Feels like I'm going crazy! MS

[Sydlolodre]

I know my post is similiar to others, but I have to vent and ask questions from people w/ experience. (and my family are sick of hearing me)   About two months ago I woke up with my left eye slightly blurry and my right eye extremely blurry and immediatly went to the optomitrist. To make a long story short, I eventually ended up in the ER where I was poked, prodded and scanned and all my labs came back normal, except for my MRI that showed multiple lesions on my brain and spine. The next morning I was sent to a neurologist and that's when I first heard about MS. He didn't really explain too much about it and ordered a lumbar punture for the next day (an experience that I wish to never have again!) and said to come back to the office in 17 days for the test results.
I knew nothing about MS so in that 17 days I researched the signs and symptoms related to MS and was, oddly enough, relieved! Finally I knew what's been going on with me!! Over the last four years I had been in and out of doctors offices and hospitals with several of the symptoms I read about about and all the doctors were ever able to tell me is that I may have a panic disorder!  
There were days that my legs felt like they were filled with lead and it took everything in me just to walk and get the mail. I have numbness and tingling in my face, mouth, arms and legs that comes and goes. I have muscle spasm and tightness in my chest and rib cage that radiate around to my back. (several tests on my heart and lungs that have all come back normal) There are days go by that I am soo dizzy on and off that I don't feel comfortable driving a car. There are days my coordination is off and I have problems writing, typing and even walking!  My memory and attention span are shot most days! I can watch a movie or have a conversation and not be able to tell you what I just watched or what we were just talking about!  I have trouble remembering common, day to day words!   Since this new vision problem started, I can't even enjoy reading a book which is one of my favorite things!  Honestly, I felt like I was going crazy and everything seemed to be getting worse as the months went by! There were times that I would just sit home and cry because I couldn't go to the zoo or park with my family because I knew I wouldn't be able to do all of the walking. I think sometimes they thought I was just being lazy and it breaks my heart and frustrates me!
On my way to my appointmentecause my vision is so bad certain days, I can't even enjoy reading a book! yesterday I was so excited because I would finally have answers! I was sure I would get my diagnosis, start treatments and finally start living life again!  The doctor can in and informed me that my lumbar punture results came back normal, that I may be at risk of developing MS at a later date and to come back to his office in a year!  No other testing, no medication to help with the symptoms, NOTHING! I felt like I was punched in the stomach! My MRI looks like a Light Bright!   I am so mad and I can't stop crying! I can't imagine another year like this!  I have three kids (ages 2, 4 and 12). My husband is a corrections officer and we recently moved to be closer to the prison he works at, making us 2 hours from any friends and family that I can count on!
Please does anyone have any advice or information or can they share any experience that could help!

[Sydlolodre]

I was able to get the appointment w/ the new Neurologist so quickly because my mother-in-law's sister used to work w/ her and was able to get me in.  The appointment is in the morning and I have all of my tests results, past lab work and medical records from the last four years, and a list of symptoms and questions written down.
The first neurologist said he didn't need to see me back for a year but I don't want to go through anther year of this.  From what I've read, it sounds a lot like MS but if it's not I don't want to wait another year to see just in case something else is going on.
He never discuseed CIS with me really.  The only new symptoms that popped up was the vision loss (which prompted the MRI and spinal).  The other symptoms have been going on for the last four years.    I have noticed that the symptoms have become more pronounced  and more often in the last year.  My dizziness and foggy mind have really become a problem for me and it's really starting to affect my ability to take care of my children.    I just want to feel normal again!

[sllowe]

Oh my!

If the doctor felt this was your first attack, and you were at risk of developing MS, then CIS should have been discussed!
Are you going to get that 2nd opinion we are all up in arms about?
Please don't feel bad about venting, and asking questions! It's why we are here!

I'm curious as to when this doc asked to see you back? Was a follow-up arranged? If so, ask this doctor specifically he/she thinks this was an isolated attack, and if so, tell doc from what you've read you understand the meds work best when started early!

So sorry you were left w/no options except for a named risk. All the studies recommend treating CIS with disease modifying drugs.
Welcome to the forum :)
-Shell

[cutie4747]

I am in the same boat - though I had positive LP and neg MRI so the Neuro is playing "wait-and-see" game too - which totally appreciate given my circumstance - but yours is situation seems much more straight foward so very strange. I find the tracker here helps as I play the waiting game because I will actually be the first one to forget my symptoms (surprise surprise) when it comes time for follow-up.
Here is hoping a second opinion comes quickly! :)  

[Jifr]

Wow. That's pretty quick to get in to see an ms specialist!!  I see a specialist and it took months to get an initial visit with them.

I think an ms specialist is a lot more willing to listen and answer questions.  I've seen a lot of neuros and most seemed to be scared of ms patients.  It's like they don't know what to do with us.  

Write your questions and concerns down and take your list with you. Every doc I saw that I took notes to really appreciated it and told me so.  It might help ease your mind, too.

My other recommendation? Research, research, research.  Don't let a doc shoo you away because they think they can pull a quick one on you.  Let them know - they work for you and you want to understand.

Keep us posted. I hope you get all the answers you need!

Take care.

.Jen.

