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/

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.[/QUOTE]

Do you know him personally?

alice

Do you know him personally?

alice[/QUOTE]

I know Dr. Benatar (he's my neurologist) and I agree completely with Christy - he's an excellent MG doctor.

I know Dr. Benatar (he's my neurologist) and I agree completely with Christy - he's an excellent MG doctor.[/QUOTE]

I hope you don't mind me asking, but what makes him an excellent MG doctor?

alice

I saw Dr Sheean yesterday and it was absolutely fabulous--WAY better than I could have ever hoped. He was tested so many more muscles groups (fingers, legs, arms, back, stomach, neck, eyes, etc) than any other doctor and in different ways too. He was genuine and thorough. Even though I felt very strong compared to how I have been, there were muscles that were very weak he was saying and the testing caused me to be short of breath at times.

He said that there were specific tests that an MG specialist looks at that other doctors may be unaware of, certain muscle groups. He said it is "very very likely that you have myasthenia gravis." When I asked what else it could possibly be, he said "That's just the thing. It couldn't BE anything else." He went onto say it's only that there is no objective test yet because of the seronegative issue. He has several people in my situation. I just have the positvie icepack test, strong response to mestinon, most giant list of symptoms possible, and huge positive response to IVIG.

He is going to do a CT of my chest because he said the CTA chest is insuffient since they weren't visualizing the proper area. He is ordering breathing test sitting and lying down to check the diaphragm. I have an SFEMG scheduled for next Wed. He wants to do 5 more days of IVIG starting a week from Monday because I am too weak compared to normal and because he wants to get me off prednisone to get me in shape for a thymectomy!!!!!!!!!

And he said he would be my new doctor!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!:: D

So I as diagnosed as I can be--finally. Boo and yay? And the SFEMG is really just for the insurance people. . .

debra

Debra, That is fantastic news! Finally. A diagnosis and a good doctor. It sure sounds like this guy is a keeper. What a relief, eh? Well, sort of. ;)

Annie

Ditto to Annie's comment. Sorry you've got MG - - but really glad you have the dx!!!

I'm so glad that you got a diagnosis - now you can move on from here. No, it's not great to have MG, but at least now you know what you are dealing with. Now, your other doctors will know that you have this and that will be a VERY valuable information point from which to work in the future. Plus, your doctor will know which medications to avoid when treating other symptoms - that could literally mean the difference between life and death!

I don't think that some people realize how very important a positive diagnosis can be, but for us it means that our doctors aren't chasing symptoms trying to figure out what is wrong (or thinking that it's all in our heads). I got a "fluke" early diagnosis, but I realized that some of the mild things that I had been experiencing for the past couple of years had probably been early indications of MG. It's such a relief to know that there was a REASON that I was being so lazy!

Just had my first SFEMG and I cannot believe it was normal. He tested 5 different muscles!! But considering I just had 5 days of IVIG, am on 50 mg of prednisone and I could only hold the mestinon for 12 hours, I suppose I shouldn't be surprised. So now I'm seronegative and have no objective tests besides the icepack test and response to IVIG still. This is so frustrating.

Tomorrow I am scheduled for breathing tests w/ and w/o mestinon to check diaphragm strength and I am praying that will prove something---anything at this point.

I was supposed to have a CT on Monday but they are going to either cancel the contrast or do an MRI for the thymus instead. Did you guys know the iodine is used in the contrast which is contraindicated in MG? He is not cancelling it because of that though but because I had hives for a week after my CTA chest and they think I may be allergic to iodine and the last thing I need is more drama. . .

My thymus better be huge or I am going to have to get a muscle biopsy next.

Hang in there with me all you seronegatives!! They are still totally certain I have MG. It's just SO difficult to get to. . .ugh!!!!

The only good news is that they just revoked my Meniere's Disease status based on the MG diagnosis. The hearing loss, balance issues, etc are due to MG they are saying. . . .

debra

Debra,

I am so sorry you are going through all this. Yes, 'tis true they have to be really careful with contrast and MG. When I had my CT scan they used the 'light' iodine (they said it was used for patients who might have an allergic reaction). It worked fine and proved my thymus was ok.

Anyway, I know what you're saying - I'm seroneg and 'barely passed' my SFEMG. Luckily, my neuro put me on Mestinon anyway - - and so far that is the only med I have needed.

Hang in there - at least your neuro is still engaged and still working to get a dx! That's a very good thing!!

Sue

I hope you get some news soon! When you mentioned that about iodine, it got me thinking. I have a form of Celiac Disease called Dermatitis Herpetiformis - it's a dermatological manifestation of CD, and iodine will trigger a rash in some people with DH.

