Scared Daughter

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Scared Daughter

Postby littlebit » Fri Sep 14, 2007 1:14 pm

Hi, I'm new here, but not to MS.

My mom was diagnosed when I was 8 years old, and I'm 25 now. She's had relapsing remitting for years, she could walk, but tired easily and required a cane.

She tried Avonex for a while, and it didn't do too much, so she went on Copaxone, and it did wonders, she got much stronger. She still had MS symptoms when the weather got very hot, or if she got stressed out, but for the most part she was doing well.

But the bumps and lumps of Copaxone got tiring for her, and she asked her doctor if she could stop. He actually let her.

That was two years ago, and it's been a slow downward spiral since. The MS symptoms got worse and worse, and her neuro did nothing. I was shocked he didn't put her right back on it, as soon as the smallest symptoms started flaring. The past year in particular, her condition worsened.

But then, three weeks ago her legs and hands gave out completely. She can't take care of herself, and at this point my dad and I aren't prepared for that kind of care. The hospital pumped her full of prednisone, which didn't do much but give her 'roid rage.

She transferred to a rehab hospital which claimed to have an MS Clinic with specialists that would help her walk again through physical therapy.

She's been there for two weeks, with no progress. Now they're talking about moving her to a nursing home.

Nursing home?! She's only 57, and was walking on her own only 4 short weeks ago. This is all happening way too fast for my whole family.

It seems like doctors are either avoiding her or giving up on her, and I'm not sure where to turn now. I can care for her at home, but would need to do some remodeling to the house first, so the nursing home would hopefully only be temporary. It just scares me immensely that her condition might not be temporary. I repeat, this is just happening way too fast.

I'm frustrated her neuro let her go off the Copaxone in the first place. I'm confused as to why the doctors only seem to suggest Physical Therapy or Prednisone, what about other MS drugs? I know MS reacts oddly to other diseases, so I'm scared there's something else going on that's triggering the MS that the doctors are just failing to see.

It's scary to see my Mom going through this, she's there mentally 100%, but her body's just giving up. But it seems the doctors are doing the same. Actually, her Neuro hasn't come in to see her once at the other hospitals, he's just left her with the hospital people.

I'm not sure what I'm looking for by posting this here. But I'm not sure where to turn now.
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Postby Lyon » Fri Sep 14, 2007 4:55 pm

Hi littlebit,
It seems ironic, but welcome to the site, despite the terrible reason for finding yourself here. I'm sorry for the situation you and your loved ones are having to endure.

Your Mom's doctors can't "let" or "make" her do anything. What is her attitude about everything that's happening?
Bob
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Postby Loobie » Sat Sep 15, 2007 9:04 am

Hi Littlebit,

If there's one thing I could say is act to her neuro. like you would a customer service person that has had you on hold for an hour. The doctor is obviously not going to take charge, so somebody else must step in. Push, push and push some more. The saying about the squeaky wheel getting the grease could not be more true. Be a pain in the butt until you get some answers. That's my $0.02.

Lew
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Postby Loriyas » Sun Sep 16, 2007 6:50 pm

Littlebit,
I agree 100% with Lew. We HAVE to be our own best advocate and if we can't do it ourselves we need family members to do it for us. If you are getting no satisfaction from the neurologists then take her somewhere that specializes in MS. If you are not satisfied there go somewhere else. Keep on pushing until you find someone who will help. Don't give up or assume that the doctors "know best". Your mom needs you desparately to find the answers. Keep on looking! You and your dad are her best hope. Good luck!!!
Lori
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Postby TwistedHelix » Mon Sep 17, 2007 6:43 am

Hello Littlebit,
Some doctors react especially badly if a patient dares to have a mind of her own: their reaction is a childish, " you refused before, so I'm not going to give you it now", so I agree with the others about finding a more helpful neurologist. Your mother's deterioration does seem fairly rapid and I think you're right to question whether another condition is affecting this – has she had any tests for anything else? – something simple and easily treatable might be to blame.
Two weeks in rehab seems a very short time for them to start talking about a care home – I was in there for nine months!
Do you have any contact with local MS societies? There might be people there who can point you in the direction you need to go and make recommendations, and also offer the support you have to have as a concerned relative.
Bob's question about your mother's attitude to all this is a relevant one: although as the others say it is often necessary to badger neurologists into taking some kind of action, going at it too aggressively isn't always the best way to get a good reaction – depending on their personality, polite but determined persistence is sometimes more humane on the poor devils! Also, and I'm sorry to ask, do you have a good relationship with her? I mean, are you certain you have a complete picture of everything that has been said?
This must be a very worrying time for you, and I hope you can find the information and help you need very soon,
Dom
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Postby MaggieMae » Mon Sep 17, 2007 12:47 pm

Littlebit,

There are neurologist who are using treatments that aren't the usual meds like Avonex or Prednisone. Call a research hospital like John Hopkins. I don't know where you live, but I'm sure there is a research hospital within a reasonable distance from your home. Many doctors will even answer your e-mails. You need to find a doctor who will be aggressive with your mom's treatment.
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