New to this...

[Ms.MS]

Hello all. Like a lot of u I had some scary symptoms that led to my dx. I had to go to Cleveland clinic (great place! ) for my official diagnosis. The local hospitals were clueless! I was told it was all in my head but not one test was ran to confirm my "craziness ".

I had got so weak I could no longer stand or walk, severe dysphagia, slurred speech and vision was pretty bad. It was scary! I thought I was dying!

Thank God I got my diagnosis but I could do without the fatigue! That's been my worst part so far.

[dalechilders51]

Dx'ed

Sorry that you were dx'ed with MS but glad you got a timely answer for your symptoms. Also glad you found this site, you are not alone. Visit often for support and questions and answers. Dale

[FourPaws]

I agree that fatigue is the one thing that limits me the most. It is better to have the diagnosis - it's surprising how many dr's default to 'nuts' but if you ask for a psychologist they look at you like you're being unreasonable.

Hang in there!

[suziq38]

When I found out what it might be (either MS or a blockage in my cervical spine) I yelled at my doctor on the phone, I was so angry.
I had been complaining to 3 specialists for 1 1/2 years, and all 3 probably thought that I was a bit of a hypochondriac.

Finally they found the actual blockage (stenosis) in my cervical spine, which looked horrible. My surgeon called my neuro and gyn/oncologist (this happened after my hysterectomy) and told them that their non-response to my complaints were irresponsible. He was referring to a letter that I had written my gyn when he ignored my complaints in a letter that I had forwarded to him via his nurse.

The doctor finally called to apologize.
He knew that my symptoms had worsened during that time, and that he was wrong to ignore me.

Now I have to have a cervical laminectomy if they can rule out MS. Hopefully, I won't suffer more paralysis.

I just feel very weak in the afternoons. My legs get so heavy.

[Fed Up]

Hi Ms MS,
Aren't ya glad it didn't kill ya?

What a process, ehh?

That scares me, talking surgery and feeling so badly.

Do your lungs feel weak, too?

As my day progress's, I have those symptoms, The specialist for M.S. I saw, said: "i have no clue, what they are!"

My voice fades and seems to come from my lungs, instead of my vocal cords. And symptoms progress, similar to yours. I've had a balance issue, since July and I've only had a few days, I considered it tolerable and not of concern.

My doc said, "You are depressed." When I went back for a second visit (the M.S. specialist). She said, "Well, I don't know if maybe it WAS this diagnosis or what?"

I clearly have taken a great deal of counseling. It took me 7 years of psychotherapy, to accept, being unable to work. And I had no diagnosis, at the time! I return for tune ups, too! I see nothing wrong with it. A psychiatrist, may be your, ultimate savior!!

Oh, I told my M.S. doc, then "order" a psych eval, they have TESTS for that too! I know, I've taken them before! And had a 4 hour appointment, for it! I doubt my HMO is going to push, on that one! I go outside their system for that, always have, it is cheaper and I have the history with my therapist. LOL..

Surgery bugs me, to rule out M.S. I've not read this before. Is this some sort of new thing?

I know an M.S. patient (told me he has had M.S. 30 years and is a fairly healthy looking 69 yr old male). About 8 weeks after my ER diagnosis, he phoned me to tell me; Our HMO is "undiagnosing" him and said it is his neck He just had polyps removed from his throat and other factors. Lower back surgery almost 2 years ago.

Somehow, I have a feeling, there is a trend in not diagnosing or "undiagnosing." With Obamacare, we will even receive, less care. It must be expensive on the HMO, to have such an aversion to diagnose people, that were diagnosed, outside their 'systems.'

This is very curious to me. I'll be following this, with earnest interest. Up

[22cyclist]

Fed Up: The Affordable Care Act actually protects those of us who are diagnosed with MS. It provides the opportunity for us to keep our insurances if we had a lifetime limit before, allows us to switch insurances even though we have preexisting conditions (MS), which you can do if you do not like your HMO costs. However, wherever you go you may run into high costs because you are a high cost case. I pay for my own insurance, and have high costs because I cost my insurance a lot of money.

My premiums go up the more money I cost them per year. On years where I cost them less, my premium goes down. In 2014 you can shop around for a better price if you do not like your insurance. That is what the Affordable Care Plan does for you. Read about it.

If you are not yet diagnosed by a neurologist, your costs will be high no matter what, but you are not labeled, so good news. You can still shop around in 2014. Until then the ACA is not in full effect and your HMO is charging you based on your use of their money, and out of network is always more. This has nothing to do with the ACA. This has to do with the parameters your HMO set up.