[Erin524]

I had a really bad, and very silent UTI over the past month. The MS symptoms just kept getting worse and worse, so I went to my regular doctor (who no longer takes my insurance because my insurance company, the largest insurance co in the state, refuses to work with the largest healthcare provider in the state anymore)

I'm in the middle of a massive flare. My walking has been getting steadily worse, daily, for the past several weeks. I'm afraid to call the neuro to ask for steroids, because he's refused them before.

I'm afraid to use my insurance for anything because I keep getting bills that are $500+ for one visit. I'm scared to switch to a new doctor, because they wouldn't know me.

I'd switch insurance, but I'm scared to do that too. Afraid the law will get changed, and the law about pre-existing conditions will change again, and I'll end up on government healthcare, which I'm hearing from relatives in the medical profession is even worse than what I have.

Don't think I'm going to make it to Christmas. I finished my antibiotics, and can tell the UTI is better, but it pushed me into a really big flare. I don't think I'll recover from this one. Not only is Christmas going to be ruined for me. I think the rest of my life is ruined.

It's been the worst year. I've been feeling worse and worse all year. Boyfriend dumped me because of the MS (at least that's what it felt like the reason for that was). Now I think I'm getting so bad that I'm going to end up making us either move to a new house, or I'll have to have some fairly intricate modifications made to the house. (I live in a basement)

My holiday is ruined, and I'm going to get blamed for ruining other family members Christmas. (people who don't live here, who think that I'm faking the MS. Kind of hard to fake neurological symptoms)

really starting to hate christmas almost as much as I hate the MS. Because the MS is ruining everything I do, or want to do.

[NurseNancy]

oh erin,

i really feel for you. i wish i was there to give you a tremendous hug and hold your hand to help you fight. don't even give ANY thought to what anyone thinks who doesn't support you. it's not worth any effort on your part and just takes away from the energy you need to get help.

think about any options you have to get medical help. even if it means asking another dr if they could give you any way to get help and even if it wasn't thru them.

do you think turning up in the ER would accomplish anything? do you think if you called the local MS society that they could help you find someone or give you some advice.

please let us know how you are. i care. i wish i could help.

[Lynn]

Gosh Erin

I am so very sorry to hear this - you are painting a pretty dark picture and I wish there was something I could do or say....but I can't, so sending you big hugs and hoping things will improve.

[karousel]

I'm so sorry you're going through all of this.

[Erin524]

It's like spasticity from hell. It's just harder and harder to move.

When I told the physiatrist about it, he just said "we'll watch it". I'm tired of that phrase.

The fatigue seems to be from hell too.

Neuro doesn't ever want to give me steroids, and the last time I asked about medications, he didn't suggest any.

Kind of stressed out by this entire year. My dad is also having serious problems too. And I've been having to put eye drops in his eye, every hour. I can barely move. His doctor kind of made me feel like it was my fault his eye swelling hadn't gone down. He had emergency eye surgery last week. Just so stressed. Tired.

Think I might need rehab, or occupational therapy fairly soon. It's just getting harder and harder to move around.

[mimimi123]

Hey, Erin <3
I wish i knew anything or anyone that could help.
I can only imagine the mental strain this is beginning to have on you. I know not much is accomplished but i suggest ringing a mental health helpline and talking things through, keep putting your thoughts and worries out in the open so its not swirling around in your mind, sometimes they might have some steps you can follow, or help you find ways to get more insight to your condition and what you are currently experiencing. I'm not sure how things are done in another country, where are you from?
Where you are mentioning rehab, if you think they arn't taking you seriously, you can find some community help as well, I'm sorry I'm being vague but not sure how things are done where you are. I suggest, pain relief and spending time with a special friend or family. Deep breath, you are strong xx If you like, you can message me and i can ask someone experiencing MS what they reckon

[SallyC]

I'm sorry Erin. When I fell and the bottom fell out for me, I called 911 to take me to ER.
From there I went to rehab, right there in the same great hospital. Maybe that is
what you should do.

[doydie]

Erin, I don't know how old you are but there are rehab facilities for just that purpose, short term inpatient care that could help get that UTI taken care of and do physical therapy also. Now I know that some of them are i nursing homes but there are other kinds also. Is there a local MS society there you could ring and get advice, just have a shoulder to lean on, vent with or know how to help you. You and only you are responsible for your emotions, not any body else's. If your boyfriend dumped you, that is his problem. Yes, living in a lower level is a problem for you but your parents aren't in the best of health either, maybe a move is in order. Are you on Medicare? When Mom was living in her assisted living facility, there were two young people there also just to have the physical therapy and their meals taken care of. Sometimes you do have to swallow your pride in order to get your health back. HUGE HUGS TO YOU

[karousel]

Definitely contact the National MS Society in your area. I didn't even think to say contact them until the others mentioned it (must be a bad thinking day for me).

The amount of resources and help available through the NMSS is phenomenal. I've been volunteering there and am still learning about everything they have to offer.

[NurseNancy]

erin,

how are you today?

i hate to make this suggestion as i know it won't be easy but it sounds like you need another dr. someone who will listen to you and take your condition seriously.