[korbi_doc]

Mods, I'm copying this from my thread in "communities" Hope that is ok!

Hi all, a little history, am a retired veterinarian (goin' on 3 yrs), have been in Tn for that am't of time, & finally have found what has been stalking me for a very long time....fatigue syndrome never quite explained it all, but when I moved here from NJ in '06 I literally fell apart & landed in the ER twice with an excruciating headache & prostration; after morphine & sev'l weeks in bed, managed to get back up & resume living....however, no dx ever found for that one & proceeded to get weaker & weaker & developed severe exertional dypsnea (difficult, shortness of breath, one Dr claimed I was in heart failure, not so).... there is still no way to associate that illness (possibly viral?) with my eventual dx of MG (2wks ago); confirmed with a decremental EMG...AB results pending; because of the dypsnea time was spent on cardiac & pulmonary testing of which all was normal, (repeated the scenario that you all know too well for past 2 yrs)... now, in addition to the weakness & breathing problems, my jaws ache & feel weak, but I did not present with the classical facial & ocular signs which I'm sure impeded the final neuro evaluation....

After searching this & other forums, it is evident that symptomology varies greatly from person to person, but also from time to time in each of us with remissions...haven't yet been able to assess the effects of pyridostigmine br...taking the 180mg timespan twice a day, may be helping some.....(for some unknown reason, earlier, the administration of a long-acting steroid injection made me considerably worse within 48 hrs)....can only hope that something will eventually tone this down or result in a remission....I sure would give anything to get "back in that saddle", 3 horses & I can't ride yet, or work with my 2 dogs..(dobermans) the elder is an agility champ, but I cannot walk long enough to train the young one....

Sorry for the long post...takes much explanation, & I do realize that there are many of you out there who are in worse straits than I & a lot younger....I'm just trying hard not to give up....never was a quitter..

Dottie

[bluesky]

Hi Dottie,

I'm new to the forum too. I haven't been officially diagnosed yet, although I did test positive for the antibodies. I wanted to say that I also have terrible fatigue and trouble breathing as my main symptoms. Of course, silly me, I thought my trouble breathing was because I was so exhausted. Anyway, I didn't have the typical drooping eye until 7 years into this mess.

I have to say - I'm just amazed that you were diagnosed. Whichever doctor it was who gave you the emg is one smart cookie.

Again, I'm undiagnosed, but for what it's worth the mestinon helped enormously with the breathing problems for me and did nothing much for the fatigue.

I'm sure there are lots of people who will come along and be of much greater help to you. But I just wanted to say that, you're right, we're all different as far as symptoms go but it sounds like you and I are similar.

Ally

[ras1256]

Hi Dottie,

I'm sorry you're in the position of having to join the forums, but glad to have you here!

I was dx with generalised MG in 2004 but have had it at least since 1996.
I also do not have the droopy eye, but I also have another as yet undx'd condition causing other symptoms. Prepare yourself for neuro's questioning the dx of MG without the droopy eye!

I have one big concern from your post. The 180 timespan was designed to give some coverage overnight. The time release action is too sporadic for it to be the formula of choice. I really feel you should call your doc and see about getting a Rx for the regular Pyridostigmine. I have Timespan now and have had it with my last flare as well - both times being cautioned by my neuros (2 different ones) that it is ONLY for night time use.

With the regular Rx and proper dose for you, you should be able to feel a difference within one dose. I get dramatic relief from 60 mg within 20 minutes when I am very weak or having breathing difficulty. At times I have to take 60mg every 2.5 to 3 hrs., other times I can go 6 hrs before another dose. The symptoms & severity can wax & wane from hour to hour and day to day, so it's a constant monitoring thing with MG.

I have a little test I give myself when I'm not sure which condition is causing problems. If I can't stand up from a chair without using my hands to push me up, I know it's my MG. 20 minutes or so after taking the Mestinon, I can. I do this if it hasn't been very long since the last dose. My legs are heavily affected with my MG so this test works for me. You may need a different "test" depending on which muscles are worst for you. One person had posted once that he lies on the floor and tries to lift a leg from that position.

Taking too much can cause cholinegeric crises - the same symptoms as not enough- so most newbies aren't given the option I have of self dosing. You have to get more familiar with YOUR signs and symptoms before that is safe.

