[AnnieB3]

Anacrusis,

You mentioned in your other post that you had a Methacholine challenge to test for asthma or bronchial hypersensitivity. I have questions!

Did your reaction begin after the Methacholine was given or after the rescue inhaler was given (i.e., albuterol)? Did they give you only the Methacholine or did they follow with a bronchodiltor?

http://www.clevelandclinicmeded.com/...008/swartz.htm

Were you on Mestinon when you had the test? Why? Both Mestinon and Methacholine/Provocholine are "Cholinergics" or "Anticholinesterases." If you take both at once, you can have an exaggerated response.

Did you know that Mestinon, in some people, can actually bring on asthma?

http://quizlet.com/3047077/cholinerg...s-flash-cards/

I've had the test so I know what happens during it.

Did you have pulmonary function tests on the same day as this test? Did they do MIP and MEP during your PFT's? Do you have your test results?

So I'm wondering, if having a drug similar to Mestinon made you worse, do you have too much acetylcholine or not enough? Or did you take it while on Mestinon and have an overdose response? Do you get where I'm headed with this?

There are some CMS's that get better with Methacholine or worse with it, just like with MG.

http://neuromuscular.wustl.edu/mother/acetylcholine.htm

http://neuromuscular.wustl.edu/synmg.html

Cholinergic Drug (Makes MG better): Mestinon

Anticholinergic Drug (Makes MG worse): Atropine, etc.

This is a complicated topic because there are so many variables with drugs and with the different receptors in the body (muscarinic, nicotinic, ganglionic). But the simple nature of the question remains: Which drug made you worse? The Methacholine or the bronchodialtor (if you had it)?

I think it's a fairly huge clue for you and your doctors, so I wanted to start a new thread to discuss it. I hope this helps.


Annie


All things anticholinergic/cholinergic, in case you feel like doing a little reading.

http://www.fpnotebook.com/neuro/phar...lnrgcMdctn.htm

http://dig.pharm.uic.edu/faq/myasthenia.aspx

http://www.slideshare.net/pharmpcte/...linergic-drugs

http://www.slideshare.net/kaami16/ch...inal-chemistry

[Anacrusis]

Originally Posted by AnnieB3

.........

Thank you!

Iīm at work and just saw this and almost fell off my chair!

Can answer some right away.

No Mestinon. Metacholine was the last test. The muscles started trembling almost immediately after the first inhalation. The assistant kept touching my forehead (checking temperature) Gradually with more inhalations the muscles were shaking. She kept asking me if I wanted my coat and I kept saying no. After a while it got worse and she kept looking out the door to see if the doctor was done! I felt bad for her! She then tried to ask me lots of questions about my family and keep me talking. After a while I was asked to sit outside the room by myself. I did not panic. The doctor was ages before he came, and in that time the muscles started shaking more and more violently until my head started nodding. Itīs as though all the muscles were dancing uncontrollably and the bones just had to go along with them.

Once I got into the doctors I was just shivering and mentioned this. As he said nothing about it I assumed it was what happened to everyone after taking Metacholine and just a normal occurrence.

Then Ventolin which is the albuterol equivalent?? came before I went out into the corridor but did nothing to stop the shaking.

An hour later in the car my breathing was noticeably easier than ever but that is most likely from my elation to be back on that lovelyīhappy roadī again

The tests are in another language which you would understand! (Is there anything you canīt do??? )

About Mestinon, like with any drug (sedative, antibiotic) I only needed a small amount to notice an improvement/worsening of symptoms. So my max Mestinon was 30 mg but I noticed improvements even at 5mg. To see a worsening of symptoms with sedatives only 1.25 mg is needed - any smaller and that quarter pill becomes dust.

So that makes a contradiction then......worse with Metacholine but better with Mestinon.....

I will read the rest of your notes later on - thank you for your attention, Annie.

Now, if you are right about this then I can truly understand why it is important to see neuromuscular specialists since an asthma/COPD pulmonologist might miss important clues.

We donīt have any private ones here and I do like the way this pulmonologist has not yet made up his mind about things whereas the neuro had already decided even before I walked in the door


Anacrusis

[AnnieB3]

(Is there anything you canīt do??? )

Yeah, pretty much everything. I have MG.

I think you need to start a log of symptoms. If you had a drug "like" Mestinon, as Methacholine is, then I would have to wonder if you already had too much acetylcholine to begin with.

Mestinon IS a cholinergic drug. So is Methacholine. I'm no drug expert but Mrs. D. could give you an answer on that. Or you could read a Methacoline PDF. They work slightly differently.

CMS's are very common in Northern Europeans.

I'm not saying you don't have MG but your reaction to the Methacholine is very interesting, to say the least. It should've made a neuro's eyes pop out.

I can't believe they kept giving you more of the drug when you were having such a bad reaction. They should've MADE you stay there, monitored other things like O2, etc. and given you palliative care! That alone leaves them wide open for a lawsuit. Duh.

Well, read up and think and let me know what you come up with.


Annie

[Anacrusis]

Originally Posted by AnnieB3

Yeah, pretty much everything. I have MG.
Annie

I meant with your brain! But you knew that

Hey Annie,

I really canīt understand that CMS concept thing but came up with a few odd snippets of info that may mean something or may mean nothing!

In General:

It feels more like I am now healing from a very slow myasthenic virus that entered the muscles 5 years ago in the deltoids and spread to other MG related muscle sets, reached a worst peak in Spring 2011 and has now been leaving the body since one and a half years, some at very fast speed and some of it very gradually. Just to compound things, it was still spreading to new areas in the summer at the same time as it was all getting milder....

