Don't know whether to keep trying or not.

[unmaestro]

I had my second brain MRI (without contrast on less than a 3 T machine) and still, neurologist won't give me a lumbar puncture, evoked potentials, or any other test besides the ones I've already had (blood work and nerve conduction). Supposedly, in her opinion, you must lose your vision with optic neuritis or have lesions on your brain to ever be considered for MS. They did find some neuropathy in my sensory nerves in my legs. They can't find any reason for it to be in a person of my age (23). I'm so confused, and I'm tired of paying the copays. The last few weeks have been better for me. I've hardly tingled, burned, itched, gone numb, or had much pain at all. Of course, there are still some tingles every other day or so for a few seconds and the l'hermitte's sign is still there. My left eye gets blurry when I get into a hot car or when I get real hot. I don't know, guys. I have an appt. with an MS specialist later this month, but I'm not sure if I want to pursue this anymore. I've begun to believe that I'm crazy or something. That maybe this is all nothing and in my head. That maybe I am making too much of a deal about it. I don't know what else to do. I'm so sick of not knowing!

[Audrey_M]

Finding the right doctor is key and not always easy.

I started experiencing symptoms in July 2002 that affected my ability to function. I did not drive for 3 months because of vision problems and disequilibrium. Went to an internist and then a neurologist who was a complete quack. I had more doctors' appointments in a year and then gave up. CT scan of brain and lumbar puncture at the time revealed no abnormalities.

By 2007 I was ready to get to the root of things, knowing that something was not right. Lyme Disease was ruled out without even testing for it (and I live in East Lyme). Had an MRI of the brain done and neurologist gave me results over the phone; some white spots showing, but not related to my complaints. Could be age (I was 51 at the time). My big mistake was not to request a copy of the radiologist report. I saw it 10 days ago and was shocked. Multiple lesions in various parts of the brain; diagnostic considerations include demyelinating process. Did not go back because son was dealing with severe case of Lyme Disease and was hospitalized.

Missed 2 days of work in past month due to double vision and dizziness. Went to ENT; not vestibular. Told him about MRI and he ordered another. Just saw the report and while there have been no significant changes, it goes into more detail in terms of lesions. "Appearance suggests a demyelinating process."

So I will now pursue this until I get an answer as it impacts my life more and more. In hindsight, this started before 2002 with l'Hermitte's sign, but I didn't know what it was. First few times, it really scared me. After that, I just thought it was part of the body changing with age.

Trust yourself and the signals your body is sending you. Good luck finding a good doctor.

[Celery47]

Could you get a new doctor?  This one doesn't sound very good.  I just wanted to say, I'm 22, I had two clean MRIs under my belt, and my neurologist ordered both the VEPs and the lumbar puncture - just to be sure, you know?  I got positive results on both.  (Well, the VEPs were borderline, but my neuro calls them abnormal, maybe b/c of my age?)  They still don't know what to do with me, but hey, they're not calling me crazy any more!  :P  Your neuro is probably right, based on what I've heard - an MS dx will be VERY difficult without anything showing up on your MRI.  (Whether or not this makes sense, I'm not sure... I've done a bunch of research, and I found a couple studies that report between 3-19% of "clean MRI" people with compelling MS symptoms go on to show lesions within 5-15 years - the 19% is attached to the 15 year study, as you might've guessed - just goes to show, MS lesions can take their time to show up!)  Anyway, even if your neuro is right and you don't have MS, then what if it's something else?  Sounds like they found one red flag (some neuropathy in your legs... in a 23-year-old), that ought to be the point where they start running a bunch of other tests to make sure nothing is overlooked.  I really think you need a new doctor!!

But I hear you - this stuff is exhausting.  Doctors can be SOOOO frustrating.  It's humiliating, painful, expensive, a whole nervous roller coaster...  But it's your health, right?  It's not THEIR health.  I think, really, you have to be your own advocate.

