My new MS Specialist

[LisaJF]

I'm going to see a new MS Specialist on September 7th at 12:30 pm. I'm having a little bit of reservations in going during a time where I'm not doing my "thing" that seems to come once a month or every two months.  I have to pay out of pocket to see her ($500.00) and I would hate to go when I'm "almost" at baseline and then she'll want to see me when I'm going through it (which would be another 500.00).  That's more than I can afford.


Any suggestions?

Lisa

[grannyhotwheels]

I was approved for disability 2 years before my diagnosis... My neuro was a lot like yours in that he wasn't going to help me get it but my PCP did help... He saw me at my best and worst because I went to him for pretty much everything... He is the one that helped me get it...

Of course Disability also sent me to several of their doctors and I didn't hold anything back... Never say note to self... Say it out loud so that doctor can put it in your chart... In the long run it will help... Hopefully you have a good relationship with your PCP and you could talk to him about it...

I'm not sure about your state but in Oklahoma they will change your medicaid from lets say mdwise to standard if that's what the doctor has a contract with... Definitely check into that cause it could save you thousands in the long run...

I wish you the best and please let us know...

I'll be praying,
Carol

[tammy197238]

Well I work at an ob/gyn office and if your states medicaid is anything like Indiana medicaid it works like this.  Theres anthem, mhs, mdwise and standard (straight).  You have to chose one that your primary care provider has a contract with.  Some offices have contracts with all of them.  Your primary care provider sees you for everything...but he can refer you out to a specialist if needed.   We can get authorization from medicaid at our office to refer a patient to a specialist.   Try calling medicaid and seeeing what the "rules" are.   Ask if you can switch your plan to standard if that is what the neuro takes.  Here in indiana most offices accept standard medicaid.  Hope you can get things sorted out.  

[LisaJF]

I have medicaid....The type of carrier I chose is not accepted by that particular doctor for some reason.  Although the receptionist stated that they do accept "straight" medicaid. Like I know the difference? :/

There's no way I could work right now.  I'd be constantly calling in or be in the hospital for something or other or at the Doctor's office.  They'd fire me within 3 weeks.  Although money is going to end soon on unempl and I'm going to be stuck.


@ Kelly:  I truly feel that this is a no brainer for a diagnosis but then again, I rather have the correct one and not a diagnosis that is not there.  

It's the cycle, the time spaced apart, the cluster of neurological symptoms that come and go a month, two or three apart.  That each time I go through these clusters, that my symptoms are worse and I obtain a new one (like vertigo and the bronchospasm).  

Something is amiss and here I am back to normal practically (fatigued today, weak and short of breath and moody) but my gait is better, and no myoclonic jerks or chorea type movements.  So I take that as Im at baseline "sorta".

Now my MS Specialist will see me again during my normal time which he did once before and said, "I dont see why you cant return to work.  You should do so".  But when I left the office, I said to self, "But what about the extreme fatigue and the barely can stand up and hold my weight" type thing.....

Yet, again he will see me when I'm at my worst and grab another movement disorder specialist and say, "I dont know what you have"

Lisa

[tammy197238]

If your income is low you could possibly be eligible for medicaid??  Alot of doctors will offer a discount for self pay patients if you ask.  I have insurance but 2500 deductible and 4000 out of pocket which I have almost met for the year! UGGGGHHH  
But if you can pay in full alot of places will give you 20% discount.  I had MRI done at local hospital and got 10% off for paying in full and then xray guided lumbar puncture at a different hospital and got 20% off.  I've probably saved 400 to $500 by asking for discount if paying in full.  Although I must say the neurologist didn't offer any discounts so he's only getting 25.00 a month!  
Even if you dont have a diagnosis it seems that you would have a hard time working.  Can you apply for disability?  So sorry you are going through this.  I hope you find an answer soon!

[LisaJF]

Aww thanks you guys/girls!  What a thoughtful gesture!

Even if they accepted payments, I would still be paying for services I can't afford now or even later (and I'm sure it would be up to 1500.00 or more considering it would take multiple visits).  Reality can bite you in the @$$ for sure when it comes down to money and that is something I don't have.

Therefore, I'm going to have to stick with who I have until I find another alternative that will accept my type of insurance.  I would hate to have this MS Specialist that I have now to say a year from now, "Gee I dont know what's wrong with you.  Your lesions don't explain the symptoms you're having".  That's a year wasted and most likely, many more to come.

