New to this site, but not to LIMBOLAND

My story is quite long and I will try to make it as short as possible.  It all started 11 years ago with Chronic headaches that I had 80+% of the time.  As time went on I was set to a Rheumatologist who DX'ed me with Fibromyalgia and other Central Nervous System Issues.  As time progressed I was put in the hospital twice for my headaches and one time I was in the hospital for 3 weeks in a Headache Unit.  They did a Lumbar Puncture to rule out low fluid and some other things and for some reason they did an MS profile.  I was told I had 4+ O-bands present and I was to see a MS Specialist immediately.  I have had numerous MRI's that have come back clean, but I have since hd 2 more Lumbar Punctures and I was found to have 3 bands on the second and 2 bands on the 3rd...  

I was sent to an Infectious Disease Dr. to rule out issues like Lymes Disease.  I was found to be clean.  I have progressively gotten worse.  I have terrible brain fog, I have a numb patch on my back that has defined borders.  It truly feels like someone taped a kick me sign to the middle of my back.  This might last for 1 month and then be gone for 2-3 months and then come back in a smaller area.  I stumble on a regular basis and I have had a terrible bout of Vertigo that lasted 4 days, I could not move without holding onto the walls.  Once that severe vertigo past, I know have problems with closing my eyes, example in the shower and washing my hair.  I get dizzy and have to lean against the side of the shower.  In regards to showering I have a terrible problem washing my hair.. I have to take a break because my arms cant take it.  Same thing with blow drying my hair and I have quit coloring my hair because I cant keep my arms up long enough to apply the color.

The headaches have continued but lessened a bit after nearly 11 years.  I have terrible insomnia, Restless Leg Syndrome, occasionally tingling in my hands and feet and numbness in my finger tips.  My vision is declining quickly, I cant put my finger on it, but it like a combination of blurred and double vision.  Due to the insomnia I fall asleep at  the drop of a hat except when I should.  I can be driving and get so tired I have to switch drivers or pull over.  It happens in less than a minute, if I feel it coming I had better get off the road.  My balance *****.. if I squat down I usually fall backwards.  I have a very hard time getting up bleachers at the high school.  my legs are not strong enough to push myself up.  I have to side step or sit on the bottom.  If I squat down to get something off a low shelf, I sometimes cant get up.. My legs just have no strength to push me up.

I have been tested for Lupus numerous times, seizure disorders, Infectious Diseases,  Allergies, you name I have had it done.  All MRI's are clean, but the LP's are positive.  I was told by 2 Dr's that it is MS, but neither are Neuro or MS Specialist.  They would not make the official DX.  I went to a new Neuro who is 71 years old and he said if he had seen me 20 years ago he would have said MS without a doubt, but the MRI's cause him to hesitate.  I asked if I could be in the 5-10% that never sow lesions and he said yes..  I do need a test that has never been done and that is the Evoked Potentials.  That is scheduled within the month.  I got frustrated with the DR when he said I would be positive for MS 20 years ago but he was hesitant now.  I looked at him and said "Then what is eating away on the myelin in my brain?  I would not have O-Bands unless there was demyelination taking place and I have known of the positive test for 5 years  He said he had no idea but to come back in 6 months.  I got pretty heated and so did my husband..  I said what happens in 10 years of this demyelination if it goes unchecked or untreated????  I am sure I have missed several symptoms, but what are your thoughts???

[HVAC]

If it were me I would go to a MS Specialist. The reason you need the MRI in my opinion is the insurance companies. 20 years ago they had no MRIs. All my tests including  4 MRIs were abnormal and showed MS and I got the "You will be diagnosed with MS some day". That made me crazy. It turned out for me I had a form of MS I have the Drugs do not work on anyway. No drug actually stops MS progression. I thought I would be diagnosed and the Doctors would turn around and fix it but for me that did not happen. MY life goes no about the same. They still do not know much about my symptoms.

Some people are diagnosed quickly some like me take decades. I say in the next few years they will have better imaging techniques for diagnosis. The Researchers still do not know exactly what MS is. Know they are trying to learn how progression happens and find a way to stop it. They have nothing to stop progression now just drugs that slow it.

Good luck and keep us posted.

Alex

[supermum_ms]

Hi and welcome to our little corner of the web, you might like to check out our health pages, top right of your screen, the yellow icon. You'll find many of the answers to your questions and even some you've never thought of, well worth reading.

My thoughts are jumbled, usually its the old school neuro's that will dx with out MRI evidence, this sitting on the fence isn't in your best interest at all. I would recommend you find an MS specialist, one that knows everything there is to know about MS.

I know you've had MRI's but what strength were they? open or closed? MS protocol or not? It often makes a difference, MRI's and not all the same. I was told by my first neuro i had a perfect brain, no lessions but when I got my hands on the report and a copy of the MRI, that was not true at all, the tech didn't count the number of lesions just labled the number as chronic lol Pefect my assteroid! Neuro's sometimes dont know what they are talking about.

There are other conditions apart from MS that has O bands though i can't off hand remember the others. The thing that is confusing about your results is that they are reducing in number, which seems really odd because you usually add not loose. Hopefully someone will understand what thats all about, if not the health pages has a good article about O bands that might help.

Get a another opinion!

Cheers........JJ  

[Sidesteps]

WOW! I'm new to this but I could have written your post (without ten years of tests.)  

How about you and I make a deal? We both agree to stay assertive and find doctors who will listen.