6 more days in the hospital. . .treatment this time!!
 

I have been in the hospital for the past 6 days!! So So Scary!! Serious breathing problems, rapid shortness of breath and my MEP or MIP was down to 12. They said they expect that kind of nuber with someone who just came off of a ventilator. Under 20 is awful. They were very concerned. They had me on respiratory testing and neuro checks every 4 hours throughout the night to hopefully keep me from being intubated. I choked 15-20 times in one meal before I went in. I had a special swallow eval and thankfully everything was going down the correct tube still. I was unable to walk unassisted again as I was headed to the ER.

Thankfully the same neurologist that I had in the hospital last time was on and had the courage to treat me. Of course the treatment could have killed me he said since there can be kidney issues and stroke issues but we were totally between a rock and a hard place with extreme bulbar symptoms he was saying but sometimes you have to make those kind of decisions. 5 days of IVIG and 60 mg of prednisone/day. 75 mg mestinon and I am SO MUCH BETTER!!!!! No choking, waking normally, no shortness of breath, good stamina (better than the last 2 months).

Of course I am still unconfirmed MG but he said he cannot imagine what else it is but I am still needing to go to more specialists to get the firm diagnosis if for no other reason than he said that it cost $10,000 for this 5 day treatment and without full proof the ins. co may deny after a while so. . .

I really hope this holds me for a while. I feel like a new person : )

I see an MG specialist on Thursday!!

debra

Debra,

Your experience does sound scary - - I'm glad you're doing ok now!!

The only thing I don't understand is what will it take to ' confirm ' the MG diagnosis?

and who needs this confirmation?

How could an insurance company ever deny a doctor's treatment because the doctor refuses to give a name to the malady they treated, but the doctor noted that immediate and agressive treatment was necessary for the patient? (Rhetorical question - I get how some insurance companies operate - I just can't believe the can get away with it!!)

Sue

-12? Geez, Debra, that's insane. The "gold standard" is to do Bi-Pap or intubate at -21. I've been down to -17 and it is not a good feeling. I'm so sorry you were back in that scary place again.

I cannot imagine it is not MG either. I'm so glad you got the care you needed. And I'm glad you are better. Don't let that make you feel like superwoman or anything! ;) You still need to take it easy.

Ditto on Sue's sarcasm. Insurance companies care about money. They do, however, cave in with evidence, phone calls and a doctor's paperwork.

Docs use plasmapheresis when other tests are negative but I don't know why IVIG couldn't be a diagnostic tool too. I hope they will declare that you have MG.

Has anyone talked about vit. D, calcium, flax or fish oil, B12, etc. because of the Pred? You have to supplement while on it long-term.

Take it easy. I hope you will not end up back there again!

:hug:
Annie

Oh, if there is a next time . . . dial 911, okay?

Debra,

Wow, I'm going to start getting nervous when you don't post for a few days! Hooray for finally getting some treatment. Not that I know much about it, but the fact that the IVIG works--it binds antibodies!--seems to indicate that it's an antibody problem.

My neuro at one point suggested that we might try IVIG diagnostically for that very reason.

At least you know there's something that can be done if you get worse again. I'm glad you're OK.

Abby

Debra,
I'm so glad that you received treatment and are feeling better. I'm like everyone else. If the treatment that they give you, improves your symptoms, especially to the degree that you describe, then I don't know what the heck it will take for them to give you a diagnosis of MG.

Oh well, at least you have strong evidence in your favor of how much your symptoms improve when you are given treatments for MG. No doctor can deny the information is written in your medical records.

I pray that you continue to do well until they can finally give you the diagnosis that you are so desperately seeking.

Gentle Hugs, :hug:
Shari

insurance companies and diagnostic criteria.
 

you have to understand that insurance companied work, according to the diagnostic criteria and guidelines given to them by the pysicians taking care of this illness. They will not go against the state of the art in that field, but can take advantage of "gray" areas.

I am sure that no insurance company will deny treatment of acute myocardial infraction, because the EKG was normal. And no insurance company will deny treatment for leukemia because the blood count was normal.

If the diagnosis of myocardial infraction was defined by cardiologists according to the EKG, or if the diagnosis of leukmia was defined by hematologists as an abnormal blood count, then the insurance companies would have not accepted those diagnoses without "firm" evidence.

