• This topic has 32 replies, 16 voices, and was last updated 1 month ago by Mark.
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    • #16543
      Jodi Enders
      Keymaster

      Last week one of our members mentioned they experience watery eyes and have yet to get answers. They take Pyridostigmine, but the doctor doesn’t believe this to be the cause. However, many of us have experienced medical professionals denying MG-related symptoms when so many of us have the same secondary symptoms.

      Have you experienced watery eyes while taking Pyridostigmine? Did you ever conclude the cause with your medical team? Or did you self find something to help?

    • #16559
      Dave Hall
      Participant

      I take Pyridostigmine and I do have watery eyes, on occasion. When it happens, I just use a clean towel to dry my eyes. Usually, that is all I need to do since my watery eyes is not a full time condition.

      • #16580
        EDWARD CLAGHORN
        Participant

        I too get watery eyes from Pyridostigmine. Typically right after I get the medication and then just for a few minutes.  It is less of a problem when I use a heat compress once a day and keep my eyes clean. My medical team has said that this is a common side effect.

    • #16560
      Douglas F Young
      Participant

      When I first started taking mestinon,  I had watery eyes, runny nose and even excessive salivation. It’s gone now, but I went through some leaky times.

    • #16566
      Chiu Hou-Chang
      Participant

      my experience is some patients  had watery eyes when they start Pyridostimine but only happen at the beginning  of medication then they will adopt it, if not please tell your doctors  small dose of anticholinergics may help

    • #16569
      John Gore
      Participant

      Pyridostigmine does cause me watery eyes often, runny nose too. Currently on 3 a day but will need to increase soon as recently having some vision issues between doses.

      • #16573
        Douglas F Young
        Participant

        Instead of adding an antagonist, maybe reduce the mestinon a little?

      • #16733
        Mark
        Participant

        Vision issues would probably be the need for increasing Prednisone. I’m assuming your taking that—-The increased Mestinon

        would not help vision. Muscle in your arms and legs plus swallowing would benefit Mestinon. There is a plus and minus taking to much or little of the Mestinon. Be careful. After considerable trial and error and visits to my Neurologist an eye doctor discovered my lower eyelids dropped.  This caused the eye to tear and be pulled away from the eye. The tears never made it to the tear ducts..minor surgery will correct. Waiting for appointment.

         

        .

    • #16601
      Ronald E. Clever
      Participant

      I have been experiencing watery eyes and just thought it was pollen. Now I am gonna pay attention to when I take my mestinon and when my eyes get watery. Thanks!

      • #16724
        Jodi Enders
        Keymaster

        Our pleasure for bringing information to you, Ronald!

      • #16736
        Mark
        Participant

        One last thing. I’ve found it’s pretty much up to you to regulate everything. There is nothing set in concrete.  After so long you get the hang of what works, when it works, how much, how little and how everything reacts to your system. Trial and error. Plus after so long your ahead of the curve. Your better versed than whoever is seeing you. After 5 years I’ve seen the Doctor twice. First visit and then a nerve continuity test. Other than that I get the  assistant.  Same thing every visit. The routines never change— push pull arms legs, eyelids and follow the finger left and right. So keep records and adjust meds slightly. But always keep the med staff filled in by your Portal

         

      • #16866
        Mark
        Participant

        Let me add— my thought would be the Mestinon changes the muscle around the entire face. I’ve now noticed the face muscles dropping in general. Granted Mestinon helps restore muscle strength— but in my case it seem those muscles have a negative strength value. There is no question the lower lid is weak. This causing abnormal tearing. The minor operation is scheduled for September 28th. Lower eyelids will be drawn tight and sutured. Once and for all I’ll know if MG or just old age eyelid dropping is the cause for watery eyes.  I’m betting both. Cause and affect seems to be the answer to my question.
        Free facelift to boot.

    • #16612
      Rick Federmann
      Participant

      I took Pyridostigmine for the first couple of years after being diagnosed. My neurologist at that time (changed docs when I moved to another state) had a lot of MG experience and extensive credentials, and was great about explaining things.

      He said the neuro-stimulating action of Pyridostigmine increases secretions. Thus, I should expect runny eyes, runny nose, increased salivation, a bit of throat congestion, … , generally anything that involved secretion. And all of those things happened.

      A subtle effect that took me a while to figure out was sweating. Not sweating like after physical exertion, but almost unnoticeable perspiration that occurred all day.  Even in cool circumstances, I felt grungy at the end of the day and my shirt felt like it had been sweated in.  A shower each afternoon became a routine; a nuisance, but effective.

       

      • #16725
        Jodi Enders
        Keymaster

        Thankfully I have recently been able to stop Pyridostigmine. I live in Florida. I was changing on average three shirts a day from the sweat, and sleeping was a nightmare!

    • #16621
      Thomas Lee Clark
      Participant

      This is interesting. I have been to optho people with watery eyes, especially left eye constantly. I take no myasthenia drugs now and I have put up with it. The eye doc wants to fix a deviated septum my GP says no. Other than aggravation I use eyedrops and compresses and wipe my eyes. Whether it is related to mg is a question I have not considered. I am constantly asked on doc visits how my MG is doing? do I have any symptoms and never considered this a symptom.

    • #16622
      Douglas F Young
      Participant

      I don’t think it’s a symptom of MG, actually, but rather a side effect of of the cholinesterase inhibitor mestinon.  (Having to type out pyridostigmine is an unpleasant side effect of participating in an MG forum.)

    • #16625
      Ann Marie Hetrick
      Participant

      I do not have a problem with watery eyes I do have dry eyes but this happened after I had my cataract surgery. I have to use soothe eye drops several times a day. I do have the runny nose and increased salvation especially after I take a dose.

    • #16646
      Hilda Edwards
      Participant

      I’m on 4 x 60gm Mestinon tablets per day. During the winter and spring  watery eyes and runny nose were a real problem. I go out walking quite a lot and it was difficult  adjusting to uneven terrain and wiping your eyes and nose constantly. However now the weather has warmed up the watery eyes have improved considerably but runny nose still a nuisance.

      I also suffer from what I call sponge feet. I feel like I’m walking on foam which is rather unpleasant. When I report all these symptoms to my neurologist he says all the symptoms are age related.

      • #16652
        Douglas F Young
        Participant

        Hilda, I hope your neuro at least looked at your feet. Spongy swollen feet may be more common with age, but can be a sign of venous insufficiency,  diabetic blood vessel problems, or maybe lymphedema, especially after surgery that involves the lymph glands. I have that same spongy feeling (I wear compression stockings) but we haven’t figured out why yet. But have it checked out.

    • #16648
      Thomas Lee Clark
      Participant

      It is comical how much I relate to many of the things mentioned on these threads. The Neuro doc never pushed off anything and I was always suspect that I was overdoing all related to MG. I had and still have pain in my feet. Neuropathy drugs have not worked and walking is still painful in the bones of my feet. A doc at Cleveland Clinic said I needed therapy to learn how to walk. He had not seen my medical records prior because they became lost. After seeing them later he called and asked me to return. t my age everything is arthritis! Ha. It is intuitively obvious I do not know or understand what I do not know or think I know. I am thankful and blessed.

      • #16651
        Douglas F Young
        Participant

        I like that.  Intuitively you know now not to trust your intuition.  My frequent diagnosis is WDYEAYA: What Do You Expect at Your Age?

    • #16649
      Douglas F Young
      Participant

      Hilda, I hope your neuro at least looked at your feet. Spongy swollen feet may be more common with age, but can be a sign of venous insufficiency,  diabetic blood vessel problems, or maybe lymphedema, especially after surgery that involves the lymph glands. I have that same spongy feeling (I wear compression stockings) but we haven’t figured out why yet. But have it checked out.

