[Annie59]

I saw my pulmunologist Tuesday and while I am still not fully myself as it was so scary it was a crucial appointment. He said he is gonna try to set up a chemical challenge for me when I come to see the new neuro next Tues.

He did asked about my swallow and had me swallow water from aglass. He said do you always swallow so little? then he asked me to swallow the whole glass after he apologized as he kept doing as he could tell how much worse I am and he was putting me thru paces. I tried to do this and it turned into this big wicked show that I cant even begin to explain. But him and my duaghter seeing this was important. I have learned to accomodate so much over the last few years so I can eat and drink and so I dont always think to bring this up. I have my swallow worsen since I got worse the week my mom went into the hosp and I was on so many phone calls with my sis and the medical folks. He also had me try to lay flat and breath. That was excruciating and embarassing tho I guess at this point nothing should embarass me. He asked me to relax but how do you do that when you are fighting as if someone has a pillow over your face?? This brings tears up. But that day I had to focus on gettting thru.

When I tried to do the intake I was only able to talk in short halting pieces and turn it over to my daughter alot. He asked if I cough and I said no but my daughter said yes and described how I go into these coughing fits.

We went over that I am now taking more mestinon and the only barrier to more is the diareah and the higher hydrocodone I am helps that but I dont want to use it that way permamnently. I told him taking it more often in the smaller doses works better for me.

It was all very good tho horrific for me personally to go thru. But to go thru it with him was a blessiing cause he really dose care and will make sure I get diagnosed and that the new neuro works aggressively towards this. This made the neuros job easlier next week.

Last summer I went to the ER twice and it was not useful in fact one hosp the doc mocked me and said to give up. In the past 2 years I have learned so much and will go if needed but I do know how much good I can do at home if I just do absolutley nothing and rest. And use things like cold packs on my chest and back of my lungs. I dont live in the same city as the univeristy I am treated at. If I get worse my breathing guy said he will be there in a heart beat. That is 45mn away. I just cant talk as part of the deal of total rest so the notice saying my medicaid was canceled which was a crazy mistake but needed a call was bad timing. And my home aid comes tomorrow and I have to commit to not talk to her and write messages only. I hate that. She is very new so I cant just let her do her thing as he is still learning.

Ok this is the good and the bad of what happened Tues and bit since. Last nite breathing was tolerable, but had extra trouble and had to eat and take more mestinon during the nite which I havent been doing. That sensation that happens when its like there are walls locking down the flow of your lungs........ there is a certain point at which I just need a break from that. A break, an easing.

Annie59

[alice md]

"That sensation that happens when its like there are walls locking down the flow of your lungs........ there is a certain point at which I just need a break from that. A break, an easing. "

you certainly do. and that is why I don't understand:


why didn't he send you for a sleep study?

and why didn't he recomend that you have non-invasive respiratory support?

[Annie59]

Alice md, I maybe unclear here as I am still 'not right' in many ways from the stress of this week. Just ask if something seems weird.

About your remark...I was just gonna post to ask more about what I am experiencing. It has changed again. I know he feels a bigger urgency certainly than any other of my docs to get me diagnosed firmly NOW! Myself and my duaghter have been in close contact with him in the recent weeks as I have worsened. He is a very nice guy and kept hope up that my current neuro would step up to the plate esp since he had already had 2 conversations with her this year alone pushing her to do so. But now he has shelved that and knows he has to for get her.

I see the pediatric muscle neuro there Tuesday who he is on a treatment team with. He was concerned when my daughter called that I was coming that it would be too much for me and make me worse which it did. He knows from my history with other docs not necessarioy my current neuro that what I have is probably MG but I currently have a diagnosis of myositis in my face and myositis can have very similar symptoms as MG. Dr W my lung guy knows it is gonna take a neuro to treat aggressively what I have. He is helping getting this new neuro on board.

About a sleep study. He knows that being somewhere other than my home because of my sicca brings up a whole other set of problems. I would have to be given IV fluids and or have high humidity in the room to counter the dry air of a hospital. 3 years ago when I was looking into a sleep study for another doc it was my experience they dont do accomodations since they want all the problems to come out. He knows I am so fragil now that that would be dangerous. We went over that my mestinon is working for me and what helped or not. The raodblock to taking a high enough dose is the very painful -bowel cramping diareah I get the doses that work best. And sleep used to be an issue but is not now. I have asked my current neuro 3 times about some to help with the diareah but got nothing. I told Dr W, my lung guy I just discovered since 10-14 when I went up to 8 hydrocondone a day for surgery on mouth and the myositis headaches that I dont get the diareah side effect then. So for now I can take lareger doses.l Yesterday I was back up to my 08 and even a little more. I was on 120mg total then. Yesterday it was about 200mg total.