So back to square one and continue on with him. I figure it is best to have things documented as I see him, "Lisa is doing well today" then to "Lisa presents severe ataxia, abnormal gait, Hyper DTRs, etc."  At least he's good for something.  That way when I do find someone who is right for me, his notes will be useful to me.

Thanks for your kind words and support.

Lisa

[Sidesteps]

I'm sooo sorry Lisa, I wish I could help.

I am crossing my fingers they will accept payments.

(hugs)

[RazCarver]

geez Lisa, that's a lot of money and I sure couldn't do it either. I also have a bunch of bills that even if I was working I'd be paying on them for 10 years or better.  I understand the frustration.

Its been my experiance, no one has answers. My neuro changes his thoughts after MRI's vs exams and symptoms. and no matter what they always want you to come back. Friends tell me I need to go forward with getting a diagnois and file for disability. they just don't understand. they see the big change in the past year but they don't understand the rest.

here we have a clinic that is free if you aren't working and/or very low income but only open enrollment once a year. there is a homeless clinic so maybe next month i can get in there. somehow I doubt there are any neuro that donate their time.

right now I treat the symptoms because my neuro was nice enough to give me a 3 month script in one, before I got laid off. somehow I keep thinking there has to be a way around this maze. I just haven't found it.

hopeing you find answers
Raz

[drsdonthelp]

Hey Lisa,

I am with Lulu on this, with i wish I had a bottomless wallet to help you out too. I know how bad it stinks to try to get to the bottom of your health issues, yet, you have to go into debt to feel better.

Wish I could help you out, and by the way, glad you are safe from that wicked Beotch Irene!! lol

Always here for you, especially now that I am back from vacation, I will be on more again.
love ya,
Pam aka Flipper

[Lulu54]

Lisa,
I just wish I had some wise words or a bottomless wallet  to help you out here.  This is so incredibly frustrating to read and so illustrates what is wrong with our medical system.  I am so sorry you are faced with limited choices.  

Can I be Curly?

hugs,L

[LisaJF]

Hiya you three!  The three stooges!

Hahaha.

Well I had a phone call today, I wasn't around when they called to pick up the phone but I heard the message from the new MS Specialist's receptionist stating she wants to confirm the appointment and that the payment of 500.00 is in FULL at the time of appointment.  

This disheartened me because I can not pay that amount of money in full.  I will call tomorrow and see if there is a way I could pay in small increments, but I doubt it. I was under the delusional idea that this doctor would have a diagnosis for me after my visit (which I realize now that it would probably be impossible for her -- heck even my MS Specialist now doesnt know what I have and when I went to see my old Neurologist who knew me professionally (worked in the same hospital as I) seen me at my worst only said, "Possible MS, not probable, but possible".)  Why would I expect this woman to do differently?

In addition I would be accumulating bills I can't pay now and hardly afford later, especially realizing I would have to see her a few times.  

With this said, I suppose I will go to my appointment with my old MS Specialist, the one who has "no idea what is wrong with me" or "I can safely say its not MS based on the  Neuro-opth's and Urologist's report" or "The movement disorder specialist says that its not Huntingtons Chorea or Parkinsons disease which is a good thing" and go back to square one -- doing absolutely nothing but treating my symptoms as they come or when they come.

Ughs.  I'm totally frustrated.

Lisa

[sllowe]

Hey Lis,

I sure don't know. A good doc doesn't need you to be at your worse to dx.
If it's any consolation, I did go to JH for my 2nd opinion, after my nightmare began to subside. He still 2nd the MS dx - said 99% certain.

So fwiw girlfriend - you have all your records. MS can and does remit. Not failing all the tests at the time of physical should not be a deal breaker.

(((Hugs)))
shell

[anon07072023]

Too bad you can't just wait to schedule it until you're going through you're thing.  I can't believe you can get in to see a neuro so quickly there.  With you not being able to work right now, I'd hate to see you have to spend so much money on your medical care.  Is this the neuro that you said that you wanted to see at Sinai?  I hope she's a really good neuro.

I know that you definitely need to get in to see what the heck all of this is that's going on. I'm not sure what to tell you. Too bad she wouldn't do it for FREE!  Is that asking too much really?  :-)

Hugs,
Kelly

[Lulu54]

Oh my, $500 to see this doctor? That's crazy. I know mine says in the paperwork to bring $250 if there is no insurance.  I guess east coast prices are double that in the midwest.

good luck in deciding if it's worth it.
Lulu