      Doug

    • #16647
      Jonathan A
      Participant

      I have been only in MG remission for a little over a year ….. but you seem to get Medication side effects  .. then have to recheck & google to see what is causing you problems.   I take so far Pyridostigmine 3 times 60 mg and Cellcept/Mycophenolate 2 times  1000 mg.    Had been taking Prednisone  3 times 20 mg  … but that steroid is NASTY  … It precipitated me getting DIABETES II with its high blood sugar readings  … as well as weight gain  … and Onset Insomnia  … where it takes forever to fall asleep …..   So my Prednisone was finally killed.

      In regards to your comments  …. I do not so far have watery eyes  … just a watery nose and keep having to grab a kleenix  … even though my nose is clear and no allergies or stuffiness.

      I also find myself very sweaty  … but it is always in the morning getting up.  It takes me two or three hours to fall asleep.  Some say it was due to PREDNISONE Insomnia  that was nasty & I had to drop.  Others have said it is due inability to fall asleep due to MG bicep/shoulder muscle soreness and taking 200o mgs  daily of  Cellcept pills.  So I continue to sweat during the night …even with a ceiling fan on.

      I usually wait till after 5pm (when the sun is settling behind rooftops) to do outside yard work to avoid tiring and sweating  …. but one of the pills we have to take    … CELLCEPT ??  says those taking it for MG  need to stay out of sunlight as much as possible.

      I welcome these questions and replies from other MG patients  … as I am still trying to sort thru  … what all is happening to me.  SO IT IS WELCOME TO HEAR OTHER MG PATIENTS TALKING about their situations.   THANKS !!!!

    • #16740
      RINA NEL
      Participant

      I have written a whole story just now and then pushed the wrong button and here I am, having to start all over.

      I had a problem with watery eyes long before I was diagnosed with MG. After my Thymectomy it disappeared. I don’t have that anymore although the light sensitivity is still an issue.

      I can so relate to people with urinary disfunction. Although I am the one and only MG in my family (on both sides) I also inherited urinatytrack disfunction in droves. Since I was a small child I was the one who could never laugh without wetting myself. It was humiliating and frustrating. I am a sunny personality and I just love laughing. My husband would go looking for me when I go walkabout and he will just follow my laugh.

      So as I am sitting here reading MG forum replies, being as pooped as I am, I feel for you ouks and you also have my love.

      I am pooped because I clean my tiny kitchen, we retired in our caravan, once a week. I clean everything and wash the floor. I do this because I want to have some control of my abilities. I am soo tired but in a way I am very satisfied.

      Come Summer I am going to swim again. I did 30 to 50 lengths of the pool before my MG flared up with a vengeance. But, I want to atleast do as much as I can.

    • #16766
      Greg Goff
      Participant

      Dianagnosed with MG a few months back. Working on getting symptoms stabilized with Pryridostigmine(4 day) and Prednisone(3 day/going to 4). Still have doulble vision,droopy left eye, and lisping issues. I found that when I get stressed,tired. and overheated I experience severe watery eye conditions at night on occasions.  Still learning about MG and myself.

       

    • #16768
      Douglas F Young
      Participant

      Greg, it sounds like me my first few months. I don’t think the mestinon helped me much with the ocular stuff, but I  was on a pretty aggressive prednisone dose, about 60 mg at first, and my vision straightened out in about four months. I  wish you luck with your new journey.

      Doug

    • #16769
      Greg Goff
      Participant

      Where you able to cut back the Prednisone after 4 months? I am increasing to 40 mg next week.

    • #16772
      Douglas F Young
      Participant

      I went up to 60mg over a couple of months. Going up and down on steroids has to be gradual. Within about 4 or 5 months my double vision resolved, quite suddenly. Then we started tapering down over the next year or so to 30 then 20 where I stayed a long time, several years. The diplopia was the canary in the coal mine for me. When I went down too far the double Vision would pop up and we would bump it back up for a while.

      I found that wearing an eye patch made the double Vision more manageable, but with obvious drawbacks, including a lot of lame pirate jokes. Be careful chewing things; you may encounter some swallowing problems.

      I’m now at 10mg without the vision issues, but I also take cellcept and get Soliris infusions twice a month. The prednisone has a lot of undesirable side effects, but it really knocks down those misguided immune cells that are attacking your nerve synapses. Long term goals include reducing the prednisone as much as you can, however.