[Sydlolodre]

New symptom started last night.  I noticed that I had petechiae spots on my chest and arms. They weren't all grouped together, just spots here and there.  Anyone else experience this?

[Tammy826]

I agree!!! I was tested for Lymes when all this started with me & the ELISA test was used (its known to only be 50% accurate). I tested negative. Then my new neuro used the western blot & I tested positive for lymes. I was also previously told that lymes wasn't around here either but its everywhere its just more concentrated in some areas. My neuro thinks that the lymes opened the door for the MS. He said I was probably going to have MS anyway but it sped things along. If he is already doing this , I would find another Dr.!!

[jujuminx]

Lymes is indeed one of the mimics of MS and is what dr's are suppose to test for when MS is suspected.

That dr was an idiot.  Really, I strongly encourage you to report him. He has no business practicing medicine.

Good for you for speaking up for yourself.

Julie

[Sydlolodre]

What also made me angry during my appointment was that when I informed him that the day before my spinal I had a blood test to see if I had Lymes disease (negative), he made me feel like an idiot saying "That was a waste of your time because I could have told you that you don't have Lymes. There is no Lymes around here."    Like I said, I live in the country and there are ticks everywhere!  Also I have read that Lymes can mimic MS so I thought it would be a good idea to make sure and possibly exclude that as a possible culprit! My husband works w/ people that have had Lymes so I know we have it in our area!

[Tammy826]

My LP wasa also negative but based on my symptoms & my MRI also looks like a light bright (lol) I was finally diagnosed this past Friday with both MS & Lymes disease. The neuro that gave me the dx was the 6th I have seen. I don't know how close you are to Chicago but I have a friend who is one of the top 20 neuros in the country. I would have seen him myself but couldn't afford the travel, although I did send him my MRI CD & he has told me all along its MS. If you want his name just message me.I hope things get better for you!! God bless you & yours!!!
                                                       Tammy

[Sydlolodre]

Thank you guys so much!  I have an appointment with a new neurologist on Tuesday that specializes in MS and was informed that my first appointment will be 1 1/2-2 hours! That's much more than the two appointments I had w/ my previous neuro that lasted no longer than three minutes combined! I initially went to the first doctor because he was the only one located within an hour of us! (we live in a "country area" and are limited in our doctor selection) I'm driving over two hours to see this new doctor so I hope it will be worth it!
I hope and pray that this time I will get answers!  That appointment left me so disheartened.

[jujuminx]

GET A NEW DR!!!!!!!!!!!  The one you saw doesn't know what he is doing.  The fact of the matter is there is very few things other than MS that cause spinal lesions and you have multiple on spine and brain.

Unbelieveable. I just cannot believe this goofball you saw. I would report the guy. He has NO idea what he is doing.  LP is not a definative test! I never had one and have been dx with MS based on MRI's and symptoms.

WT heck, this makes me so spitting mad.

You gotta pick yourself up and get your test results to another dr, a neurologist. Get reommendations from friends or other dr's in your area you trust.  There are treatments and drugs to help calm your symptoms and help slow the progression but first you need a diagnosis.  

Julie

[Mip9030]

Def get a second opinion. I was diagnosed without a spinal tap. Hang in there!

[angelbum31]

im totally in the same boat too . its so frusrating it just makes me angry the lack of care we get !

[rogers5]

I would definitely get a second opinion.  Sounds like your nuero is basing everything on the LP, and ignoring/not beleiving your account of symptoms. Lesions on the brain and spine.. get a second opinion, you need to get help now. Take things into your own hands you have a family to look after.  
Lots of love to you

[jensequitur]

Personally I think that you didn't get a very good neuro.  With multiple lesions in brain and spine, I think a diagnosis of MS would have been appropriate.  Check out the health page for the McDonald Criteria.  

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36

And it may seem a little incomprehensible at first.  Three things to remember:  dissemination in space, which means evidence that the disease has attacked more than one area.  Dissemination in time, which means more than one attack.  And exclusion of any better explanation for symptoms (blood tests for lymes, heavy metal poisoning, lupus, etc.)  

But the biggest chunk of info you need is this:

You need to have 3 of the following 4 things:

1 (one) contrast-enhancing lesion of the brain or spinal cord.  If no enhancing lesion, then need 9 T2 hyperintense lesions in brain or spine.

1 infratentorial lesion or a cord lesion (this means under the tentorium, which is the membrane on which the larger cerebrum sits.  Below the tentorium is the cerebellum, brainstem and spinal cord.)

1 (one) or more juxtacortical lesions (this involves nerve fibers - called U-fibers - that extend from the white matter in the subcortical area through the boundary with the cortex of the gray matter)

3 or more periventricular lesions (these are lesions sitting adjacent or very close to the ventricles)

important note:  Individual cord lesions can substitute along with individual brain lesions to reach the required number of T2 lesions.

____________________

So if you have lesions in your brain and spine, then you most likely already qualify without a spinal tap.

So find a new neuro!  Make sure you have all those tests you've taken.

[coulditbestress661]

OMG! I have the same problem! everything you listed I have experience in the past few years and my GP say its stress. Im waiting to go see a neurologist but Im glad to hear Im not alone.
Thanks

[Sydlolodre]

Sorry, the beginning of my last paragraph got "oopsed up"