I'm sorry you're going through this!  I'm rooting for you... here's hoping you get a doctor who will get you some answers!

[ack65]

Hi there,

I can so relate.  If you check out some of my earlier posts I was ready to give up too.  It seems like a lot of work to get a dr to diagnose or help you and mostly i really need to conserve my energy.  My husband sounds like yours - he is sure I have a pinched nerve, bladder infection and migraines but NOT ms.  I actually think that idea scares him.  He was also very leary of me conversing with people on this site as he thought i was becomming 'INVESTED" in having ms.  What he can't ignore is that my symptoms are interfering in our daily lives and we need answers.

Please go to the ms specialist.  I remember at one point I told my family I would not go to any more "ologists" as I had seen the cardiologist, rheumatologist, gynechologist, gastrointerologist ...  But then I realized it is important to get a handle on things for my family.

You deserve answers and help - I hope you will hang in there with the rest of us limbolanders.  You are in good company.  Anna

[Quixotic1]

You've hit a point that is surprisingly common.  You do know, don't you, that your neuro is a dodo?  You do need a different person, hopefully one with a better grasp on MS.  And with an appointment coming up, this is not the time to give up the ship, even temporarily.

The refusal to do further testing is ridiculous.  The MS Neuro should see this.

I don't think I would give the new doctor data that you have collected on a "MS Tracker".  I think that would make it seem that you have diagnosed yourself and quite possibly prejudice your visit.  I would convert your data into a timeline and explain that you were having trouble remembering all the stuff in the order that it happened.  Do not refer to relapses, but rather call things episodes or "bouts."

I swore off all doctors about a year before my diagnosis, being sick and tired of docs telling me nothing was wrong.  I changed my mind when my right arm suddenly became useless one night.  It slowly improved, but I realized that something needed to be found, despite my disgust at the repeated humiliation.

I also know that sometimes we don't really want to see the "specialist" because if they dismiss us, what are we going to do?  This makes sense in a perverse way, but we injure only ourselves.  One of our big messages here is that you really do have to kiss a lot of frogs sometimes.

I hope you can hang in there.

Quix

[Queenfan]

I know how you feel.  I'm in the same mood today.  Other than the kids doing the shopping for me, and keeping the house picked up (yeah, you'd think I'd be THANKFUL for this?) there is no support in the house.  The darling hubby thinks that I am just looking for attention, or he keeps telling me that it's not MS or anything else, just some pinched nerves from the onset of cervical stenosis; I seemed to have lost an old friend cause he can't deal w/ issues that affect me in a medical way (don't even start me on that one).  It's raining and dismal outside, and all in all, I could really give a rats' behind about anyone or anything at this point.  I don't want to be touched, talked to, hugged .... anything.  Other than typing to a few folks here, I want to be totally left alone today and the whole thing has made me cranky.

I've not been diagnosed yet.  I'm also on my first neurologist.  One who has blamed everything on the stenosis so far, but 'did' a lumbar puncture (which came up normal), patted me on the head (figuratively) and dosed me with gabapentin (which did nothing).  Told me to come back in 3 months.  That's when I started using the symptom trackers here.  I'm going to print those things up and show him what's been happening.  I don't know if it's MS or not, or if the spinal stenosis can cause everything that's been happening... but I know something is out of sorts and it pisses me off (today, at least).

Sue  

[Ufrustrated2]

>dont take it out on yourself.

indeed, don't do that. hard not too when answers are so elusive, but keep fighting and being your own health advocate. no one else is going to do it, especially the doctors.

i'm just passing on to you what a friend at the NMSS passed on to me, and from personal experience, DONT TAKE IT OUT ON YOURSELF!

hang in there, great folks here who can guide you.

[marymoto]

hi you are definitely not crazy please dont take it out on yourself.i know it is frustrating not knowing i have the same type of symptoms when i get overheated. good luck with your ms specialist later in the month i hope you get answers.