I am not sure what you consider noninvasive respiratory support so you need to tell me more about that. My duaghter has asked why I can have oxygen to a couple of docs as she worries about my breathing. Dr W said for medicare it takes a certain documented level of prob to prescibe it. With the variablity of MG that can be a trick. My daughter asked yesterdaY IF had a call from there as she hoped the 2 tests I did manage to get thru in the lab would prove more. I had just finally been tested later in the day for the first time. This was after pushing the point that I am always stronger and better in the morning. This took him to sched tho personally as all his staff would never so this.

The 'walls' are worse. This has been a terrifying week. I feel that there is somethign new going on that is causing spasming thru esophagus/tubes into chest. This came on the week I ignored the signs to stop when my breathing was getting so weak and kept talking to my sis about my mom to help. Yesterday was the first time I had a real shift. It was at about 2:30 after a 30mg dose of mestinon about noon. I started to feel it about 2pm. I had gotten alot worse again because my home aid came at 1pm so had to talk some. It was a juggling act. I couldnt take too much hydrocodone as that would depress my breathing. So I cut back but timed the doses to stop the impact of the mestinon on my bowels.

I would be intersted in hearing what you meant by noninvasive help.

Annie59 now if someone would just come hold me a little while.

Originally Posted by alice md

"That sensation that happens when its like there are walls locking down the flow of your lungs........ there is a certain point at which I just need a break from that. A break, an easing. "

you certainly do. and that is why I don't understand:


why didn't he send you for a sleep study?

and why didn't he recomend that you have non-invasive respiratory support?

[alice md]

non-invasive respiratory support, means that you have a respirator, but it works with a mask on your face, not a tube in your throat.

there has been a lot of progress in this field over the last few years, with better respirators and better masks.

it has been shown to improve the quality of life, functional ability and the outcome of patients with various myopathies, and neurological diseases, . and has even been used to some extent in patients with MG.

I use one on a regular basis. there are times in which I have to use it every day and even a few times each day, and times when I only need it once of twice a week. depending on the fluctuations of this "crazy" illness.

I have a mask that allows me to work on the computer, read etc. and another one that I use when I am doing less well and covers the entire face.

without this, I would not be able to function in the way that I do.
I have been through a similar ordeal to yours, so I know to some extent what you are going through.

[Annie59]

Alice md, can you direct me to info on this? I saw a piece on respiratory intervention and tried to find a picture of it, of it in use. My brain drain is so intense I guess the 4 year old approach of pictures is where I am at.

Are you saying you have experinced 'the walls' in you chest? I guess I am not sure if I am at a new level or if possibly the myositis has gone into my chest. I will bring this up Tues. I suspect it is in other areas other than my face as a persistant pain in my left thight just below the joint and to me clearly in the muscle got better as my face did too.

Annie59

Originally Posted by alice md

non-invasive respiratory support, means that you have a respirator, but it works with a mask on your face, not a tube in your throat.

there has been a lot of progress in this field over the last few years, with better respirators and better masks.

it has been shown to improve the quality of life, functional ability and the outcome of patients with various myopathies, and neurological diseases, . and has even been used to some extent in patients with MG.

I use one on a regular basis. there are times in which I have to use it every day and even a few times each day, and times when I only need it once of twice a week. depending on the fluctuations of this "crazy" illness.

I have a mask that allows me to work on the computer, read etc. and another one that I use when I am doing less well and covers the entire face.

without this, I would not be able to function in the way that I do.
I have been through a similar ordeal to yours, so I know to some extent what you are going through.

[AnnieB3]

Annie59, Has a doctor fully evaluated your Sjogren's? Sjogren's, as I'm sure you know, can cause brain fog, breathing problems and many other symptoms, as well as the eye dryness. Have you been tested for lupus?

