I got the copy of the last swallow results. This was done in Oct. of 08. I never asked for a copy as they did the smiley face thing and suggested there was only something that could be nothing but a testing problem. I thought this meant they didnt find anything. The referred me to a swallow therapist but I was so sick at the time I was having to decide what appointments were priority. This was not based on how dissmissive they were. I knew there would be tips but I already had developed methods to swallow better.

This is the result: No evidence of aspiration. Intermittant mild penetration with thin barium.

This makes sense to me now as the thicker the better for me. It is always the water, the soda that makes me choke. I was on mestinon for that test infact far more than I am now as that several months I had no problem with 60mg 3-4 times a say.

Any comments on this would be appreciated. I have this test scheduled again plus the MRI of my thoat from my city ENT. He did a scope down my thoat in his office induding having me make sounds to see what happened. He orded further testing and asked if the Univeristy had evaluated me for ALS.

Annie59

HI Annie. I haven't been on this site for a long time. JUst tyring to figure out what your diagnosis are? You have MG. Do you also have DM or PM? I ask because I have MG and Dermatamyositis and have never talked to anyone else who had both disorders. I also have COPD/Asthma and more..so 'they' tell me. All I know is my breathing is really bad. I do not have ILD yet! I've been in teh hosptial six times in a little over a year. Just finished five days of IVIG treatment. My neuro is very pro active when I'm sick. He puts me i the hosptial and that forces all the other Docs to come in and treat me as well. They actually have to communicate. I see my Rheumy tomorrow. She hasn't been to the hospital much ot my amazement! She recently put me on Methotrexate. I take 24 drugs now. Not all are agreeing with me. I just don't know for sure which ones are wrecking my stomach. I'm going to see a rheumy at JOhns Hopkins Myositis Center in May. All my other docts have said I have to get my DM under control. My Neuro wants my MG under control. I just want to feel like a normal human! Hope to hear from you.
Ellen

Hi Ellen, I am fairly sure there is myositis in my body. I new current neuro said the words that did I consider that I may have polymyositis. He said it would take a biopsy to be sure. Did you have one or how was it confirmed. Oh wait you said dermomy so that may not need one.

I am just quickly checking in here as I am in recovery mode. Worse from the long trip to new eye specialist. Will post on that good news separately.

My breathing is really bad. To find a pulmo that gets myasthenia affects is hard. Are they sure about the copd and asthma? I have an angel of a pulmonologist and saw a good one at Mayo Clinic who did a sniff xray on me that proved half of my diaphragm is paralyzed already. If not for him at Mayo my case was about to get dropped again cause I got a nasty neuro up there that doesnt believe in seronegative MG. He wrote a letter saying she should have sent me back to him for more and wrote a very good over view of what he did she which neuro had dismissed.

We can talk more later if you like. I have another doc appointment tomorrow and a new crisis have arisen but I will try to get back here.

Annie59

Hi Annie. Thanks for the reply. I am sure I have DM. Had a biopsy done at Johns Hopkins. While my Muscles, for the most part, seem pretty good, my breathing is really bad. I can only tell you that my Pulmonary docs here say I have some asthama and COPD. Cetainly came on pretty fast. I have alwqays wondered about both. Didn't have either a few years ago. MY MG was diagnosed a little over a year ago. I have never heard of a sniff xray. I'll have to look into that. I'm going to see another doc at the Myositis Center at Hopkins in May. They have pulmonary, nero and rheumotology there. Thanks for the info. Write when you can. I'll be thinking about you.
Ellen

http://emedicine.medscape.com/article/298200-diagnosis This one seems to be a good illustration of the sniff. I just had to stand behind an xray unit and sniff. It is a live action test they would film not a still like a standard xray. I had a nasty namsy ER doc once do a standard xray once when I came in ambulance. He said see! You dont have paralysis. I havent been back there since. He even went on to say dont you get it? Why do you keep coming in?

http://m.commercialappeal.com/news/2...tects-trouble/
This one is a doctor question from a patient who had one but didnt know what it was.

If not for my pulmo haivng treated me for the Sjogrens affects on my lungs, and breathing probs that went beyond that I wouldnt have had his backing as soon. HE was the first one to say you need a GOOD, really good muslce neuro after he did a pulmonary exercise test that ruled out the kind of fatigue seen in Fibromyalgia or CFS as they is why I could get a neuro or even my internist to take me seriously.

