Was diagnosed with this condition yesterday. Been having issues for the last 6 months and more, but the doctor thought I had a stroke. Had a CT scan and 2 mri's looking for it. Finally the optamologist had me do some blood work and found this thing. Google has quite a bit of info on it, so reading up. Was planning to have a woodworking retirement, maybe the medication will help. Myasthenia gravis
I hope the meds will help.
Seems like a rare thing to have.
I will be thinking of you.
Sorry to hear this farmfromkansas. At least you know what your dealing with now and be treated. Heres hoping the treatments can help and keep us posted.
Prayers for you, hoping the meds help.
I had to look it up. I hope you can control it well enough to keep doing what you want to.
Thanks for the encouragement.
I'm so sorry to hear this!
When I was in the Gulf they gave us Pyridostigmine Bromide (we called it PB later) to combat nerve gas. I later did research and learned it was experimentally used on patients with MG but didn't work well.
As I recall it is a disease which causes the loss or lack of production of enzymes but I can't totally remember since I did all my research back in 92 when I was really sick.
I hope and pray they have new meds today and that they work for you!
Erik
Had a catscan of my thymus gland on Friday. Read that sometimes the gland gets a tumor and makes things crazy. Hoping it has a tumor so can get it removed.
Sorry for that diagnosis. Will be praying for you.
I guess the positive thing is that once you are diagnosed, there are then treatment options. Seems no cure as such, but there are medications and procedures that control the symptoms before they get too serious.
Thinking of you FFK. Let me know if I can help.
Got a call from Dr Weiner today, he said there is no tumor on the thymus gland, but they found one on the pabcreas. Said that this is the best time to find it, when there are no symptoms. Wants to get something going next week.
Had a biopsy done, and got the results Friday. They say I have a gastrointestinal stromal tumor. Started in the stomach somehow. Googled it, says a rare form of cancer. Saw Dr. Weiner, he said once it is removed all the crazy Mayastenia Gravis symptoms should go away. Called MD Anderson in Houston to see if I can get in there to treat it. My neighbor Mike has been going down there for 30 years and they have kept him alive, so thinking that is the place to go.
thoughts and prayers for good luck and good treatment. Outside of my realm but let me know if I can help. Doc.
Not a great thing to have, cancer, but at least you know now.
farmfromkansas,
My sister has Myasthenia Gravis- you need to get in to see a Neurologist and try to find one that specializes in neuromuscular diseases if you can, it is rare and most Dr's don't know how to treat it, they will give you pyridostigmine/mestinon and that can help some but there is other treatments for it. Your DR saying it will go away or calm down after your other treatment doesn't sound right at all. MD Anderson is a great place, all Dr's in one place and they work together, and everybody there is so nice. she goes to the one in FL. Hopefully you can get in.
KUMC has a neuro muscular department, at the Langdon center on aging clinic near KU med. (913)-588-1244
They gave me a patient number, and they want all my records from the local health center. The wife called this morning and gave them a number to get in, and a phone number if they can't. Saw a neurologist, he said all my symptoms are not right for Myastenia Gravis, but the antibodies to the tumor are what are causing all my symptoms, so hopefully they remove the tumor, the symptoms go away.
Doc, went to KU med center monday, they were going to set me up with a neurologist down there, and then they found out the results of the biopsy.
Dr Weiner wrote Eaton-Lambert syndrome on a pad to let me look up and understand what is going on. It is Mayastenia caused by a tumor.
dr
Got back from Houston on Thursday night. Long trip by car. Luckily my neighbor Mike drove down. We arrived just in time to greet the hurricane. We checked into the hotel, and saw what a category 1 hurricane can do. Thought the windows might break, but they held. Like a fire hose spraying onto glass. Took off shingles, and the roof leaked, we were on 2nd floor and the upper floor caught most of the water, but we had to put a trash can under the fire sprinkler to catch water running out of the ceiling. Next day the hospital was shut down, we looked around to see where to go, saw a surgeon and a internist and the anestheologist, The surgeon said they want to test my biopsy for dna, to see what medicine they can use to shrink the tumor. The internist stressed I must find a neuromuscular specialist to get my myasthenia under control before the surgery, as it can afffect my airway and they will not be able to do surgery without the specialist signing off on it. Will be getting an appointment at KUMC to see that fellow asap. Found the local health center does not do good CT scans, as had to do that over. They also said may have to get another biopsy of the tumor. The locals only sent slides, not the rest of the sample.
