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)

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! :rolleyes:

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. :)

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?

:hug: I hope you feel better.

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!!!!

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)))

I think the correct response when your doctor tells you that you should have health insurance is "well, DUH!"

Aw Char... :hug: :hug: 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? :confused:

((((((Char))))))) ...I second, third and fourth Kelly's LDN suggestion.

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.

Figures......he'd prescribe the bird poison but not the LDN!! :rolleyes: 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! :cool:

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. :rolleyes:

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

other options
 

yeahbut,
I'm sorry to hear that you're having to experience this. There is a political undertone to this that bugs me. I'll leave it at that.

I know a good bit about the CRAB's, nothing about LDN. LDN might be the way to go, sounds inexpensive and I know a lot of folks swear by it. You might want to consider antibiotics. I don't think it's as inexpensive as LDN, but two of the three parts are available as generics and it's not nearly as expensive as health insurance.
Ken

Antibiotics can cause constipation. Make sure they're right for you. For me, a short course causes problems I must deal with.

You know, nurse who introduced antibiotic therapy has died. Research anything before you try.

Hi Kicker,
I've never heard of a case like that. Is there info posted about it? I'd be interested in reading it. I don't know that abx therapy was started by a nurse.
Ken

Or maybe it's AD therapy. But antibiotics do screw up my good bowel bacteria and constipate me but I do tend towards that. When kids were small with ear infections, their doc would prescribe a something pills to promote growth of "good" bowel bacteria. Think nurse was AD therapy. If I don't do it, loose info in my head. I just finished antibiotics for a UTI and am eating Activia right now (yogurt can help bacteria grow.(good)

You may be thinking of Prokarin(SP), Kicker. That's a histamine therapy, started by a nurse. Some found it helpful, most didn't and it wasn't covered by insurance.

So maybe that incident this past week wasn't carsick after all, huh? :cool:

Pick a therapy. Get the prescription from the neuro. I have a bunch of info on the programs that may help if you apply. The drug may be free or reduced greatly in price. Apply for assistance from the state too.
I get out tomorrow a.m. and I'm off until the 12th. I"ll get all the info together and email you the whole package.

Let's get this show on the road!

We like our little bubbling Yabbit and we want her to keep bubbling for as long as she can!!!

:hug::hug::hug::hug:

Yes indeed! And RW, you are a sweetie pie for helping our widdle lambchop!

Kicker, I have a pretty decent, though not perfectly complete history of abx therapy, but I can follow up with others I know to get closer to answers for you if you would like me to follow up. I'm all for helping provide information.

I think it took a while for Kim to adjust to the protocol, but she's handling it fine. She does take a fair amount of charcoal to help with secondary porphyria. She also takes probiotics every night at least 2 hours apart from her evening rifampin.

But, back to the original thought ... when we were having trouble getting the scripts I looked for ways to get the abx mail order and it worked out that a month of abx would cost about $200-$300 a month, sans insurance. Ken

Aw Yabbit..I'm so sorry you're feeling like poo. When my neuro wanted to put me on Tysabri, there was no way I could afford it, even with insurance. I made the rounds with the drug company, and they agreed to give it to me free. As for the infusion costs, most hospitals have programs for those of us who couldn't afford that, too.
Whatever you decide, I sure hope you're feeling better soon!:hug:

I don't know if you are on Medicare but my Biogen nurse that calls me every 6 months to see how I'm doing told me that Medicare will pay for my Avonex if I have my show at my Doctors office. Basically the doctors office purchases it and then gives me the shot.

Good luck lil Yabbit. I hope you are able to get some health insurance.

Feel better, friend. :hug:

Oooh, this sounds like a box of frogs. I'm so glad I'm not in the U.S.
Having moved from the UK and its NHS which I was confident would take care of me for ever, my Dx in Oz struck the fear of wotsit into me.
Luckily, even without private health insurance, things aren't too bad. my neuro works out a bit costly but my GP is free and my Beta is $30 a month.
Could be worse. :rolleyes:

I hope you get the help you need. I can't imagine being in your position. need the treatment but can't get your hands on it... :(

(((YB))) - I do hope you start feeling better soon. :hug:

As for the meds, do you qualify for this program as well as others in your state? http://www.maine.gov/dhhs/oes/hiap/del_exp.htm I know each state has different requirements.

(((Char)))

char,

what a pickle to be in. the previous advice is all good.
i hope you can hook up with a tx. best to nip this in the bud if you can.

thanks for the tip Trish, I am not considered disabled so I don't think I qualify but I will check into it.

Give it a try. You may qualify for other programs in your state.

Additionally, many of the DMD companies offer assistance. You can also see what studies are being done in your area. Some pay for the meds. You also get excellent care. While I was part of a study, they did not cover the Copaxone but did provide the oral steroids. Also, I got great care during that time.

You can also talk to your dr about your situation and see if he would prescribe the LDN for now until you get insurance. Provide as much documentation as you can for him to review and discuss with you. He may be in agreement with it based on your situation.

In the meantime, know that I am keeping you in my prayers.:hug::hug:

I'm sorry Char :hug:. I might have missed a post suggesting this but have you tried contacting the NMSS? I've connected with a wonderful girl at my local chapter who has been helpful to me in more situations than I can count.

Try to speak with the program director at your local chapter. I really hope they can help you out.

Hugsssssssssssssssss

How's it going, Charbaby?? :hug:

Just seeing this now, but you know how sorry I am to hear that you are feeling yucko Char. I have been battling the nasty vertigo for a while now and it's really a downer. The Phys Therapist and Dr are working together on my middle/ear etc to see if they can help alleviate it w/o going on oral roids or injections.

I feel bad for you in regards to the insurance situation and I'm really of no help in that area, but just wanted to chime in and say I understand how you feel from the physical aspect of it.
Take care my Mainah friend.

P.S. That RW is a keeper as far as buds go. Your'e an amazing person RW!

I am feeling much better, Thanks Sally for asking!! :hug: