what is the first question you have?
Customer: Can myastinia effect your breathing in some cases
yes, it can, especially toward the end of the day when fatigue is present
Customer: Ok im at gym ill continue chat in a phew
Customer: Ok now i have had this for 11 years and its been ocular only symptoms ive had were fatigue little muscle weakness and side effects with meds but ever since march off last year ive had some terrible symptoms i dont know if you would like me to list them but ive been wondering if its been myasthenia that has started to effect my breathing continou all day
Were you diagnosed with MG by a doctor? Have you been treated for it?
Customer: I was i did 3 test for it the first sign was when i was little my eye turned in then 3 years later got diagnose i did a blood test that wax neg i did the electromagnetic test that was neg then they gave me a high dose off mestinon and it corrected my eyes then they told me it was myasthenia gravies thats when i was 10-11 now im 21 and been on mestinon even since for it
and what are your symptoms now?
Customer: In march last year i started to have allot off panic attacks
Customer: Allong with insomnia some breathing trouble, diarreah, muscle twitch, muscle pain, chest pain, worrying and stuff ok now i understand anxiety related
Customer: up to now extremely tired breathing troubles all day feels very shallow, short off breath, insomnia i worry and stress over nothing or little things, but i dont have any attacks any more but i still cant breath normal all day
these are most likely related to stress, fatigue and anxiety...a common cocktail of issues for young people today...they are not associated with MG per se, other than possibly the shortness of breath...but this usually emerges alongside other neuro symptoms like double vision, droopy eyelids, difficulty holding up the head, etc
it IS possible that your mestinon is affecting you...it can provoke fatigue, muscle cramps, fasciculations, even diarrhea
Customer: I do have the double vision and yes diarrheah like ive played hockey since i was 6 and all ways bery active and worked out past couple off years and during activities thats when double vision is bad and with mestinon it gave me bad stomich problems after sports only sometimes like bad diarreah and the only thing that does not mske sense to me is that if im so active and healthy/fit how do i all off a sudden out off the blue get all these crazy symptoms and since last march once this all started i completely stoped hockey and working out do to the attacks and breathing and just recently started working out again to help my self
Customer: And i forgot a symptom cery very itchy
You're a young man. You may be still growing, maturing, changing physically. Your mestinon dose may need to be adjusted, or you may need to try something else. I would suggest you see a neurologist soon. The shortness of breath alone, if related to the MG, needs to be addressed as it could be contributing to your stress level and some of these other issues.
Customer: Ok thank you if it was effecting my breathing would it show on some kind off breathing test? Not the short of breath but the shallow breathing?
SOB due to MG usually worsens as the day goes on. If you awaken with it, it is more likely to be due to something else. Either way, your breathing can be assessed by doing what are called PFTs (pulmonary function tests) which are non-specific but can point one in the direction of a neuromuscular cause as opposed to something like asthma. Your doctor or a neurologist could arrange for this study.
Customer: I had 1 in may everything showed fine
so that would suggest either a very low grade weakness from the MG...enough for you to feel it, but too little to show up on testing..or an anxiety related disorder
Customer: Well when i got tesyed it was not very bad but not its pretty bad so im seeing s doctor wensday should i get retested for breathing since it worsened??
That might be helpful to see if anything has changed. Certainly 2 normal studies would be reassuring. Have you been checked for a thymoma. The thymus gland is often enlarged with MG and it can cause some discomfort with breathing. Ask your doctor for a chest CT to rule this out.
Are you still there?
Customer: I have had a CT scan for that and it was normal i have a smsll amount off thymas gland left
Customer: And some other symptoms are very thirsty, dry nose, allot off flem in throat and i cant cough it out, doesnt feel right when swallowing,
I think the recent onset of these new symptoms warrants a careful work up. Those with MG often have other autoimmune disorders, including thyroiditis, pernicious anemia, diabetes, autoimmune hepatitis, etc. When you see your doctor on Wed ask him to work you up for other autoimmune disorders. You might also want to update the chest CT if it was not done in the past couple years. You should also request a neurology referral to make sure your MG is under control and being treated appropriately.
Customer: I got a CT scan done in the last 6 months or so, and ive had all most every test done not sure about an autoimmune test is it just a blood test and it can locate any autoimmune disease and is it a highly sensitive test and once all these symptoms started i followed up with my nerologist and the a physical exam and doesnt think these symptems are related and on wesnday im gonna request a new nerologist for 2nd opinion
It sounds like you are being very proactive and this is good. There are basic screening blood tests that can be done such as an ESR and a CRP that are usually, though not always, elevated in the presence of autoimmune disorders. If there is enough suspicion, further--more specific--tests can be done. For example, did you have a blood test to look for acetylcholine receptor antibodies (AchR) during your MG work up? There are other antibodies like this that can be looked at for the thyroid gland, for pernicious anemia, for hepatitis, for celiac disease, etc, etc.
Customer: Well when the first suspision off what they thought was MG i had a blood test for it that was negative then had an electro magnetic muscle test something like that and that was all so negative then the last thing they did was get me to exercise becore to get double vision then give me a high dose off mestinon and that corrected my eye then they diagnosed me with MG
Customer: And like i do acupunctier twice a week ive tried hypno done some massage therapy tried a herbalist and on anxiety meds but nothing seems to be helping my situation
Not exactly "hard" data....perhaps the diagnosis is incorrect...perhaps you don't need the mestinon....or have a mild case that would respond just as well to something else. I think the 2nd opinion here will be very helpful...someone to look at your case "with fresh eyes". In the meantime, hang in there, and keep asking questions. Finding a correct diagnosis and treatment plan can often take many months, especially in the milder or more unusual cases.
Customer: Ok can the breathimg be dangerous i wanna work out but dont wanna find my self not breathing
Not dangerous if your PFTs were normal. Don't forget, we have a huge reserve capacity in our lungs, so while a small oxygen deficit can be noticed, it does not pose a health risk...we can function nicely even with one lung!