You have significant breathing issues but you don't seem to be able to tolerate more than a little Mestinon at a time. Is that correct or am I missing something?

http://www.sjogrensworld.org/brain_fog.htm

http://brain.oxfordjournals.org/cont...8/11/2518.full

I just hope your doctors are not missing something.

They can now do sleep apnea tests at home too, as well as an overnight oximetery which I had mentioned in one of your other many posts.

Your doctors should also, if they haven't already, be checking for other things like vitamin B12, thyroid, liver and kidney functions, etc.

I hope you can not only get answers but some much needed help.

Annie

[alice md]

Originally Posted by Annie59

Alice md, can you direct me to info on this? I saw a piece on respiratory intervention and tried to find a picture of it, of it in use. My brain drain is so intense I guess the 4 year old approach of pictures is where I am at.

Are you saying you have experinced 'the walls' in you chest? I guess I am not sure if I am at a new level or if possibly the myositis has gone into my chest. I will bring this up Tues. I suspect it is in other areas other than my face as a persistant pain in my left thight just below the joint and to me clearly in the muscle got better as my face did too.

Annie59

I am not sure if that is what you are looking for, but have found those videos.

http://www.youtube.com/watch?v=ESlZ06fimq8

http://www.handbooklive.com/product/114/

hope it helps.

[Annie59]

AnnieB3, Actually the only thing limiting my mestinon use now was its affects on my bowels which many people with MG have. I have asked around about this and there are meds that are given. When I was first put on Mestinon in July 08 I was on 60mg 3-4 times a day and no problems and it worked very well for my breathing. I could even sing alittle again. I hadnt been able to normally sing since 2002.
I took that level until winter of 08 when the cold improved my symptoms as it always does but my vit D dropped and my parathyroid elevated. My weakness is worse in summer and better in winter. Yes when I first posted here I likely talked about smaller doses but as of mid October when I went on higher levels of hydrocodone for a surgery the bowel problem was fixed as that drug counters the bowel problem. The last week I have taken increased doses of the mestinon as I have been worse and am up to about 200mg per day with nothing but improvement in symptoms. Unfortnately prostigmine still works better over all for me. It didnt affect my speech at a higher level like mestinon did.

I am a member of Sjogrens World. I have been since 2007 aproximately. I was diagnosed with Sjogrens in 2006 at the same place I go for my neuro and lung doc. The blood and lip biopsy were weakly positive. But my dryness was severe. When I went to Mayo for MG eval they disagreed with the Sjogrens diagnosis in 08 winter. So now I just have a diagnosis of sicca. I know that bad Sjogrens can have some of the MG symptoms. But it doesnt get better with mestinon like I do.

I have secondary health issues that interferred with my mestinon tolerance but now I am back to a normal does. The hyperparathyroidism affects my nervous sysytem. It 'amps' it up. I believe that is why when the mestinon hits my nervous system it hits all the bowel nerves and it sends me running to the bathroom. I didnt have the hyperparathyoidism in 08 nor was my neuropathy as bad as it is now, a possible factor. When I took that first dose of mestinon not even knowing what it was or would do I was struggling to breath in the hosp and I fell asleep at last. When the nurse woke me to see how I was I realized how free my breathing was and told her in surprise that I felt near normal! I will never forget that day. I am not a drug person but mestinon is a miracle to me. That was the hospitalization at the university for a myasthenic crisis that was recognized by another neuro my internist had sent me to. It came on during a shower that was hotter than usual during a week when my dad had gone into hospice. Stress plus heat ...........

I have had a thorough workup in the areas you noted. I have ANAs a different times since I started to notice I was weaker around 1999-2000.

Annie59

Originally Posted by AnnieB3

Annie59, Has a doctor fully evaluated your Sjogren's? Sjogren's, as I'm sure you know, can cause brain fog, breathing problems and many other symptoms, as well as the eye dryness. Have you been tested for lupus?

You have significant breathing issues but you don't seem to be able to tolerate more than a little Mestinon at a time. Is that correct or am I missing something?

http://www.sjogrensworld.org/brain_fog.htm

http://brain.oxfordjournals.org/cont...8/11/2518.full

I just hope your doctors are not missing something.

They can now do sleep apnea tests at home too, as well as an overnight oximetery which I had mentioned in one of your other many posts.

Your doctors should also, if they haven't already, be checking for other things like vitamin B12, thyroid, liver and kidney functions, etc.

I hope you can not only get answers but some much needed help.

Annie