuritis . Went to E.R. They called a neuro, she came in and said I am going to do an LP, she did it, they put me in a hospital room, stuck an IV In me pumped me full of ACTH for 4 days. Went in for MRI and then went home on a Friday. Neuro called on monday and told me to come in. Told me. I am sorry but you have MS. That was 8 days to get a dx. NEURO was a WOMAN!!!

Warrior how many females have you seen? Some really listen and stay awake at night trying to figure out what it could be. Tears, can sometimes help to make someone listen. Do you take someone with you to your appointments? You need to. Educate them and have them speak up. If the doctor is being cruel your friend can speak up and ask them why they are so angry with you. 2 mouths are better than 1. You have to take someone who will speak up.

I wish I could go with you. I would help you and drive the docs crazy so they will stay awake at night and think. Ha

I am sorry you are having this crap going on.


Ak

Forgot too say, this was in 1991. That was a long time ago. Technology is so much more advanced now and your docs are only looking at the test papers and what they say. They need to use their own minds isn't that the reason they go to College?