I didnt know about this test when I left Mayo leaving me so devastated. It is one of those cases where the neuro seemed to not see the truth. NOt want the truth. I connected with another woman who went there and got the same doc. She was even harder on her. during the history she started yelping at her to stop doing things, stop doing her symtpoms as if she was faking. After several of these the woman clear from New York there in Minnesota walked out and flew home. She said that tho this was all the doc did she wrote a report saying it was not real to her doc. After her story I knew I got out lucky. NOt unscared but lucky. I was in the waitng room weeping uncontrollably after they wheeled me out of her office at the final visit. A lady came up to me and was like an angel. This complete stranger sat with me and comforted me reminding me of the good in this world.

Annie59

Hello, and I read the thread. I do not have the mentioned problems but I do have trouble swallowing. My PCP has ordered me to an ENT specialist. He wants them to take a peek down my throat and I am afraid. Would you please tell me what to expect with this test. I already swallowed some bitter stuff a year or so ago. I have many nodes in my thyroid, and have had two cervial ops. I am fused C3-7. The last insision was long in my neck. It is 8 months post surgery and my doctor no longer thinks this is normal. Thank you. ginnie

Just had another thought, actually remembered something I read when I first was looking into myositis. There was something about a person with polymyositis having affected muscles in the throat spasm. This sounded more like what I was experiencing when in October after pushing to talk when mom fell I ended up with muscles, tissues seeming to lockup in my throat. It was like trying to push words out of hard stiff tissues. The opposite I guess of the feeling of no response when your breathing muscles are so weakened you feel nothing, no response. I could see it in my pulmo the day I saw him that it puzzled him as I had this halting new thing when I talked.

I told the ENT I would make every effort to get the MRI and new swallow study done by end of February but it has been so crazy with other stuff it didnt happen. It is at the top of my list to do but it didnt get done. Just ignoring the usual down time I need and going out 3 times this week since Tuesday has me in big trouble with my breathing today and even my body as a whole. I am as weak as a baby.

Tuesday I went to hospital to get the fluids I really needed cause I was so so strangely dry and weakened and took my vitamin D 50k with it. The Wednesday was the long day to eye doctor I wrote of here that sure was worth it but a big big push. I admit I talked too too much with my daughter in the car. It is hard to not talk when I'm with them. Then Thursday my grandduaghter came for the day and with the apartment news I had to do some calls on new appartment business. Friday I had to go see my pcp for morphine renewal as he refused the day before to talk to me by phone on my stomach pain and morphine issue. It is no wonder I feel like this today. I know better. I got such an initial boost from the IV fluids on Tuesday I guess it gave me a false sense of strength.

I gotta do some brain storming on what needs to take priority while I am getting the rest I need this weekend. I want to go for my fluids Sunday cause I am so dry again but have to weigh that with all else. At this point I am scheduled for the abdominal CT on Tuesday and my eye surgeon Friday to do the lazer surgery on my left eye and measure my right to have the other cataract removed on April 11th. An April 11th surgery is against my rule of nothing the week before family birthdays to be sure I get there. The 16th is my daughters and her 3 year old son. I wasnt thinking obviously when I scheduled that. Or forgot to move it. I am so brain drained and weary. I really need a whole week down to rest.

Annie59

Hi. I just want to thank you again for all the info and the lins. It is not easy ahveing MG AND DM. I recently stated Methotrexate which I take once a week on SAturdays. I am taking the smallest dosage and I'm still feeling sick. Hopefully tomorrow will be better.
Keep me posted on how you're doing.
Ellen

ginnie, about the ENT, at the visit I had he ran a scope down right away after hearing my swallow had gotten worse and my ability to talk. NOw he works with kids too so I think that is why is did this all very fast with little time for me to get worried. It was no big deal except I need to be sure the docs know that I can get worse with any sedation with my muscle weakness. that is what happened. I called back and asked what he used and he used lidocaine and afrin in a spray that was in my mind way to liberal for me personally. Everyone is different. He came thru the door and immediately started to spray it up my nose and sprayed and sprayed. They he put the tube up my nose and from there down into my throat. He asked me to make some sounds so he could see my vocal chords move.

My daughter and I left the room and I sat till this staff person took us to set up the MRI of my throat and swallow test. By the time we were about to leave I felt I had become alot weaker. When I got home I needed to eat and was so exhausted I wasnt thinking clearly and ate anyway. Bad idea. Something went into my lungs causing me to have this scary thing for over a week.

Just be sure this person knows to be careful with the anesthsia and dont eat till your sure you can after and you should be fine. I really didnt feel a thing when he did it and was grateful that he took me very seriously.

Annie59

Ellen, I am just sitting here this morn knowing I need a specialist for the myositis. Me off the steroids cause of my digestive problems has the pain returning.

Annie59