Hi :)
I don't know how to explain this but sometimes my breathing is strange. Every so often .... but only 6 or 7 times a day - I suddenly take sharp intakes of breath that I have no control over. Like sniffing sharply 3 times in a row. It's quite noisy. According to my husband I do it in my sleep too.
My lungs are OK. I had a scan. The doctor does wonder whether my diaphragm is OK because after exercise I have lower than expected oxygen saturation.
Anybody any ideas about what's going on? Have tried googling but it's hard to explain what I'm on about.
Take care -Scottie :)
Myasthenia can affect the diaphragm. Have you got any other signs of myasthenia like ewxcerssive fatigue that improves with rest, droopy eyelids, double vision especially towards evening, problems swallowing or weakness in long muscles. For years I had so much weakness and fatigue and had to rest at least once a day. I also would have times when I felt like I was going to stop breathing. I told so many doctors about the breathing and they would just say it is from your asthma. Well, I had asthma but eventually I would be sitting at the computer and would feel like I had a rope around my lower lung area that was getting tighter. This was about the same time that I noticed the droopy left eyelid.
I had wondered at time about myasthenia but the doctor just poo-poohed it and I went on with my life. I even had elevated anti striated muscle antibodies in 2001 at the Mayo Clinic and they ignored it. Normal was 0-70 or something like that. When I got diagnosed in 2006 by the immunologist and this same test was 62,000+ and he said it was one of the highest he had ever seen. Soooo, moral of the story is....maybe this is something that you should have investigated. The muscles of the diaphragm can quite working and respiratory arrest can happen which is a very serious occurrence and if a myasthenia patient lives through this and is taken to ER early enough to be saved they usually end up with a minimum of 2 weeks in the hospital.
Have to intubated and special drugs given including steroids and plasmaphoresis. Might be worth being checked for this Scottie. The muscle testing or EMG never showed anything ono me but the blood work it the one that showed up my disease. Hope you can get some answers and I will be thinking of you. Also, it occurred to me just now that there could be some other neuropathy that is going on to make you take those deep breaths like very bad air hunger. Neuropathies are so common in all autoimmune diseases. Good luck in this search and please let us know how you are doing. meirish
Hi Irish :)
Interestingly my GP has referred me to a neurologist to check for just that. Myasthenia isn't meant to hurt is it?
I hurt all over and have certainly lost muscle tone. Got stuck on my daughter's settee and literally could not get up without help.
I don't have droopy eyes but the optician recebtly referred me to an opthamologist because apparently they don't move up the way any more when following a torch.
I get to see the neurologist in October - though I don't understand why the GP can't take a blood test and send it off.
I walk every evening but I always feel as though the oxygen just isn't reaching my legs.
Thanks for the answer.
Take care - Scottie :)
Scottie, I have times when I have pain in my legs, mostly above the knees.. I also get sharp nerve pain in my legs at times. As with other autoimmune diseases the owies come and go and trade themselves for various other issues. I was put on IVIG back in 2006 and I do think that I would be in much worse shape without it. My swallowing is better but still comes back to pick at times. I do still tend to swallow and have food come into my nasal cavity but doesn't come out my nose as much as it did years ago. If swallowing and trying to pick something up off the floor the food will go into the nose. I have lost muscle tone in my muscles. Mostly the long muscles in arms and legs and do have trouble getting out of a chair plus for years I have had trouble getting up off the floor. One time I got stuck on the floor for some time before I had the strength come back enough to crawl and find something to lean on to help get myself up.
My worst episodes are not as bad as they used to be but I have times when I can only just sit in my chair and sit very still. Don't move a muscle because I am quite weak and then don't want to expend any strength as I may be having some weakness in my breathing and don't want to exacerbate the weakness in my diaphragm. Years ago when I was struggling with a lot of autoimmune stuff and working as I nurse I had a heck of a time inflating ResusiAnnie and now I know why.
I can't plan ahead much with activities as I know from experience that I could get up in the morning (my weakest time for some reason) and just not have the strength to get up and about. Usually taking my Mestinon (for weakness) and having a nap will give me time to get my strength back. When I am still up and walking about and shopping or even around home, etc I notice that I have problems picking my feet up and will sort of shuffle. My worst falls have been when I have started to walk or attempt to pick my feet up over something lying on the floor and not have the strength to complete that task and down I go. I have had 3 bad falls in the last 3 years and 2 of them caused damage to my left toes and ended up having my 2nd toe amputated.
I have been on Prednisone since 2005. Started on 10 mgm every other day. My neurologist has all her MG patients on this schedule as it gives a buffer or protection for times when breathing gets weak and can buy some time to get to ER. I asked her how you know when its time to go to ER and she said when you wake up staring at the ceiling in ER you will know. I ended up on daily prednisone for a many years and am trying to taper down again to the every other day. I have so much trouble getting off as other ailments rear their ugly head when the dose gets lower on the taper day.
You learn to know your limits and how much you can push your energy limit. Usually after an afternoon of shopping and going to the doctor I am shot the next 2 days. Just have to rest. I can't do physical exercises as they take too much out of me. I can walk with my walker or the grocery cart of some distances but wear out pretty fast and just go and sit down. The thing is, with MG you have other ailments that are the same as some of the other autoimmune diseases so there are days you have no clue why you ache, have balance issues, have some muscle spasms or some double vision. Makes life interesting. Much better to have to when older when the kids are raised. Would be hard to have young children as the child care and house work and washing would just run a person down. And then there is the cooking. Boy Moms sure to a lot of work don't they. Husbands would have to really help more.