Have not felt the need for Mestinon for a couple of months now. I have been able to dodge the triggers that I know about and there appears to be a longer and longer space between symptoms....

My son continues to have intermittent ptosis and voice changes he is 6! He also has not been complaining of double vision since the very cold weather came.......

I did have a strong coffee just before the Metacholine test. On that sheet for Metacholine it says FEV 1 PEF and FEV%I could not be calculated.
I had no trouble breathing the gas but did have trouble taking a deep breath and blowin air in the other tube afterwards same time as muscle shaking.......

Always sleep on my side, have tried sleeping on back and wake up feeling like I stopped breathing for a while....

I can send you the complicated test results. But am a bit shy of posting all those numbers on the forum! My breathing is fine now and has been for a few months I think......

I believe the pulmonologist is someone I can work together with in the future in case it ends up being necessary. I know I could easily tell him about something written by you guys here and he would respond positively ... rather than defensively...


Thanks.....

Anacrusis

[AnnieB3]

Anacrusis, Compliments are hard for me to handle. I like to help people with medical problems - even though I'm not a doctor - because it's about the only thing I can do. I've lost so much due to MG that I need to feel kind of useful.

It's interesting that your symptoms get better in the months when an MGer would get worse. Think about it. Extremes of heat and cold increase Acetylcholinesterase (AChE), the enzyme whose job it is to mop up Acetylcholine (ACh) when it's done with its job of making your muscles strong.

If you have too much ACh to begin with, cold/hot weather and getting more of AChE will help you! Some of the CMS's do cause someone to get too much ACh.

And since your son has symptoms and CMS's tend to run in families, that's even more evidence that it could be a CMS. Has your son seen a neuro-ophthalmologist?

I think it's more important that you go over the numbers with the pulmonologist. Definitely never post your private records on the Internet.

What is your ancestry - I can't remember!

The sleeping issue might be a separate one or not. You could have sleep apnea or some other problem (cardiac). It's hard to say. Do you sleep more propped up? There's always the possibility of central sleep apnea too, where there is something wrong with the central nervous system/brain that causes apnea.

Whatever is going on, I'm glad you're finally getting some good help!

Annie

[Anacrusis]

Originally Posted by AnnieB3

I need to feel kind of useful.
Annie

Useful? What would we do without you?!!!!

Thank you! I am considering all your questions

The cold temperature has without a doubt helped me whether it is MG like or not it has helped my symptoms - especially vision. And with Mestinon the same - it helped my vision but also breathing problems when I had them. The cold could do nothing to help the breathing though....

Having said that temperature affects my symptoms it has only a small percentage of effect on the overall direction of what appears to now be receding myasthenic weakness (MG or no MG!) I hope I am not wrong anyway!



Yes my son did see an opthalmologist and yes they elicited his ptosis quite strongly but that is just another complicated story!!!

[AnnieB3]

I'm sorry that your young son already has a complicated medical story. That's beyond sad.

Do without me? I'm sure everyone would be just fine. I'm just more persistent and annoying.

I'm pretty sure I've mentioned this before but ruling out pulmonary hypertension would be a smart thing to do (via an echocardiogram). Ask the pulmonologist if they think that's even a possibility. Given your airplane experiences, there might be something else affecting your breathing. Just a thought.

Okay, think away.

[Anacrusis]

Today the pulmonologist told me that it wasnīt the metacholine that I reacted to but the albuterol, which I guess would have made more sense in an almost myasthenia free person!

The 3 incidences with similar breathing symptoms onboard an aircraft and the 10 occasions with same delayed breathing symptoms after sedatives are reliable reactions. But I guess here, one single event like this where patient and doctor donīt totally agree on what triggered the symptoms will just have to be put to the side....

They took so many tests. Actually three pages full of long columns!!!! Today was heart ultrasound, exercise test and more blowing! The O2 only dropped to 98 during exercise. And now 95 after I got home...I drove!!!!!

But who would have thought to take tests whilst you are feeling normal?! Not me!
It is not an idea that would have ever crossed my mind

So thanks to you and Alice for all the advice. I now have my normals for reference in the future if I ever get severely out of breath after antibiotics again or upon minimal exertion - (putting on my jacket, finishing a sentence or climbing 2-3 steps)

Have a great day,


Anacrusis

[AnnieB3]

Metacholine was the last test. The muscles started trembling almost immediately after the first inhalation.

Methacholine is the only drug they keep repeating that much. And they give it first. They don't normally give more than a couple puffs of Albuterol or rescue inhaler. Did they give you only one puff of the Ventolin?

Today the pulmonologist told me that it wasnīt the metacholine that I reacted to but the albuterol, which I guess would have made more sense in an almost myasthenia free person!

No, that does not make sense at all. You said that it was BEFORE the Ventolin that you started shaking. Why didn't you clarify that with her? What is the truth?

If you haven't had a cardiac evaluation, you might want to consider that.

Anacrusis, When you go through any doctoring, YOU need to be aware of what is going on and when it's going on. I don't know what just happened here but it's left me feeling very uneasy.

Annie

http://www.meddev.ca/provo/ca/en/pre...tion/warnings/

The patient must never be left unattended during the test.

[Anacrusis]

I am correct.


1) The doctor wasnīt in the room and I did not see him until at least 20 minutes after the test.

2) I was guaging to see if the assistant would stop the test when I started trembling.

3) I was staring at the gas cylinders wondering which of the 2 cylinders was the culprit during the inhalations.

4) I was trembling at the same time as I had my mouth on the static mouthpiece attached to the machine.

5) I was thinking perhaps everyone got the shakes from blowing that much air.

6) Then I got oneīsipīof Ventolin which I actually thought would make things better.


It is sorted now,

Thanks much.


Anacrusis