The best advise I can give you is to make sure you have a good neuro that stays current with MG - they all have sub specialties so some are more interested in other afflictions and you may not get the best, most up to date information and care from someone more interested in a different area (vascular neurology, for instance). That, and the most important piece of your plan is management of your activities.

When I read literature that said myasthenics can lead nearly normal lives, I was considering my old normal - up at 4:30, do aerobics, a load of laundry, get ready for work, work 10-12 hours, go home and make dinner, clean the kitchen....So I figured up at 6:00, skip the aerobics, work 8 hrs, let hubby make dinner while I cleaned up, etc. - WRONG. A normal life means not in the hospital or wheel chair, but NOT that you will be able to carry on as you did before. Until you are "under control" you'll have to make SERIOUS moderations to your routine, planning to do your necessary activities while your meds are at their peak. Once under control, you can get back to a more "normal" routine, always keeping in mind that there is a cummulative effect - you may be able to pull off doing a lot one day or for a week, but it will affect you later.

Best of luck with finalizing your dx, making sure you have the best neuro for your situation, and finding the best treatment plan. Just be really careful for now! You'll find lots of good information and support at this site - we have some amazing people here!

We're all in this together!

Originally Posted by korbi_doc

Mods, I'm copying this from my thread in "communities" Hope that is ok!

Hi all, a little history, am a retired veterinarian (goin' on 3 yrs), have been in Tn for that am't of time, & finally have found what has been stalking me for a very long time....fatigue syndrome never quite explained it all, but when I moved here from NJ in '06 I literally fell apart & landed in the ER twice with an excruciating headache & prostration; after morphine & sev'l weeks in bed, managed to get back up & resume living....however, no dx ever found for that one & proceeded to get weaker & weaker & developed severe exertional dypsnea (difficult, shortness of breath, one Dr claimed I was in heart failure, not so).... there is still no way to associate that illness (possibly viral?) with my eventual dx of MG (2wks ago); confirmed with a decremental EMG...AB results pending; because of the dypsnea time was spent on cardiac & pulmonary testing of which all was normal, (repeated the scenario that you all know too well for past 2 yrs)... now, in addition to the weakness & breathing problems, my jaws ache & feel weak, but I did not present with the classical facial & ocular signs which I'm sure impeded the final neuro evaluation....

After searching this & other forums, it is evident that symptomology varies greatly from person to person, but also from time to time in each of us with remissions...haven't yet been able to assess the effects of pyridostigmine br...taking the 180mg timespan twice a day, may be helping some.....(for some unknown reason, earlier, the administration of a long-acting steroid injection made me considerably worse within 48 hrs)....can only hope that something will eventually tone this down or result in a remission....I sure would give anything to get "back in that saddle", 3 horses & I can't ride yet, or work with my 2 dogs..(dobermans) the elder is an agility champ, but I cannot walk long enough to train the young one....

Sorry for the long post...takes much explanation, & I do realize that there are many of you out there who are in worse straits than I & a lot younger....I'm just trying hard not to give up....never was a quitter..

Dottie

[korbi_doc]

Hi Ally, boy, you do sound just like me with those symptoms...exertional dypsnea is no fun & becomes very difficult to deal with, as if the exhaustion is not bad enough....now that I look back to my life when in the veterinary hospital, I realize that there has always been somewhat of a problem with extreme fatigue....rode horses & showed them for many yrs, & the last few yrs, many of my friends wondered why I couldn't keep up, esp with my english horse in long tough classes...I blamed it on our marathon days in the office doing surgeries both before & after the horse shows, thought I was just getting older & too tired....lol....hindsight is 20:20....

About the neuro doc, he told me he didn't know, since it wasn't his area of expertise (oncology, neuro), even tho the EMG was decremental, so he recommended one of his colleagues, who is experienced with it...would've sent me to anyone of my choice, how's that for a good guy?? I don't read that about many on these forums....hope you get your dx soon, but does seem conclusive already...

ras, you can be assured I'll be careful with meds, it's in my modus operandi ....the 60 mg tabs did nothing for me from the 1st doc, & his colleague stated it was a very lo dose....I've not read that it's a nighttime drug, but I need help to manage my days, so take one very early am & do feel the difference...the 2nd dose I take in late pm...seems to work for me, I knew I needed that 2nd dose when late afternoon set upon me.....