      Progress is incremental with MG. Be patient and kind to yourself. Most of us find it manageable.

      Feel free to ask questions, but few diseases seem to be as individualized as MG, so try not to measure your progress or lack of progress against what you hear from others.  We are all different.

    • #16776
      Thomas Lee Clark
      Participant

      Douglas, you have, in my opinion a great grasp on this fight. It does seem to be a very individual disease. The word ptosis surfaced for me again, I forgot the word but not the effect. The pirate patch was nerve wracking touching my face, the disc affixed to my glasses was tolerated. Convergence and depth perception took some adjustment. I learned when at a traffic light to put the car in park. I would fall asleep and relax off the brake and creep into the intersection. The horns awakened me. At a light someone behind me would toot their horn and I would snap to and drive off. Something like texting at a traffic light.
      I read in another post after a thymo taking the covid vaccine where the MG returned in full. My GP has guided me away from this as well as the flu vac. The clotting and stroke fear is daunting.

    • #16785
      Greg Goff
      Participant

      Moving on from watery eyes. I want to share initial problem that led to MG.  Several years ago I had both droopy eyes tucked by an Optomologist. Febuuary 1,2021 I had my first Pfizer Covid shot. Before my second shot I was diagnosed with Covid 19. I believe grandson had a mild case.  I had to delay second shot until I was symptom free. Second was on March 9,2021.  In March my left eye started droopy again. Went to optomologist and was diagmosed with a dry eye condition causing droopy eyes and there was no surgical relief. In April I started slurring and went to my Primary care doctor who thought I may have had a stroke. This was ruled out with an MRI and futher test were done confirming I had MG and was referred to a Neurologist. I questioned my Neurologist on probable cause from shot or Covid. He suspects the possible result of having Covid and not the shot. I just wanted to put this out there for comments since I am new here.

    • #16837
      Mike Healy
      Participant

      I have always noticed a change while taking Pyridostigmine.  Watery eyes, increased saliva, runny nose and more frequent urination.  Just an overall increase in bodily fluids it seems.  I can immediately tell when the medicine has taken effect just by my saliva increase.  It makes swallowing much easier so I have never minded the trade off.

    • #16825
      Jonathan A
      Participant

      My MYASTHENIA GRAVIS symptoms first appeared a little over two years ago on July 25. 2019.   For EIGHT LONG MONTHS,  ………      no doctor was ever able to diagnose my MG. Finally a floor nurse at ST. Joseph’s hospital recognized all my MG symptoms and got me treated.   So ever since I got my freedom and out of the five hospitals    …..     I have been googling words, tests, medicines, symptoms, and MG websites for answers to my ENDLESS questions.

      You find the symptoms of MG and all the side effects of your 14 medications,  ….. but it is still hard to say what particular “item” or pill or symptom causes what.  If you have watery eyes  …. you see what pill or symptom it matches.  So far, my biggest problems are sore biceps/shoulder joints   and a total insomnia problem  … taking forever to fall asleep.  So I continue to seek answers and ask questions, and occasionally move forward or backward the exact time I take my am/noon/pm pills  …. and see what happens  …. as some say the Pyridostigmine you take three times a day  …  is only effective 4-6 hours  …. whereas Flecainide you take every 12 hours …   they say it lasts longer.   But except for A REAL MYASTHENIA GRAVIS NEUROLOGIST on your team  …. no other doctor knows SHIT about your MG.  THEY ARE ALL CLUELESS to an UNKNOWN DISEASE>

      I just had another doctor today, a piss/poop type of doctor referral, try to get me to take an invasive test, up my butt and/or urine tract for a “look-see”, and then let them take  6-12 “biopsy tissue samples”  from my sedated helpless body.   Neither this doctor ..or his coworker … who wanted the same result  …. could understand my negative reply.   NO NO!!!! I am on blood thinners and immune suppressants for MG.   I can not afford to get a INFECTION or a BLOOD LEAK  …. and spend 5 more months in 5 more hospitals   ….  and have again 4 months of TOTAL HEARING LOSS  ….   due to antibiotic “SIDE EFFECTS” from you damaging my insides …   for no plausible reason at all   …..   or giving me an ANESTHESIA    to “depress my body movement  and   suppress my breathing/feeling” during such invasive testing lying flat on my back … and chocking on my own phlegm again.