Farm, the number I listed is for the center on ageing and that is where the neuromuscular folks are. they just got a doc to replace the one I had and have called twice to schedule me in august, so you may be lucky if you call soon. I had to wait 4 months the first time. new Doc just getting rolling. I do not recall the nurses name or the new doc. You can drop my name as "told to get in soon" but not sure it will make a difference.
Hi Doc, my wife just got off the phone with them, and I have an appointment on Sept 17 at 8 am.
glad you got in relatively quickly. They spend more time on an initial visit and often need time for all the medical records to get there.
Going back to Houston tomarrow, the local first aid station did not send the whole biopsy the first request, so could not get started on the meds the first trip. Was told they need to test the biopsy for dna to know what meds work to shrink the tumor. They want to give me meds for 9 to 12 months before they remove the tumor, then I have to stay on the meds.
Sorry you are having this ordeal.
Finally got the meds in the mail, they are Imatinib 400 mg after taking for 4 days, no side effects so far. Do take immodium before eating, then take the pill after. 31 days till I get to see the neuro muscular specialist in KC. The nurses found an online pharmacy that sells the meds for about 10 percent of what they would cost me at local pharmacy. They told my wife half, but when it went down, 10 percent. Looked at the pics of that mill down east, price is right as well as being a hydraulic mill, if I knew what I was going to be like in a few months would have called and tried to buy it. But I can't drive now, and don't know if I would be able to use it.
Hang tough Jim!
Thanks Doc, nice to have someone for a cheerleader.
Got a 340B program in your state.
That has helped me a lot on the cost of my meds.
our hospital does that, see if your provider or hospital does. a care manager (social worker) at the hospital can help. sounds like you have done well for yourself. lets hope it all pays off.
Was concerned about the cost of the Imatinib, was going to cost 350 a month at the local pharmacy, but the nurse at MD Anderson gave my wife the name of an online pharmacy, and they sent in the prescription, and come to find out instead of 350 a month, was 35. So no need for any programs. Waiting to see what kind of meds I get for the myasthenia Gravis. Just seems like it takes forever for you to work your way through this health system to finally get some relief.
Dr Weiner called today, he is the opthamologist who found my problems, he said I tested positive for this eaton lambert syndrome, which is where the myasthenia gravis is caused by a tumor. Thing is, the tumor type I have is seldom connected to myasthenia. So he wants me to have a pet scan. He said it can be done in Salina, so I said OK. So maybe he will find the cause. Thank the Lord for Dr. Weiner.
You know that is an example of why we need the best and the brightest at the top.
Been having issues the last few weeks. We flew to Houston for the last appointment, then my wife came down with covid, then 2 weeks later I did, and also got pneumonia and a fib. Kathy rolled me into the car and took me to the emergency room at Lindsborg after the covid was over and I was not getting better, they kept me there for about ten days, then let me go home, and I was fever free for one night, then a couple days later she took me back. Second trip I was not dong well, and my daughter visited, and she said we have to get you to ku med center. They accepted me, and she sent me there in an ambulance. first time for that. But after that every day I got better, and the neuro muscular specials saw me there, and got me treated and on the proper meds, and my vision is getting slightly better. They said it will be very slow and don't know how far it will come back. But everything is much better. I was choking on water and that is much better and my strength is coming back slowly. Must have been seeing 17 doctors there, was a busy 10 days, and now I am on about 20 pills a day.
Godspeed sir!
find my right eye improving, getting some movement and can track what is going on on football games on TV. So that is big. Still can[t read a tape measure, but a little improvement gives me hope. And my right foot seems to be working better. The gap between my vision cant seem to move, optomotrist says he thinks it will come back, but those connections between nerve and muscle has to grow back in. My cancer drug, imatinib seems to be shrinking the tumor big time, symptoms getting better. Be interesting to see if the myasthenia gets better as the tumor shrinks.
Been messing around cleaning shop, and have been able to read a tape. My right eye is getting much better, especially today, and cleaned my store room, put stuff on shelf and off floor. Got on a lot of meds at KU, they are holding me back, but that is the way it works. Just glad to be able to see, hoping to regain focus at some point. Specialist said the eyes are the last thing to come back. Might have to try driving my truck soon, after a few months I am a little nervous. I had 2 employers when I was young who got by with just one eye, and they were good drivers.
farmfromkansas (https://forestryforum.com/board/index.php?action=profile;u=36643) Lost my right eye at 5 year old. been driving since 16. dl says rt outside mirror required. Almost no depth preception but live with it. Buddy on state patrol noticed I don,t see a car slowing down in front of me as soon but never rear ended anyone.