&, you are so right 'bout managing your activities, & I've realized, as have you, we can't come all the way back....just driving over an hour to the neurosciences dept & back, leaves me quite exhausted for sev'l days, but I am the type to push that envelope as far as I can...in yrs past, running the vet hospital, office hrs, surgery, dealing with clients & keeping up with new information, etc, took up all my days & sev'l nights a week...my goal right now is to get back on one of my horses this summer & ride..think I'll send him/her to a trainer 1st for a few wks to get him ready...I also have a large fishroom with 6 big tanks to care for & I'm sad to say I've fallen down on that one, just can't do it the way it needs doing....& then there's the dogs....oh well...C'est la vie.....

Thanks both for your comments, & hope you are able to "keep in control"...I'm also interested in other meds for this disease, imuran, tho nasty drug may be useful, what happened to Monarsen? nothing since '06...prednisone is evidently good for some, but put me in the toilet immediately...no one can answer why....

Dottie

[nemsmom]

Originally Posted by korbi_doc

Hi Ally, boy, you do sound just like me with those symptoms...exertional dypsnea is no fun & becomes very difficult to deal with, as if the exhaustion is not bad enough....now that I look back to my life when in the veterinary hospital, I realize that there has always been somewhat of a problem with extreme fatigue....rode horses & showed them for many yrs, & the last few yrs, many of my friends wondered why I couldn't keep up, esp with my english horse in long tough classes...I blamed it on our marathon days in the office doing surgeries both before & after the horse shows, thought I was just getting older & too tired....lol....hindsight is 20:20....

About the neuro doc, he told me he didn't know, since it wasn't his area of expertise (oncology, neuro), even tho the EMG was decremental, so he recommended one of his colleagues, who is experienced with it...would've sent me to anyone of my choice, how's that for a good guy?? I don't read that about many on these forums....hope you get your dx soon, but does seem conclusive already...

ras, you can be assured I'll be careful with meds, it's in my modus operandi ....the 60 mg tabs did nothing for me from the 1st doc, & his colleague stated it was a very lo dose....I've not read that it's a nighttime drug, but I need help to manage my days, so take one very early am & do feel the difference...the 2nd dose I take in late pm...seems to work for me, I knew I needed that 2nd dose when late afternoon set upon me.....

&, you are so right 'bout managing your activities, & I've realized, as have you, we can't come all the way back....just driving over an hour to the neurosciences dept & back, leaves me quite exhausted for sev'l days, but I am the type to push that envelope as far as I can...in yrs past, running the vet hospital, office hrs, surgery, dealing with clients & keeping up with new information, etc, took up all my days & sev'l nights a week...my goal right now is to get back on one of my horses this summer & ride..think I'll send him/her to a trainer 1st for a few wks to get him ready...I also have a large fishroom with 6 big tanks to care for & I'm sad to say I've fallen down on that one, just can't do it the way it needs doing....& then there's the dogs....oh well...C'est la vie.....

Thanks both for your comments, & hope you are able to "keep in control"...I'm also interested in other meds for this disease, imuran, tho nasty drug may be useful, what happened to Monarsen? nothing since '06...prednisone is evidently good for some, but put me in the toilet immediately...no one can answer why....

Dottie

Dottie,

I haven't been diagnosed as to what my weak spells are and don't really have any good test results to probe anything yet I just wanted to say that I have the same reaction to steroids.

The first time they gave me IV steroids (extremely high dose) for MS I did alright but the second time I ended up taking an ambulance to the hospital and staying for five days. I wish they knew why for either one of us.

I hope you're doing well.

Kristie

[SixMile]

Thanks for this write up and all the ones above. I probably had MG for years thinking I was just getting old. I was not as stable as I should be and my breathing was getting to be more of a problem each year. The doctors kept giving me EKGs and chest X-rays and they always came out good.

