Gone and back--diagnosis frustration
 

I joined last year I think, before I had any diagnoses and was frustrated beyond--well, many of you know that feeling.

I finally have a neurologist who is taking my symptoms seriously. Suddenly I have 3 diagnoses to deal with and am going for more tests to confirm the diagnoses and probably make sure 2 of them are correct.

It took a rheumatologist, neuro-opthalmologist, and neurologist, just 3 visits to diagnose me with Trigeminal Neuralgia. I am taking 200mg of Tegretol, 3x a day. Right now that is working well. I also eat a semi-soft diet and avoid triggers as much as possible.

Right now I have diagnoses of Sensory Ataxia and Orthostatic Hypotension. I go for a tilt-table test next month. I will also have a 2nd EMG and possibly a Brain MRI of my facial blood vessels to see if there is an vascular compression of my facial nerves.

I am fairly disabled by all of this yet keep trying to move forward. I don't know how to tell the doctor how all these symptoms are impacting my life--I did with the balance/fainting stuff, but think I was too afraid of her thinking me crazy or complaining or lazy if I told her. I didn't want to get told I was crazy by one more doctor. I couldn't handle that.

Right now, I never know how I will feel and what I will be able to do day from day. I am frustrated.

I am 55, my career is on hold. Today is not a good day. I feel very alone with these disorders and not sure how to help my family and friends undertand it either. My usually positive personality is buried under this. I just want a diagnosis and want it now. Not patient anymore at all.

Bad day today--thanks for reading. Look forward to posting and reading what you all are posting.

lifesaver

lifesaver,

i'm sorry you're going thru all this. going thru the journey of diagnosis and tests is very stressful. please give yourself some slack and be gentle with yourself.

you might try keeping a sx (symptom) journal for your dr.
it sounds like these drs are taking you seriously so please be honest with them. it will help them help you.

you also might consider taking a friend or family member with you to one of your appts. an extra set of ears can be helpful.

good luck. i hope they can help you to feel better. please keep us updated.

Welcome to NT

It is frustrating, I know. Don't give up. You're your best advocate. It's hard to get the right treatment if our case is a little complex. A new doc could be the break you're looking for. I pray you get a dx and treatment plan quickly.

See ya around the board.

Welcome.

Im sorry you are feeling so alone.:hug:

http://i489.photobucket.com/albums/r...yizes/hugs.jpg

Hello lifesaver, and welcome back to NT! You probably remember that there are a lot of friendly, caring, and helpful people here.

I hope that today is a better day for you. We all have our ups and downs, and sometimes just posting what you're feeling helps. :)

Keep asking questions? No matter how silly they mite seem at first.
 

I'd encourage you to take a peek at the different forums you might think could be part of your issues and even, some that you might be afraid to explore?
Often times, IF CAUGHT early? LOTS of problems can be alleviated or even avoided with the persistence you are showing.
It took me fourteen months from initial diagnosis to a different one? And it took a heap of tests, [MRI's Cat Scans, Blood Work ups [MANY] and a spinal tap] I KNEW that things werent' right and going downhill and faster than I liked. BUT, by keeping at it? And getting second and third opinions by 'specialists' as I zeroed in on things that I was diagnosed and treated!
You can learn a LOT from reading about the different issues. You learn what questions to ask and also about what tests are done [these are usually in the 'sticky's at the top of any forum] Learn 'doc speak'! Docs don't speak 'people speak' for some unknown reason this is a lost skill.
Yeah, those balance issues? Nothing like falling HARD then having to have EMT's have a problem in extricating you from a VERY small bathroom? NOT FUN! And also a trifle embarassing? As I was going into the bath to shower???? Need I say more? It wasn't 'pretty'.
This is ALL SCARY rite now? But keep faith that testing, and maybe more testing will determine your problems. Learn about possible causes and then be a trifle more informed to ask the KEY questions of docs about what all the fruitcakes is going on! LEARN, turn energies there if you can, as that can help you get the key info from docs you need to get treated.
I truly hope it's something simple? But I'm guessing not. Take a look at any and all meds you mite be on and read the 'fine print' [as I call it?] on the side effects...then if you are on more than one? Call both companies [800 phone#'s are WONDERFUL!] and check out if they are compatable or not... sometimes its that simple.
Web up 'prescribing information insert drug name here'
I hope this all helps, but don't give up on your instincts that 'something isn't RIGHT!'.
Let us all know how you do and soon, please - j

Here to listen
 

Many people find being here makes them feel less alone - I hope you'll feel that way too.

Welcome back!!!!!!