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Old 09-01-2009, 08:09 AM #1
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Default Neuro Appointment Rant

Went to my Neuro Appointment yesterday - Vertigo, starting a flare, MRI, and need to find some type of Health Insurance Quick!

He feels Vertigo is pretty intense, he put me in a spin that nearly had me vomit on his shoes! He gave me Klonipin for that.

The standard Neuro testing that he does at each visit and the questions he ask every time he is 100% sure I am heading to a flare - so he put me on Oral Steroids to try to stop the process.

We went through my chart and for the last year and a half I have been on Steroids either oral or IV every 4 - 5 months. While reviewing my chart he feels that since last year at this time I have progressed greatly and he isn't happy with the progression. He wants to see me on some type of medication to slow this process or he feels within two years at this pace my body is going to be a mess.

By the time I left my body was such a mess - I sat in the parking lot for 20 minutes and then drove to my friend David's and had a 2 hour nap. Just couldn't make it back home.

I was pretty depressed sitting there having him tell me that I NEED to do something to slow this down and right now my only option is to get on med's but med's are VERY expensive with no health insurance. Sat there and basically got a lecture from my Neuro on the importance of health insurance and how I need to get some some how.

Now, what to do??

Ok, my rant is over. Thanks for listening (or reading)
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Old 09-01-2009, 08:40 AM #2
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I can relate, Char. They act like it's nothing to just "pick up some health insurance"......yeah, right, I'll do that on my way home when I stop to get milk!

My Neuro had basically the same attitude when I told him I have no health insurance so I won't be coming in every 6 months unless there is a problem - and maybe not even then!

Have you given any thought to trying LDN? It's cheap....I pay about $15 a month for it. I tried the DMD's (Copaxone and Beta) and all I could tell I was getting from them were nasty side effects and a big bill. Nothing has helped calm my sx and give me relief like LDN has. My Neuro won't prescribe it but there are other ways to obtain it that are easy.

I hope you feel better. I'm sure part of it is coming down from the fabulous time you had with AMN and RW.
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Old 09-01-2009, 09:30 AM #3
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Dont you hate it when your neuro or other MDs look at you like "YOU" are the one who doesnt get it? Where do these folks live, that they think insurance salesmen are on every corner with a deal for ya? Go to ANY insurance agent and say "I have MS, can I have some insurance please?" and you will be hucked out on your pretty lil fanny. Best hope is finding a job that has some benefits, but you have to be well enough to attend every day for 90 days in order to qualify, and then if you lose your job, can maintain the COBRA benefits. Go to the State Aid folks and they will tell you to sell your car, cant own a home/condo and if you have more than $30 in your bank account, you need to drain it first. THEN they will allow you to fill out paperwork for help.

Sometimes going to your local town hall can net some benefits. They usually know of programs that are good for temporary help. Local Churches, and or temples can also help. Even if they can help you pay for 1/2 the medicine needed to get you through the flair/relapse it is a blessing. Churches know of so many doors that can be opened. Most Baptist style places are pretty good at it. Want to borrow my door knocking gloves?

I hope you feel better.
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Old 09-01-2009, 09:33 AM #4
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My Neuro won't prescribe LDN as it has no trials performed in USA and side effect may be Euphoria. 4-AP (also used as bird poison and known also as Fampridine - helps some but not me) (Possible side effects of seizure) Well, that has trials in good old USA, so he prescribed for me. Made me tired, disconnected, nauseous, did no positives but never Euphoric thank Goodness (???). He has not (doubt will ever) responded to my e-mail where I said this. Guess I'm off his patient list now. I have health insurance but am PPMS. DH agreed with me when I said I'm done with MRIs and neuros. He says they just say I'm PP, nothing will help, see you in 6 months. Oh no you won't!! I can get LDN without these guys and will. I'll try stuff but refuse to just tread water without trying. You're not letting me try, I want to scream. We don't live in the same world, my last neuro had to google stuff I talked about, maybe having MS and being here has educated me past neuro. If Stem cells prove their worth, etc., of course I'll return to a neuro, but right now I'm done. PP means no steroids for me, just Amantadine and Vesicare. I'm already alone anyway. Rant!!!!
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Old 09-01-2009, 09:40 AM #5
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I understand where your neuro is coming from but it's so easy for him to sit there and say those things. He already has health insurance probably through his office and doesn't see the struggle many of us face every day. I think doctors need to look at things from our point of view and have more understanding and maybe some solutions to the problem (lack of insurance). If they don't specifically have the answers, then tell you where you can get them. I'm pretty sure you already know the importance of health insurance and medications that help MS but to get a lecture from your neuro does nothing but upset and depress you. It's not very helpful. (((hugs)))
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Old 09-01-2009, 10:26 AM #6
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I think the correct response when your doctor tells you that you should have health insurance is "well, DUH!"
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Old 09-01-2009, 11:47 AM #7
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Aw Char... I'm sorry you're feeling yucky. I hope the prednisone helps.

I agree about the insurance suggestion. It doesn't sound like the doctor is in touch with reality. Maybe he is offering you a job with benefits? Or knows of some out there that are readily available? They are few and far between, doesn't he know that?
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Old 09-01-2009, 12:23 PM #8
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((((((Char))))))) ...I second, third and fourth Kelly's LDN suggestion.
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Old 09-01-2009, 12:30 PM #9
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Don't all of the A, B, C, R drugs have charity programs for people with no health insurance? You should look into that. Better yet, he should have given you info on these programs. I know that I have read on here and other MS boards where people are on these programs.
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Old 09-01-2009, 12:59 PM #10
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Quote:
Originally Posted by kicker View Post
My Neuro won't prescribe LDN as it has no trials performed in USA and side effect may be Euphoria. 4-AP (also used as bird poison and known also as Fampridine - helps some but not me) (Possible side effects of seizure) Well, that has trials in good old USA, so he prescribed for me. Made me tired, disconnected, nauseous, did no positives but never Euphoric thank Goodness (???).
Figures......he'd prescribe the bird poison but not the LDN!! I've never experienced what he calls "euphoria". Although, if feeling close to normal again, having a little energy and not having the searing leg spasms qualifies as euphoria then, yeah, I've experienced it!

There's no $$ in LDN for anyone. The only ones who benefit are people like me.....and SallyC......and anyone else who's tried LDN and found blessed relief from it. I don't "feel like" I'm taking anything. I get no side effects like nausea, chills, fever, site reactions, etc. from it. And best of all it's not a shot!!

I'll never understand why all the doctors think we have to take potentially harmful drugs and suffer all the side effects when LDN is so easy. It's almost like they think we can't have a good thing without something bad added to the mix.

I'm just waiting for the day some Neurologist "discovers" LDN and acts like he's hit the bowl of gold at the end of the rainbow.

Sorry.....didn't mean to go off on a tangent here.....I've just found such a great thing and I wish everyone could give it a try.
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