      THEY DID NOT UNDERSTAND THAT MYASTHENIA GRAVIS ALREADY SUPPRESSES/STOPS MY BREATHING !!!!  (it was called ACUTE RESPIRATORY FAILURE … and the nurse called a CODE STRIKE  … to resuscitate my limp body back to life)

      SO GET AS MUCH INFO AS YOU CAN  …. from REPUTABLE MG PHYSICIANS   …. and stand your ground against CLUELESS DOCTORS  …. who have no idea about what MYASTHENIA GRAVIS IS … and what MEDICATIONS need to be avoided at all costs.

    • #16844
      Jane DeLisle
      Participant

      My daughter has MG, but before getting that diagnosis, she was diagnosed with Dysautonomia (dysregulation of the autonomic nervous system).  For those not familiar with the ANS, it uses 2 main neurotransmitters – epinephrine (sympathetic) and acetylcholine (parasympathetic).  The same acetylcholine that is used by striated muscles in MG.  The difference is that striated muscles in MG uses nicotinic acetylcholine receptors while the Parasympathetic Nervous System uses muscarinic acetylcholine receptors.  Mestinon boosts the effects of acetylcholine on any acetylcholine receptors, so it can boost parasympathetic reactions (like tear production, urinary, gastrointestinal, and many other autonomic functions) as well as striated muscle functions.  Acetylcholine is even used in the ear!

      My daughter’s gastroparesis problems improved dramatically the moment she started taking Mestinon for her MG.

      The really strange thing is, so far, I haven’t witnessed any neurologists exhibit a deep knowledge of the Autonomic Nervous System, despite having the word “Nervous” in it.  Too frequently, they seem to want to push ANS symptoms onto some other body part specialist.  I believe current acetylcholine receptor antibody tests only test for antibodies to nicotinic receptors.  CellTrend in Germany has a specific test developed for muscarinic antibodies but it appears not even Mayo here has such a test.

    • #16851
      Douglas F Young
      Participant

      Jane, such a well thought out analysis. You have a remarkable grasp on the essentials of MG. That’s why anti-cholinergics are bad for MG patients.  Drugs such as scopolamine for motion sickness, in this case, cause a decrease in available acetylcholine, which inhibits autonomic nerve activity, causing dry mouth, urine retention, sometimes constipation, all related to muscatinic synapse mediated autonomic nerve stimulation. Increasing the available acetylcholine with pyridostigmine will stimulate autonomic (muscatinic) activities for patients who need it. You might have thought of a potential benefit for people other than your daughter who share her syndrome.

      I too am very interested in the nuts and bolts of my disease, and I  am disappointed that neurologists don’t really want to talk about MG on this level.

      Doug

    • #16852
      Douglas F Young
      Participant

      Also, there would seem to be no benefit for MG diagnosis in testing for antibodies to muscatinic receptors, since the nicotinic AChR receptors are the tissues damaged by the AChR antibodies. That’s assuming of course that the antibodies are that finely tuned.

      For other diseases like ANS I could see clear benefit.

       

    • #16853
      Douglas F Young
      Participant

      Also, there would seem to be no benefit for MG diagnosis in testing for antibodies to muscatinic receptors, since the nicotinic AChR receptors are the tissues damaged by the AChR antibodies. That’s assuming of course that the antibodies are that finely tuned.

      For other diseases like ANS I could see clear benefit.

      PS. I’d like to hear your thoughts on tinkering with immunosuppressants before my covid booster shot. Two Pfizer vaccinations left me with no apparent antibodies, and I’d like to try something to get some benefit from the next one. Doctors do not want to discuss this.

      Doug

       

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