had appointment with the dr in KC yesterday, and he said i had come down with this weird infection called maya cardits which must have really drove me crazy, according to his timeline, must have been about the time I tried to call Doc Henderson. He said I had a butt dial. My wife called the ambulance, and they must have thought I had a drug experience of some kind, as it was very weird at the hospital. People cheering, weird experience, but it got a little better about the last week in the hospital, but very weird since I got home as it seems to have caused my other meds to go weird as well. they add some kind of antiseizure drug that makes you crazy to go with it. Just did not realize how weird till I get home, and got dehydrated till I just made meds seem so jjuch worse. The nurses would dump the pills in my mouth somehow, and pour in water at hospital, or maybe dump in glass and pour them down, and they tasted so bad, as soon as home just could not tolerat them and drank as little as possible to take the pills, made the symptoms seem worse. couldn't figure out why my mouth tasted so bad, was using some salt and scrubbing mouth with toothbrush and flosser and Kathy bought several other things to try to get taste out, and I tried soaking salt water in mouth, which maybe yesterday finally started being able to stand water. She has also been feeding me pedialite..They did put one of these pic lines in so I get infusions. Think I repeated some of this. Oh during this weird time he said my eye has improbed. Still have really bad double vision, but If I try hard can almost get them to come into focus. Really hard. Right eye seems almost normal, vision was really bad when dehydrated, can read a few words on tv screen now. can;t pick out shows yet. Was reallly disappointed to miss the election. did have the tv on in room, think it added to my crazy. asked the nurse what that infection was, she salid moldy heart.
The onlookninge before was what I meant, cpi;d not find post button so weht looking for it.
now just a couch potato did figute out some of wht Missed not having pictures, please send bill so I can add.
Hang tough FFK. sounds like it will be a long road so pace yourself. There are 3 parts of the heart that can get inflamed. pericarditis is inflammation of the pericardium and that is the fibrous covering of the heart. the heart is inside of a bag of tissue that can fill with fluid and impair the heart filling. endocarditis which is inflammation or infection of the valve tissue. usually, in IV drug users. and myocarditis which is inflammation of the muscle tissue of the heart. It will elevate the cardiac enzyme called troponin like a heart attack and weaken the heart, but the force often returns after recovery. Often the inflammation is in response to an infection, but it is really your own immune system that is causing the inflammation and injury to tissue. Best wishes for a speedy recovery.
What a mess!!!
Good luck to you!!!
I will be thinking of you.
You are right doc, really mixed up.
Think I have been negotiating with doctors, not sure i believe what they are telling me. But wife is watching out.
H ad really hard time finding this, yesterday felt a little better,, kathy said I could walk straight without falling, so meed to post , anyway head seems to work and no passing out, she has been taking me to dr every day for treat, said head better no weird things happening. said most of the awful pills gone asked which but cant remember.
Godspeed!
Great!!!!!!
They had me on 60 mg of prednisone, and have reduced it by half. kind of slowly letting off, guess because it was so long before I could get into KU, and Dr Weiner said he could only prescribe some med that did more harm than good, just a low dose of predisone would have been much better at the time. By the time I got to KU, they had to do some kind of dialysis treatment to lower the antibodies, and then go at it like they were killing snakes. Had a appointment with heart dr yesterday, she said looked like my heart is doing fine, then a MRI to check out my cancer tumor, meet with the local oncologist later today after getting infusion, The oncologist Patel in Houston had me get a local guy so dont have to make the trip, just forward the mri's down, so if they have to do surgery, then can go down. Physical therapist has been working on retraining my brain, exercises that help me regain balance and such. Need to get considerable exercise, kind of gradually, so regain some strength. Son dropped off a exercise bike so can use it in cold weather, has handles so I can use arms as well as feet, hope to get a little strength in my arms as well. Dont last long, but hope to improve that. Had to take it apart last night to make it so I could reach the handles. Maybe his wife will want it back when she figures out I fixed it. now if I could just get my eyes to focus. Seems like every day I drink a lot of water, feel better.
Quote from: doc henderson on November 24, 2024, 06:18:57 AMHang tough FFK. sounds like it will be a long road so pace yourself. There are 3 parts of the heart that can get inflamed. pericarditis is inflammation of the pericardium and that is the fibrous covering of the heart. the heart is inside of a bag of tissue that can fill with fluid and impair the heart filling. endocarditis which is inflammation or infection of the valve tissue. usually, in IV drug users. and myocarditis which is inflammation of the muscle tissue of the heart. It will elevate the cardiac enzyme called troponin like a heart attack and weaken the heart, but the force often returns after recovery. Often the inflammation is in response to an infection, but it is really your own immune system that is causing the inflammation and injury to tissue. Best wishes for a speedy recovery.
Doc, she said endo.