I am TOTALLY FREAKING OUT! :( Frustrated.

[Brittan]

So much ha happened in the last while ... I still don't now which way I am going. My symptoms are getting worse and I have minimal help from doctors due to their lack of knowledge on anything. I was at the doctors twice this week.

One stupid doctor had me waiting in the waiting room for 1.5 hrs by that time I was in so much pain my eyes were watering up. They finally called my name and I had problems standing and kept falling to the side as I walked through the door I hit the door way and dragged my self around it and I tried to straighten up so I could walk without leaning on the wall which I was able to do but was still falling to the side. By the time I talked to the doc and was ready to leave I struggled to stand up then I struggled hard to maintain my balance ... I couldn't. My mom basically dragged me out of the office as people gawked in horror w/ others asking are you okay and I quickly replied yes.

Then a few days later I had another appt the wait time wasn't nearly as long but I could feel the tears coming to my eyes. Once again I got up leaning/falling to the right and got in the room and sat down and still felt very unbalanced. Once again the longer I sat the pain intensified by the time the doc came in I was in tears and I couldn't control them they just kept pouring out. This time my mom brought her walker which I was able to use but was still being pulled to the right ... it was horrific.

I am getting worse and it's scaring the hell out of my. I don't know if it is flaring up because even at home I am falling into walls and everything a lot more then say a week ago. I am having more problems walking as well. Keep in mind I very rarely cry once in a blue moon and never in front of a doctor ... just totally uncontrollable.

I don't know what to do anymore. I just want to give up and say forget doctors - tired of all the cook book doctors. Ow you have balance issues? Who cares they don't as I slam into a wall. What is it going to take before a doctor actyally does their job and find out exactly why this is happening to me. I've been ruled in for various illnesses only to be ruled out by other doctors. In out, in out ...

I stopped seeing doctors 15 years ago because they were useless and here we are again back to useless docs ... maybe I'll take another break and just wait until I end up in the hospital again then maybe they'll diagnose something ... but who am I kidding hospitals are not like they used to be. Before I know I will be on my death bed and they will still be saying the same crap with no diagnosis because they don't want to look any further than their cook books for a diagnosis.

I just feel so awful, I am home bound, unable to drive, unable to walk straight, and with every passing day I am getting worse ... I am just tired, tired. I seriously have no life ... it was all taken from me when I was hit with what ever illness this is. I am barely surviving - I don't understand how someone can be in sooooooo much pain and still live.

If I didn't have kids I'd most likely stay in bed and wither away. But that's not an option my boys need me especially my youngest who has cerebral palsy so I teach/assist him through the whole day.

I am just so frustrated that it is taking so long to find what I am suffering from. I am tired of feeling like I am dying everyday. My blood work, bp, hr is all out of whack and still the docs have no clue.

Sincerely,
Hopeless in Maryland

[tinglytoes]

Have you seen a neurologist yet? Have you been to the ER?

It's sad, but sometimes you have to be an insanely squeaky wheel in order to get the attention you need.

If you feel you are going downhill fast, you need to keep pushing and demanding some answers.

Have you had an MRI? It sounds like you have many health issues that may be making it hard for doctor's to figure out.

I am thinking of you and hopefully you can find a doctor that will give you the care that you need.

[Karenkay]

Brittan,

I totally understand how you feel about cook book doctors, btw I love that term and am totally stealing it. I've had enough too. They can't do anything, they can't tell you anything. They don't help. I've decided that the only thing they know, is that they don't know.

The last time I saw Dr neuro, MS is stable and because I'm severely depressed, that's the reason my walking is getting worse.

[Seasha]

I stopped seeing doctors 15 years ago because they were useless and here we are again back to useless docs ... maybe I'll take another break and just wait until I end up in the hospital again then maybe they'll diagnose something

Hi Brittan - you recently posted in a reply that you were diagnosed with Chiari Malformation (in your signature) and some of CM's symptoms are similar to MS (like balance problems!)

http://www.msworld.org/forum/showthr...i-Malformation

What have you learned about this and what are the Doctor's recommendations for treating this?? Surgery maybe?

Sorry you are having serious problems and hope things will get better!

[Mamabug]

Have you seen a neurologist yet? Have you been to the ER?

It's sad, but sometimes you have to be an insanely squeaky wheel in order to get the attention you need.

If you feel you are going downhill fast, you need to keep pushing and demanding some answers.

Have you had an MRI? It sounds like you have many health issues that may be making it hard for doctor's to figure out.

I am thinking of you and hopefully you can find a doctor that will give you the care that you need.

I echo some of what tinglytoes says. I think you need a new doctor. I don't know if you are currently seeing a neurologist, but that would be imperative, in my opinion. Possibly an MS Specialist, possibly at a teaching hospital, even though I think you've said, in the past, that you are still in limbo. An MS Specialist might be able to rule out other things and eventually rule in MS, if that's what it is. And, if, in the process of attempting to rule out other things, something other than MS is "ruled in", then you'll have your dx.

I really think that pushing for a dx would be my biggest strategy. Once you are dx'd, a treatment can begin.

Falling into walls and getting worse would concern me in a major way. That might be worth a trip to the ER.

Even prior to any dx, steroids are often used to treat what might be an ongoing flare in whatever it is you have. I was given steroids by a primary care provider after months of getting worse when I was still in limbo and my neuro wasn't doing anything except looking for a dx. When I went to Mayo Clinic, a month or so later, they increased my dose of steroids. I think they are what got me out of what might have otherwise been "the flare that never ends".

However, in the meantime, symptom management is certainly a question you can ask about.