My MRI results came back negative for MS. It is good but at the same time I am frustrated because I still have symptoms.

The neuro is clueless to what is wrong with me though. That is not a relief and my symptoms are getting worse. Some days are better than others. He told me if the test came back negative that I would just have to live with the symptoms. Well, I guess I'm stuck then. Now what do I do? To make things even worse, my hearing is getting worse too. I have severe hearing loss 65% in one ear and 75-80% in the other ear. Right now I can't hear anything because one of my hearing aides broke so I'm without one and with just one, it is not a very good scenario.

My family is not very supportive of how I feel, including my own DH. I spend a lot of time journaling- or chicken peck writing or typing slowly on the computer journaling to sort out my emotions and feelings about things. I have no one to talk to except my therapist who I only get to see once a month. Even my twin sister doesn't want to hear about it. She just tells me to go to the Mayo clinic and my DH won't have any part of that.

Is anyone else in my shoes here? What do you do? Does this get any better? What happens from here? I feel like a torn stuffed animal with no one to help sew me up.

Thank you for listening. I feel bad for posting but I don't have anywhere else to post at. I am in no where land.

Coffeegirl

I'd get a second opinion. MRI's are not the only tool used to determine an MS dx. And it sounds like your Neuro isn't willing to try and figure out what's going on. Obviously something is causing your sx. I'd keep looking till I found a doctor that would listen to me. Good luck!

Sorry to hear about the frustration about not knowing what's going on.

Was the MRI of the brain only or was the spine included?

Have you talked to your PCP about maybe seeing a rheumatologist or an immunologist to see if they can help ya find the answers? It's just an idea. Would totally understand if you wish to take a break from docs right now.

Hope you feel better soon.

Sorry, Coffeegirl.. It sounds like the same old story...An inept unfeeling Neuro with a God complex not using every tool to help his/her patient, come to a DX.

You sound like a strong person, but weakened by this horrible debachle. Gather your strength and find an MS specialist Neuro, Neuro Opthomologist or Neuro Rheumy and get a second opinion.

You could take a breather for awhile, but I certainly wouldn't let this Neuro get by with dropping you, this way....what a jerk.

It's hard for Family to understand especially, since your illness is not being validated by your Doc. They are likely convinced, it is all in your head..

Keep coming here and we will support you in any way we can. I hope DH does what he should do and stand by you and support you. I understand your frustration and sadness. I hope you get answers soon.

Thank you for replying to my post ladies. You all have been very helpful and your comments are very much appreciated.

My DH is not being very supportive right now. He is the type of person that is head strong and if is told something from a specialist, you believe what they say the first time and don't go any further from that point because the test proved the point being even though things seem otherwise. My DH has no empathy and it makes me very angry. I have no empathy from anyone but my twin sister but she is frustrated with me right now because she wants me to get a second opinion but my DH won't see of it and thinks that my current neuro is right on the nose with his dx-nothing. He dx'd me with migraines but we knew I already had headache problems which needed to be addressed and that wasn't what I really went to see him so he downplayed all of the other symptoms that I had which really upset me.

I saw a different neuro at the other hospital in our city and had a very bad experience with the guy. After hearing what you all had to say I will take a break from this doctor thing. But, I hope that in the meantime, hopefully my DH will come around. I feel like I have absolutely no hope and am cornered with this health issue due to my DH's stubborness.

Also, the neuro clinic we are at is a MS specialty clinic but obviously the neuro that I am seeing isn't one of the specialists that is one of the MS doctors. He has a nice bedside manner but otherwise, I don't know what to think about him due to his decisions. I'm very frustrated- yes indeed.

This community here is very supportive and caring. Even though I don't know where I belong and feel like I belong on the Island of Misfit Toys it is nice knowng that I'm accepted here. Thank you for your kindness.

Coffeegirl

dear CG. welcome. and you are welcome here.
i'm sorry you're going thru all this.
your dr sounds very unresponsive and since he isn't willing to understand and validate what you're saying, i too say to find another. it's just not acceptable.

at least he should tell you he knows something is wrong and will con't to find answers. did he do labwork to rule out other problems?
was the mri with or without contrast.

sometimes in MS lesions can be hard to see. but you can still have sx's (symptoms). i'd encourage you to keep a sx journal. just something simple but that will give you and your dr a timeline to see how your clinical condition is.

also, get a copy of your mri films. they usually put it on a CD. it's free and you have a right to it. you're the patient and it's your legal right.

i wish your dh was more sensitive to how YOU are and not just what the dr says. they can be wrong. or you just might not have the right dr for you.
what does your pcp say? can he/she advocate for you?

and please don't give up on your hearing, or yourself. keep pushing for answers. i dare say that if the tables were turned and your husband was the one having these problems he might feel differently.

please keep in touch with us.
we care.

I'm sorry your DH is not being supportive. Why does he have to "approve" a second opinion?? It's your health that's being evaluated here, not his.....he can either be supportive or not......but if it were me I'd carry on with finding another Neuro and seek your sister's support while doing it since she agrees with getting a second opinion.

I hate it when doctor's downplay sx just because they're too egotistical to admit they don't know what's wrong. A good doctor will admit to not knowing and work to find a way to figure things out. Unfortunately, they are few and far between.

Good luck to you!! And you're always welcome here.....never think that you aren't.

Sorry to hear the test results didn't get you any closer to a dx.

Did the MRI show ANY lesions, even just ones that 'could' be attributed to your migraines? Did they do a MRI of the brain and spine? Did you get copies of the results?

I went back to look at your symptoms, and am wondering if some of them could be attributable to the Topamax or any of other drug you might be on. Did you keep a diary of your symptoms, when they came on & any that have fluxuated?

When it comes to MS, most (but not all) of us start out as RRMS, and in the early years, are not normally left with residual symptoms, like you seem to have been. We have attacks, we recover (often 100%), then we go on reasonably healthy until the next time. That's why it often takes years to get a dx (dissemination in "time"), even IF we do prove to have lesions.

As others have said sometimes these things just take time, and unfortunately not a lot can be done about that. Even when we do get a dx, the best we can hope for is to find a method or med that will help relieve some of our symptoms ... and the rest we must learn to live with.

Cherie