The weakness one gets over the body and sometimes the diaphragm is almost unexplainable. It is like someone drained the energy out of your body and you feel like you could literally slide through the chair onto the floor. Your core strength is just gone. I have had these extremely weak episodes for probably 20 years or more. Much worse prior too diagnosis and have improved with the IVIG.
I am so glad that your doctor is getting you to a neurologist for testing as you seem to be having some issues that need to be addressed.You may not have MG but there are other autoimmune diseases with similar symptoms so seeing neurologist is good idea to rule out things. I had a MRI of the brain with my first neurologist visit to have a baseline as other diseases can come along and want to know for sure what is going on at that first visit. Sneaks up on a person. Good luck. meirish
Thank you so much Irish. You are always so very helpful. Guess I'll have to wait till October for any kind of definitive dx.
Interestingly - a couple of years ago I had a fundiplication to ease heartburn that was getting out of control despite Omeprazole. They couldn't do a full wrap as both end of the esophagus showed up motility issues. The partial wrap did the trick though.
Maybe connected.
Thanks again
Take care - Scottie
In January of 2000 I started hacking BB's----like little small mucus. It just was almost constant at times and not one doctor had a foggy clue what was going on. It wrecked my sleep big time.I was lucky to sleep 3 to 4 hours a night and it would take me about 3-4 hours to get ready for work as I was so exhausted and weak. Luckily I had a job where I could set my own hours.
I could not sleep on my back because the coughing got worse. I ordered Kleenex 35 boxes at a time from the grocery store. I went through 10 boxes of Kleenex a week and had a waste basket next to my recliner, my bed, my special one in the kitchen and one in the car. It was not a bad cough but just had to get the mucus out of my throat for some reason. No autoimmune dx at this time.
I drove my great ENT nuts and he even did a really in depth exam of my whole ENT area in the OR under anesthesia and it took 2 hours. He did end up cauterizing a couple areas on roof of mouth that were benign. I later came to the conclusion that maybe they were small ulcers that autoimmune people have in their mouth area.
This went on and on and then I started having all these weird infections and many staph Aureus infections in sinuses and chest and then the mycobacterium kansasii in lungs, spleen and liver. I was seen by lots of doctors at the University of MN and finally dx with Sjogrens in Sept 2003 and earlier 2002 BUllous Pemphigoid by my dermatopathologist back home. The infectious disease doc at the University did a lot of blood work but she never checked my t-cells!!! Then I saw my ENT for another visit and I told him that I had just finished a one year treatment of 8 antibiotics a day for myobacterium infection. He was sitting on his little stool and slid it across the room all the while loudly saying...why did you have that? You shouldn't have had that. Only immune suppressed patients have that. Then he said..Have I got a doctor for you. AND he did.
Across the hall from ENT's office (where I had been going for a few years) was the immunologist office and infusion center. This is the doc who diagnosed me with Myasthenia---when he saw me in 1 minute he told me you have MG. He said that I had a strange talking voice that sounded like I was in a barrel. And yes, I had that since I was about 28 years old and other neuros and docs never noticed it. He also saw my small eye droop and there was one other small thing. The big susruprise was my severely low T-cells. He is now retired and was a great doc and treated patients who fell through the cracks. His patients were a motley crew of diagnoses for sure. He was an internist, pediatric oncologist, immunologist and allergist plus did hematology and some type of pathology. He had been in charge of the bone transplant team at the U of M years ago and saw so many sick people that he went into practice for himself. Took care of so many sick kids. He was a blessing.
Anyway, the hacking has continued all this time but is much improved. My ENT finally figured it out and it makes sense. He said that the muscles in my throat and upper palate area were affected by the MG and made it impossible for me to keep up with the normal drainage of mucus that all of us have from our throat, airway, sinuses, etc. The IVIG has improved the swallowing so this is better.
I also had several swallowing videos and one showed that I had 3 areas of very slight problems with swallowing. One was in initiating my swallow. I saw speech therapy and learned a few tricks and gradually I was able to quit using pudding when I took my pills. Lettuce would make me choke a lot and I still have some problems with swallowing but it is much better. Again, this long term IVIG has made the difference as I can't take methotrexate, cellcept or imuran because I get infections. I was an am a challenge to him and sort of high maintenance which is true of most autoimmune patients. As long as I was having a fairly good life he finally said no more meds as I did not do well on those higher tech things.
Just to let you know that there are some really weird things that can happen when some of out little muscle groups don't work very well. Also, the low t-cells always kept him on his toes as he said I was as bad as an aids patient and he watched me for the aids pneumonia that usually killed quite fast. He could never nail the t-cells down but they did improve but weren't normal with the IVIG. He said the t-cells I had were working like little troupers to keep me alive...320 was my lowest count and normal is 1100 to 1600 if I remember correctly. I did get up to 800 or so and was having much less infections. He could not pin it on the thymus gland which can get involved with the myasthenia.
Sooo...our fight continues girl and does keep us fighting doesn't it. Take care and good luck. merish