If the diagnosis of myasthenia is defined by neurologists, as an abnormal SFEMG, and we read in every text book or review, that a SFEMG done in a weak muscle rules out MG, then why are you blaming the insurance companies for requesting this?

I have recently come across a relatively "open minded" booklet on MG, where it said that the diagnosis of MG is based on 2/3 of the following-

1. response to acetyl-choline esterase inhibitors.
2. diagnostic EMG studies.
3. antibodies to acetyl-choline R or MuSK. but, a strong arguement could be made that a rapid positive response to PLEX or IVIG is enough support for the diagnosis. (only under extreme situations should those be used for diagnostic purposes).

I believe that the person that gave me this booklet got it from the MGFA, so it is accepted as a serious and reliable source.

interestingly in the "further reading" section of this book there is a recomendation for a paper by Michael Ben-Atar, who is the only neurologist that looked at the diagnostic tests (including SFEMG) and assesed their real diagnostic value. (which is not anywhere near what it is claimed to be).

This is a huge step forward (even though it still does not cover all the patients).

Let's hope that in the near future, it will become more widely accepted.

alice

re; Dr. Benatar....
 

interestingly in the "further reading" section of this book there is a recomendation for a paper by Michael Ben-Atar, who is the only neurologist that looked at the diagnostic tests (including SFEMG) and assesed their real diagnostic value. (which is not anywhere near what it is claimed to be).

alice[/QUOTE]



Michael Benatar MBChB, MS, DPhil
Associate Professor of Neurology
Associate Professor of Epidemiology
Director, Emory Electromyography Laboratory
Co-Director, Emory Muscular Dystrophy Association Clinic
michael.benatar@emory.edu


Excellent USA southeast MG Doctor.

I suppose the whole diagnosis issue will all depend on how the doctor writes it up in the notes too, right? I mean he did say he cannot imagine what else it could be and he had to justify treatment to the ins co. . .

Doc said I should be good for at least 2 weeks from the IVIG. In the papers he gave me it said it could last up to 6 wks but I guess I have it pretty bad so he must not be holding onto that much hope that I'll be riding this out a long while but we'll see. He and my neuro just really want to see what the MG specialist comes up with. The MG specialist is the doctor that was involved with the awesome stem cell transplant of the MG patient in 2007. Very exciting :)

My breathing was at -12, yes, but I also got a -18 so maybe that and the VC #'s saved me from intubation? My respirations were 30 +/minute. But the strange thing was that this time I could still take a deep breath which was different than the last time so at first I was just trying to slow down my respirations (which didn't really end up working) and I couldn't figure out if I was in trouble.

The staff at the hospital was sooo much better this time with me and they gave me oxygen and they weren't just asking if I needed something for anxiety like last time (which was ridiculous). They treated me like I actually had an illness and that I wasn't possibly sick or possibly a head case and no one was quite sure.

I would love to get my hands on that booklet you mentioned Alice. That may come in handy down the line. . .or is there a link somewhere?

Thanks everyone for the hugs and support. I am so happy to have you all:hug:

debra

Glad you are OK - sounds like you had a heck of a week! I am still kind of new to all of this MG stuff, but my understanding is that some of the ONLY people who respond to Mestinon are those with MG. That's actually how I GOT my diagnosis - most of my tests came back negative, but I was able to take 90mg of Mestinon with no problem.

Does the neurologist who treated you at the ER have a private practice, or can he/she recommend one in your area who would be willing to look at your ER/hospital experience and just make an MG diagnosis?

I understand where insurance companies are coming from, in that they can't justify expensive treatments for patients without knowing for sure if they have a certain condition (and MG is a lifelong commitment for an insurance company). However, I have a feeling that given your recent experience, an insurance company wouldn't deny your treatment.

They may kick it back, just because they have certain procedures in place, but most of them are fairly reasonable in the end. I'm sure the ER/hospital physician will be willing to work with you if necessary. But in the long run, it's going to be cheaper for an insurance company to make sure that you are on "preventative" treatment (to avoid too many costly hospitalizations), so it will be in their best interest for you to be correctly diagnosed!

In the meantime, you take it easy, OK? You're in our thoughts and prayers -

Is the neurologist you are talking about Dr. Drachman?

this is the website of this booklet-

http://www.myastheniagravisbooklet.com/