How long did it take to find out?

[Solaire]

     I am new here and at my wits ends.  I have been ill for 10 years and have a diagnosis of Fibromyalgia.  But, within the last year my condition has progressed beyond any FMS symptoms.  Rather than list my numerous symptoms, I'll just say that once I developed a tremor, my primary care physician sent me to a neurologist.  I was given a brain MRI and he found one lesions and "frosting" on the frontal horns...whatever that means.  But he refused to give me any answers and basically told me my problems are psychosomatic.  One year later (time for my next MRI) I changed doctors, who sent me to an MS clinic at a University Hospital.  I have had a brain, neck and spine MRI with and without contrast and am waiting to meet with the neurologist to go over the results next month.  My Primary care physician, whom I corresponded with via an email system thru the hospital, mentioned "spots" but that it didnt look like a demyelinating disease.      
     Within the last month I have developed tingling fingertips and am torn whether to call my doctor or wait it out.  In the back of my mind, I can't help but think that maybe it is all in my head, or that the doctors won't believe me.  So, to get to my question...is this a common experience?  The frustration?  The loss of faith in the medical community?  And how long did you have to wait before you knew what was wrong with you?  So many people, mainly the doctors, don't understand that right now, all I want to know is what's wrong with me...from there I start to move forward, but right now it's like I'm stuck in this cycle.  Ok, Thanks for letting me vent...I also have a husband who thinks I am a drama queen so I don't get to let it out often.

[Solaire]

We recieved another doctor bill yesterday and my husband is ready to end this, but after seeing you posts I am not ready.  I know my body and I know something is wrong and yes, right now all I want is a name to put on the enemy so everyone stops thinking I'm just a crazy hypochondriac and I can move on with feeling better.

So here is a short list of my problems...Tremor, balance problems, limpy walk, memory problems, losing words, finger tingling, problems focusing vision, slurred speech, frigity, bowel urgency, headaches, restless legs, upper back pain, attention problems, fatigue, numbness in various areas on back, hands and feet...There's probably more but I can't remember haha.  Oh and my reflexes are crazy strong, I almost kicked the neurologist when she checked haha.  I seem to have a startled reaction to any sudden sound, even when I see it coming, it's kind of funny.

I am definitelty going to start watching other posts, I just need to remember (work darned brain!).  We are in the process of moving, and with the holidays and my son's Birthday coming up, it's been a fun week!  Thanks again for all the help, it's really helped lift my spirits.

[Quixotic1]

Hi, and another welcome to the forum.  What you are describing is not just a severe case of fibro.  Yes, there "can" be some mild paresthesias seen with fibro, but the correlation with true brain lesions is not strong.

I'm sorry your husband sees drama in what are likely nonending series of symptoms.  I suspect that the diagnosis of Fibro and the social stigma that it has carried plays a large role in that.  The tremor is not at all characteristic of fibro.  The first neurologist appears to be a lazy SOB who had predetermined that you were not going to have "anything."  You are right to leave him in your dust.

My guess is that the neurologist is either incapable of confronting his biases regarding women in pain or pitifully undereducated in the MRI appearances of MS.  The frosting of the ventricular horns is usually called "capping" of the horns and is particularly characteristic of MS.  It's not diagnostic (meaning it doesn't prove MS), but should bring MS to mind in any neurologist.  Heck, it did in me, and I'm just a pediatrician!

Yes, your symptoms are characteristic of MS and once the mimics have been ruled out, MS should be considered strongly.  The positive Babinski test is proof that you have damage in the central nervous system.  The tremors are common in MS.  I just wrote a long post to someone tonight about tremors and treating them.

Have you read the discussion we had this week on anxiety and symptoms and on the reasons for much of the loss of confidence in the medical system?  I will bump it up.  It's called "Psychic Groans - Anxiety or the Real Thing?"  I suggest you read it.  Wonderful thoughts on what you are talking about.

I, for one, would very much like to hear your story and all of your symptoms.  So would most of us here.  I find short posts wich have no information to be much more boring than real posts that tell us who you are and what you are going through.  So do most of the members here.

Welcome again.  We can help you through the difficult times ahead whether a diagnosis comes or not.  You are not alone at all and we all understand the desire for a diagnosis is not the same as the desire for a disease.  You already know there is something very wrong with your body.  You just want a name to put on the enemy - a plan that allows you to move forward.  Put the irresponsible idiot of a doctor behind you.  You know you own body and you know there are answers.  We not only embrace and support those with a diagnosis here; but we also embrace and support those looking for answers.  We can help change your life!

Quix

[Solaire]

Thank you so much.  This site is so helpful!  I no longer feel alone in this struggle.  I have always doubted the FMS diagnosis, it never seemed right to me as I don't have many of the signifying symptoms, like widespread pain (except my upper back is killing me!).  Although I suppose I can't rule FMS out.  My doctors have also mentioned that these problems could be associated with my migraines.  As many of you know, it's hard to live with symptoms like tremors, a slow limpy walk, loss of balance (sometimes I look like I'm drunk), memory problems like forgetting words when talking to people (I often find myself appologizing for my forgetfulness), without understanding why you are having these problems.  

As I thought about my most recent visit to the MS center, I remembered my new neurologist mentioning a postitive Babinski and that my symptoms are suggestive of MS, but that still means nothing without medical tests to back it up.  As LGK54 said, believe in your instinct...mine says there's something else going on, so I will continue to be persistent in seeking an answer.  Expect to see me here more often!  Thank you all for your support and direction thru the site, I feel less down this morning.

[Lulu54]

H Solaire,
I am a big believer in instinct - in fact that's what sent me to the ER about 8 hours before I experienced a heart attack in January.  Those voices inside of us are there for a reason and then we are told all our lives to ignore the voices.

Your instinct tells you something is wrong - don't ignore that and keep pursuing a reason.  I am one of the rare few here who got a dx almost overnight - but my symptoms probably were brewing for 20 + years with me discarding them as "nothing."  Now I have some serious lesions and black holes and a confirmed MS dx.  I just wish I had pursued the answers sooner.  

Your may be FMS, but then again it may be something else.  Hang in there and be patient in the search.

My best, Lulu

[doni54]

Solaire,

Hello, and welcome to the forum. I am also undx and yes it is easy to lose faith in the medical community.  As best I can remember I've been having symptoms for 15-20 yrs, I was told 8 yrs ago at the age of 46, that I was just getting old.

If you will read some of the posts on this forum you will realize that you are in a great place, and share some of the same frustrations as many of us.  We're glad you're here and will we support you through all this.

We have health pages that you can access by clicking on the icon in the top right hand corner of the page.  There is lots and lots of great info and it can help you to understand how to deal with some of the things you are currently going through, and even gives you the knowledge to ask the right questions.

We're all here to help, so just ask us anything, and we will try to answer you as best we can.

Again, we're glad you're here and look forward to getting to know you.  Most of all, you are not alone.

doni

[Rachelinpain]

well, i can not help you much as i have no diagnosis.  i have many of the symptoms of MS but no test results to confirm that.  i am just getting treated for my symptoms at the moment so i know how frustrating it can be.  i know there are a lot of people who have pressed a long time and eventually gotten a diagnosis.  i do know that fibro can cause alot of similar symptoms including "spots" on the brain and parasthesias (tingling, burning, pins and needles, numbness, etc.) i certainly do not think you are crazy!!  it sounds like perhaps you just have a bad case of fibro.  good luck i am suffering with you in search for a proper diagnosis and a husband that thinks i am a drama queen :)  i hope you get some answers and some releif.