Your symptoms certainly sound like MG, but if you have one auto-immune disease, you are more likely to have another one. You may want to ask your doctor to test you for Celiac Disease while he/she is running other tests. Be aware, though, that about 10% of people with DH will NOT test positive on bloodwork for CD (I'm one of them) - they still have it, but the antibodies are expressed on their skin and not in their blood.

Many people on this forum have benefitted from a gluten-free diet - it won't cure MG, but it does seem to lessen some of the symptoms. A lifelong GF diet is currently the only known "cure" for Celiac Disease/Dermatitis Herpetiformis. People with DH are advised to limit their iodine intake - that can be done fairly easily by using uniodized salt at home when cooking.

Here's a link to more information:

http://neurotalk.psychcentral.com/post8767-2.html

Hope this helps! :hug:

Seroneg too
 

Hey debra, I am interested in what they found out in your breathing tests for the MG. I did the same tests tho sadly I had to ask for them. It went great but the results werent taken as seriuosly as hoped as the the test they do to test the diaphragm was in their words questionable because I couldnt hold the pucker as I was supposed to. Well of course I couldnt as my mouth muslces are so weak just as others are when I am off the mestinon. So the amazing results I felt meaning my diaphgram actually moved at all were not counted. I went from about -50 without the mestinon to -90to-95 with it!!

Annie59

Hi Annie,

The breathing tests showed a mild abnormal lung function that was improved by 20% with mestinon and became in normal range. It was not repeatable though since I felt terrible and since we have a neuromuscular disorder, they said this happens all the time. . .they can't really say the test is valid since it's for COPD etc. We get too weak and cannot continue with testing.

Also, my results would have been amazing but we missed my peak window. They tested me at 45 minutes after dosing and it turns out my peak its at 90 minutes. I know this because I was having trouble breathing with 28 respirations/minute that dropped to 12/min by 90 minutes on mestinon. I really wonder what my results could have been!!

Your results sound impressive. . . .debra

oops, it was a lung ratio that showed a mild abnormality and the diaphragm function was abnormal and was improved by 20% with mestinon...

to give you an idea, the AWP, the average wholesale price, is the price right now that(or was for years and years until now) that all companies get paid for a drug. Pharmacies, hospitals, who ever bills it to insurance companies, use the AWP. A 200ml(the big bottle) of Gamunex, AWP is $1944.00
Im a big boy, so I get 650 ml daily for 3 days. Thats around 7000 dollars worth of just gamunex daily. Now add in all the tubing, syringes, home nursing, secondary drugs like heparin, salines, its up near the 9000 dollar mark daily for my treatment.
AS compared to people who just take prednisone, which costs around 2 cents per tablet.
Generic mestinon is relatively inexpensive also.

Hi Artchick, I am not sure you had same tests as I. This what I had that was most revealing, a Negative Inspiratory force test or NIF. They have a low tech version done at bedside but in fully loaded hosptial pulmononary labs they have the chair in the bubble you sit in and they hook you up to tubes and a mouth piece that is atached to a computer and it is all very fine tuned.

And this is for measuring diaphragm and muscle strength for breathing and not just for COPD so is accurate for what we have. In January:
first one was Peak NIF of -36 cm of water (before appointment)
second was Peak NIF of -50 cm of water (after appointment and eating)
after mestion Peak NIF of -91 cm of water !!!! and wow did I feel the difference here. I felt my diaphragm move! Normally I feel nothing there.

Tests also done were FVC or forced vital capacity which increased 10% after the mestinon. Diffusion capacity was at 68% of predicted prior to mestinon. My lung volumes showed total lung capacity of 86% of predicted.

Now my lung doc is the director of this lab as well as one of the senior doc at the teaching hospital I go to. But I have had these tests thru earlier lung docs so I know that you all can get them too.

Brain has gone blank....so I gotta sign off. Hope this helps someone in some way.

Annie59

:D:thud:I am so glad I have found you guys! I too got a sero-negative result and when neuro did CT scan of thymus I felt the same way - It had better come back REALLY BIG cuz I am sooo very tired of the constant wondering. Bless my neuro as he finally put me on mestinon ( due to confirmed MG Occular) and the results were amazing! After two years of knowing me as the lump of worm incapable of moving-I strutted into his office the other day in High Heels! I could talk, walk, laugh, smile and converse as an intelligent human being. After our session, he turned and said, Truly Amazing results! I smiled and gave him the thumbs up and then a big hug with "thanks for giving me back my life!" It was a great moment.

?
 

Annie, do you know about prednisonse longterm? Ive been on it for 2 years from actually a NEGATIVE spinal reaction to IVIG and now have systemic tendonitis and am wondering if its from vitamin deficiency from the steroids.
Any help woudl be appretiated.:confused: