A newly diagnosed friend - questions
 

Hello,
I am new here and i am posting for a friend. I also have a chronic illenss and have learned how useful these forums are, she does not recognize it yet. First of all let me thank you very much for being so active and so clear. We have learned a lot in the last day just from reading all the posts. Particularly thank you to alice on the alien's story!

My main question is about consequences of anesthesia and surgery.
Here is my friend medical history:
Probable myasthenia for at least 4 years now, she is 38
Came afte birth pf second child
Never confirmed by tests although various indications. Doctors keep saying it's not myasthenia but don't offer alternatives either, someone suspected cfs
Main symptoms have been fatigue, a leg that does not move properly, at worst impossibility to climb even one stair, minor ocular symptoms on one eye at the very beginning
She has been treated with steroids in hospital when she was at her worst, then recovered and the last year or so had been relatively good.

Two days ago she had an emergency surgery for an ectopic pregnancy causing extensive loss of blood. She had normAl anesthesia and was in respiratory failure after surgery so she had to stay in the icu intubated for about 12 hours.

Now she is in a normal ward and feels decently although extremely weak. Doctors have said her reaction was typical of myasthenia and so now i don't think there is any doubt she has it.

What should she expect now in terms of recovery? Will this incident make her illness progress and get worse. She also had a transfusion with 1,5 litre of blood lost so she was almost dying.
Also is there a risk shemight have another respiratory crisis as the days go by?
She is given morphine, is that makinng things worse?


Sorry for so many questions but iam worried....
Thank you!!

Hopefully someone else on here can better answer your questions, that has a more confirmed diagnosis.. I don't have a firm diagnosis, but seronegative MG is high on the list.. Similar to your friend I developed symptoms with pregnancy.. the birth of my 2nd child, during the epidural, they almost had to intubate me.. they were all perplexed, as I was as well... I couldnt' breath, talk (without slurred speech) or move my arms or legs for hours and hours afterwards.. I then also had a minor procedure go wrong (I had an IUD placed, and they perforated me- lots of internal bleeding)ending up landing me back in the hospital with blood transfusions.. and it was all downhill from there!!

are her dr's going to initiate treatment at this point? I would say it's hard to know how she will recover, as it sounds lke she has two issues, the surgery, blood loss and then whatever neuromuscular disorder on top of that.. any physical or mental stress will of course exacerbate symptoms and make recovery harder..
As far as the morphine goes, I'm not sure if that is contraindicated in MG or not.. I know when I take ANY sedating meds my symptoms get worse..

Good luck to her, and your a great friend for doing research on her behalf!

Hey Suzanne, welcome to this wonderful group of people who are a fountain of information.

I was diagnosed with MG about 3 1/2 years ago and was told there are several indicators of the illness - problems with ocular muscles, swallowing, lung function, lower body weakness or generalized myastenia. I have generalized myastenia although my main problems are ocular and lower body weakness.

I have been told that I can't be given anesthesia because like your friend my lungs will stop working correctly. I did have emergency colon repair surgery not long after my diagnosis and they had a hard time getting my lungs to function afterward. As a result of the colon repair I had an ostomy bag for two months. When the time came to remove the bag they had to numb my body from just under my breast down to my legs with a spinal block.

So this illness does effect what medical procedures that can be performed. You have to make sure your doctor knows everything about your medical history. And as I discovered a lot of doctors do not know enough about these things, so your neurologist should be involved in any possible medical procedure.

I'm by no means an expert on this illness, just wanted to let you know what my experience has been.

Southern Bell
:grouphug:

Hi, Suzanne. Welcome to the forum. That's very nice of you to help your friend this way.

Was your friend given any drugs with a high dose of magnesium in it during birth? That can sometimes bring on MG. So can a sudden change in hormones.

Anesthetic drugs like succinylcholine can block acetylcholine (our muscle gas) and muscles can get weaker.

Pain drugs like Morphine can sedate an MG patient to a very severe degree, causing that very same situation which your friend found herself in. I can't take it for that reason. It made my breathing moderately severe. Also, her anemia will affect breathing too. So she has 3 things making her breathing worse! Tylenol/Acetaminophen can be just as helpful for pain and won't make MG tank.

She is at risk for another crisis, particularly if she doesn't have enough treatments or does too much. Right now, she needs to rest as much as possible. Nap too. Was she given Mestinon to take? Steroids can take awhile to kick in and can make a person temporarily weaker before they get better. Is she still on steroids?

There's no way to tell how MG will progress in each person. It's different for everyone. It's important to stay in touch with her neurologist if she gets worse. Common sense, like alternating activity with rest, is very important. Staying out of extremes of hot or cold weather is important too because it can quickly make MG worse. Some drugs, like she has discovered by accident, can make MG worse. Go to www.myasthenia.org for more information.

Please keep asking questions. MG has a big learning curve. I'm glad they were able to help her so quickly. If it helps, I've had MG my entire life, have had an MG crisis and MG exacerbations and am still here! MG is manageable but you do have to understand it and not push the disease.

Tell her not to fear intubation, if it has to be done again. It helps her breathing muscles to rest while something else helps her do it. Although there are other ways to help with breathing that are being used more often such as BiPAP or CPAP machines. She should ask her doctor about that for use while she recovers, like for when she sleeps. Breathing gets worse while sleeping because - in general - everyone's muscles get weaker while sleeping. MGers muscles are weaker to begin with.

Since she is anemic, taking iron with vitamin C (chewable, for example), will help her to absorb iron more quickly. Don't take calcium within a couple hours of taking it.

If she can, when she's better, she should find a good pulmonologist. Neurologists don't have an expertise in that area and MGers have a very specific breathing pattern and breathing tests which show that. A pulmonologist is essential to have, especially since they are the ones who can help avert a crisis and they work WITH neurologists in a hospital to treat an MG patient.

I really hope she continues to get better. She'll need extra help for awhile. Like use paper plates for eating so no dishes have to be done. Sit or lie down whenever possible. Keep her body temperature as normal as possible (not too cold/hot).

If you have more questions, just speak up. There are a lot of people here to help and your friend really needs it right now!

:hug:
Annie

Thank you
 

Thank you very much for all this useful information. I did not know about magnesium drugs and it's very intresting.
Also the iron importance.
She is now off morphine and on iron so this will help.

She is not taking steroids or mestinon yet as she still has to see a neurologist.
She had almost no symptoms before the surgery so i hope that she might go back to that situation without medications. But she needs a proper doctor to follow her asap.


Thank you again!