Going to Mayo

[Sunshine]

The trip to Mayo was exhausting and expensive and the eval will finish in June. I am underwhelmed so far.

The neuro did some painful electric tests, and an expensive useless consult with a paraprofessional that Medicare won’t cover,

The hard EMG is in two months. I have to be off muscle relaxants for it. I will talk to local neuro as I am not sure I should do that. The Mayo doc said if I go into withdrawal, by all means take the Baclofen. i.e, racing heart, profuse sweating, etc. GEESH. He said if I spasm. Just put up with it. Now these are not ordinary spasms. Way worse than childbirth

. Started off with exam, no history. Later in day was to take a history but said he didn’t need it as it was in my chart from the 2004 eval and my current local neuro notes. History is so important and one can learn a lot from it by asking your own questions IMO.

Online I see that the Mayo GAD65 is also abnormally high. Will be interesting to see his comment on it.

They have you sign at most appts that you will pay if Medicare doesn’t, and that Medicare might not pay.but no one can tell you anything more other than the price if they don’t. If they don’t, I am already going to be dinged for 3K.

I have another call into billing. No one seems to be able to give me a procedure code for it to check with Medicare.

I am waiting for the Mayo to say, “it’s just stress”?

[agate]

Mayo might very well find that you're all stressed out after going through all of the rigamarole about billing and what Medicare might or might not cover.

You have access to the Mayo doc, right? Or to someone in his/her office? I hope you're explaining to them how difficult it will be for you to go off your meds just for the EMG test. I think I'd want to know just what they're hoping to find out by doing that test and how necessary it is. Maybe it's one of those routine tests that they'll agree you can skip if it's going to cause you problems like extremely painful spasms. Or you could just opt to skip the test?

I'm concerned when a doctor seems to have paid no attention to my history but that seems to be the way things are being done, increasingly. I realize that doctors are very pressed for time but I'd feel better about any care I was getting if I knew that the doctor at least referred to my file to find out a few things about the kinds of problems I've had in the past and what was done about them.

[Sunshine]

He read my file later in day. But asked me minimal about history and nada about symptoms.

He said The EMG is a necessary test. If it has to be that way, he said he could do it on my muscle relaxer‘s but that it might mask the findings. He would rather see me spasm horribly in pain and do it on no muscle relaxants,He did say, however, that if I went into withdrawal from back often that I should take it immediately. GEez.

[stillstANNding]

I was hoping for so much more and better, Sunshine. Sorry. Rest up. Maybe local is better in your case.

ANN

[Lazarus]

I was hoping for so much more and better, Sunshine. Sorry. Rest up. Maybe local is better in your case.

ANN

I have consulted with 3 outside Doctors about my situation. My wonderful neuro sent me to 2 of them and I went to consult with the head of neurology at a big hospital. Of the 3 I saw, two of them had not read the materials my neuro had sent. They were both scrambling to skim the material to find out why a I was even there. The third one was Timothy Vollmer who was spectacular and consulted closely on my case.

My local neurologist was the best one I could have had. However he was on the faculty at Tufts and was a researcher too. But he practiced here in Springfield MA. So, you are in a situation when you are damned if you do and damned if you don’t. I think I would always opt to get second opinions. But I am so sorry it was so hard for you.

[Pegakafarmgirl]

Linda,, that's my thought too,,{damned if you do etc },, Sunshine sorry your best laid plans took the high road,, maybe things will turn yet,, hang in there

[Virginia]

I am sorry you are so dissatisfied with the results of this visit. I have had two EMGs and did not find them to be bad at all. Maybe you will not have a problem with yours. I know we are different in our reactions to things, so you will just have to see.

I am disappointed for you. I know you had such high hopes for this visit.

[Earth Mother 2 Angels]

((((((Sunshine)))))) ~

I'm so sorry for the ordeal you've endured, and for, what sounds like less than compassionate treatment that you received.

In addition to pain "way worse than childbirth" (OMG!), what is the risk to you systemically going off of your meds for the EMG, and experiencing those withdrawal symptoms? It seems that a risk/benefit analysis would be helpful to you in determining the value of the test and what you'll experience.

Might there be a reasonable mitigating dose of your meds, like a reduced dosage for the test, that wouldn't affect the results adversely and would give you some relief during the test?

Was there any discussion about treatment options based upon the results of your testing? As in, "If we find X, we would take this path of treatment." "If we find Y, then this treatment. If we find, Z, then this treatment."

I don't think it's ever "too early" to discuss treatment options. We create scenarios, and we explore the treatment options for each one. While we're all different in how we respond to a condition/disease and treatment, there are certain protocols, which physicians will follow in treating every one of us. At least in my experiences, most physicians don't think outside the box as much as we'd all like them to do.

But, when going to Mayo Clinic, or Johns Hopkins, or the Cleveland Clinic, etc., we expect outside of the box thinking.

So, I hope that you did have that discussion. And, if you didn't, I hope you will.

I am sending you positive, healing energy, and prayers for strength, a reduction in your stress, an answer from Medicare in your favor, no pain or spasms, peaceful rest, and all of the sunshine you need to see the path ahead.

Love & Light,



Rose

[Sunshine]

Updated. The billing people called and said the procedures will be covered except the paraprofessional hour long consult. Which is about $500: good work if you can get it.

Mayo is a Provider on Medicare Part A, but not Part B. Thus, for the part B visits, Medicare sends me a check and then I pay Mayo.

But, since they aren’t Medicare provider, the amount Medicare allows is 35% less than the charges. Supplementary insurance will pick it up only if you bought Plan F. Luckily I have Plan F.

Let that be a warning to those who are in a similar boat.

[Sunshine]

The risk of going off the Meds is a medical crisis of tachycardia, hyper hydrosis, and, theoretically seizure. Not to mention body wide spasms.

I will ask local neuro about it. My pal at infusion center with SPS said he did his EMG on his muscle relaxants.

[SuzE-Q]

Yikes, talk about adding to your stress with this upcoming EMG! And how stressful not even to know what'll be covered until after the charge has already been incurred! *mad

Hope your doc can help assuage your concerns and maybe it'll be fine to take your meds after all.

[Sunshine]

Can you imagine going grocery shopping and there are no prices on the shelves at all? You go to check out, they ring it up and say that will be $1103. So you say, whoa, too expensive. Sorry they say, we already rang it up. You have to pay.

[Sunshine]

Finally, this past week, I got some answers from the billing department. Most of the charges will be covered, except a couple of hundred dollars. Fair enough.

But most of the June testing visits will not be covered....

[Catdancer]

I'm sorry you've had to go through all this. It's hard enough to cope with MS and other symptoms without also having to deal with the financial things.

[agate]

I wonder if there's a way to get some assistance for those expenses? After all you have two chronic disabling disorders. The Easter Seal Society--now apparently known as Easterseals--can often help in situations like yours, I think--might be worth inquiring, anyway:

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