Hello To All

[littlemaya]

I haven't been diagnosed as yet. In my mind, the diagnosis is just a formality. I expect that my MS is in the advanced stages, what with twelve classic symptoms and more popping up each week.

I had to talk my doctor into ordering an MRI over a series of visits. Every day has been an eternity for the past three years; I had to quit working nine years ago; and I suspect that I've had this disease at least twenty years. Any lay person out there would consider this unacceptable, so why do the majority of people in health care go out of their way to deny the truth?

I hope to be a help to others, just as I expect some of you will help me navigate this challenge. My thanks in advance.

littlemaya

[littlemaya]

It's me again

Unable to sleep - anyone else having that problem?

I guess I'll go into a little more detail so I too can get one of those friendly welcomes.

My MRI is scheduled for February 6. The order went in on October 25 and I had to request the fax be sent to Radiology six times before it "took." It's hard not to fall apart when so much is at stake - when every day without a diagnosis and a treatment plan in place feels like an eternity.

I will be 60 next month. I've been taking care of my husband since 1997. He has had four strokes, is legally blind, has COPD, Diabetes, Congestive Heart Failure, Myasthenia Gravis and dual vocal chord paralysis. He is a sweetheart, but doesn't understand why I can't take care of him the way I used to. He requires a good deal of patience, and I'm sorry to say I've been in short supply for quite awhile. The guilt is palpable.

Efforts to get help caring for him have been all in vain, as I am not considered disabled at this point. Between caring for him, a dog, a house, the bills and the car, I am completely overwhelmed.

I have been trying to get a diagnosis for 12 classic MS symptoms since April 2011. I had to give up a job I loved nine years ago due to extreme fatigue and severe spondylosis (arthritis throughout my back, two bulging disks, several compression fractures). Since the average person is fatigued these days, and many have back problems, there hasn't been a lot of compassion coming my way. I've lost friends and some family members treat me in a very demeaning manner.

The past three years have been a kind of nightmare as the symptoms have multiplied like rabbits and doctors have misdiagnosed me twice, then refused to admit their mistakes. I've been in the ER twice and had to deal with insults when I desperately needed concern and care. It's frustrating, humiliating, and unfortunately breeds confusion and bitterness.

I'm one of those people who just wants to get the official diagnosis. I don't expect miracles, but feeling 50% better once in awhile, and getting some compassion along the way, would certainly go a long way.

littlemaya

[tracibk]

oh my goodness!! You have a lot on your plate!! I hope you get a dx when you get your mri.......which I can't believe you need to wait until Feb?!?! There's a lot of info and personal experiences here and I hope you find some posts on the board that will help! I wish you the best!

[aspen]

So sorry ... and there are others who are well versed in interesting responses in ER and by specialists ... limbo is an icky place to be.

Have you had a previous mri?

Sorry that you've been in it for the long haul already. Be strong.

[misslux]

Hi and welcome. I hope you get some news soon.

[littlemaya]

It's me again II

I appreciate it so much. I hope we'll talk again soon.

littlemaya

[Kimba22]

Hi littlemaya,

What a sweet name and welcome to MS World. Wow. It sounds like you have more than your fair to deal with. I don't know who wouldn't be overwhelmed.

I'm glad to hear you finally have a MRI date now, just sorry it's not sooner. There have been times drs. orders, test results, referrals, etc. have been lost for me, too. Or, someone is just dragging their feet. It's frustrating. I do hope you get some answers soon. Being in limbo is hard.

Bless you for taking care of your husband all these years. I can't imagine how hard it must be as his caregiver, and then not to feel well yourself.

I don't have any great words of advice for you, except I hope you'll take a few brief moments during the day for some deep breaths. And, venting here might help too. Hopefully, our virtual (((hugs))) will help you continue to get through each day.

Best wishes,

[zeak]

littlemaya

(((HUGS)))) So so sorry to hear the trouble you are having getting a dx. Many of us have been thru the same and some are also fighting the fight, but persisance will pay off. I also am 58+, caretaker for hubby of 2 strokes, heart condition, diabetic, legally blind (1 eye), and a stubborn but loving man. Now he is stepping up to the plate and helping where ever he can,,,,, except NO LAUNDRY for him, he tends to use bleach in everything LOL.
We do what we can and hope for the best. Feel free to come and vent/talk/whatever. That is the purpose of this site. All is welcomed. I've learned quite a bit in the short month I've been on here.

[littlemaya]

Thanks everyone

I've had several MRI's for my back, but never on my brain. I tend to be claustrophobic but I've always managed to get through them. The anticipation is probably the worst part of the experience for me.

Zeak, we have a lot in common. Most of my problems with my husband stem from his stubbornness. He has always been that way, but now that his ability to make good decisions has been compromised, it's like dealing with a headstrong child.

I have a feeling I'll be coming here often, and it is a good feeling.

littlemaya

[zeak]

LITTLEMAYA

come anytime. I too am claustophia (sp) and I demand meds to go into the MRI. I've had 8, yes eight, from the middle of August & first part of Sept. It was worth it to finally get dx'd. Good luck to you and come anytime. I have my email address in my profile if you want to private message, up to u.