One morning I woke up with double vision and finally could not hold one eye open. Then the problem switched to the other eye. Went to the Eye Foundation in Birmingham, AL, they tested and concluded MG and gave me Mestinon (Pyridostigmine) 40mg three times a day and it barely worked; then he added Prednisone (5mg). (Pyridostigmine) and it worked very well.

The reason I am writing, I seem to have lower track stomach problems which causes my intestines to make a LOT of noise. Then my legs cramp a lot. My breathing is still slowly getting worse and I get tired and sleepy. DO YOU HAVE THESE SAME PROBLEMS? IF SO, WHAT DID YOU DO AS FAR AS INCREASING OR DECREASING MEDICINES ? I take my medicine with meals.

I am now with a local Neuro who handles MG. My doctor says SLOW and steady and that all cases are different.

SixMile

[ras1256]

Originally Posted by korbi_doc

Hi Ally, boy, you do sound just like me with those symptoms...exertional dypsnea is no fun & becomes very difficult to deal with, as if the exhaustion is not bad enough....now that I look back to my life when in the veterinary hospital, I realize that there has always been somewhat of a problem with extreme fatigue....rode horses & showed them for many yrs, & the last few yrs, many of my friends wondered why I couldn't keep up, esp with my english horse in long tough classes...I blamed it on our marathon days in the office doing surgeries both before & after the horse shows, thought I was just getting older & too tired....lol....hindsight is 20:20....

About the neuro doc, he told me he didn't know, since it wasn't his area of expertise (oncology, neuro), even tho the EMG was decremental, so he recommended one of his colleagues, who is experienced with it...would've sent me to anyone of my choice, how's that for a good guy?? I don't read that about many on these forums....hope you get your dx soon, but does seem conclusive already...

ras, you can be assured I'll be careful with meds, it's in my modus operandi ....the 60 mg tabs did nothing for me from the 1st doc, & his colleague stated it was a very lo dose....I've not read that it's a nighttime drug, but I need help to manage my days, so take one very early am & do feel the difference...the 2nd dose I take in late pm...seems to work for me, I knew I needed that 2nd dose when late afternoon set upon me.....

&, you are so right 'bout managing your activities, & I've realized, as have you, we can't come all the way back....just driving over an hour to the neurosciences dept & back, leaves me quite exhausted for sev'l days, but I am the type to push that envelope as far as I can...in yrs past, running the vet hospital, office hrs, surgery, dealing with clients & keeping up with new information, etc, took up all my days & sev'l nights a week...my goal right now is to get back on one of my horses this summer & ride..think I'll send him/her to a trainer 1st for a few wks to get him ready...I also have a large fishroom with 6 big tanks to care for & I'm sad to say I've fallen down on that one, just can't do it the way it needs doing....& then there's the dogs....oh well...C'est la vie.....

Thanks both for your comments, & hope you are able to "keep in control"...I'm also interested in other meds for this disease, imuran, tho nasty drug may be useful, what happened to Monarsen? nothing since '06...prednisone is evidently good for some, but put me in the toilet immediately...no one can answer why....

Dottie

Dottie -
I kinda figured you for an overachiever type. It seems to be we who end up with MG, believe it or not. It wasn't the meds so much that I was cautioning about - it's how much you do. Being an overachiever, we tend to cut down even 50% of what we did, and in the beginning that's still too much.

I'm impressed with your doc. There aren't many, as you noted, that will admit they're not the best to handle you. The one who gave me my 2nd dx explained that to me as she passed me off to someone more qualified. Now those are awesome docs! We obviously need more of them in the world!

Prednisone, I hear, can make you worse before it makes you better, which happened with me the first time, too as I recall. I was on Imuran for a while after my thymectomy and I guess it worked - just not dramatic and sudden so it was hard to tell if it was my thymectomy or the Imuran or both. It takes quite a while to build up to theraputic levels.

Erin has great luck with IVIG, and there is plasmapherisis but it's very expensive and somewhat invasive so they usually reserve that for stabilizing rather than ongoing treatment.

Best of luck to you. Let us know how you like the new neuro.

Off subject, but may I request some suggestions for training my 6 mo. old choc lab. I was just getting into training sessions with her when I had an aneurysm coiled and that has apparently caused me to relapse. She was very easy to leash train, sit, lay down - most things, but she has this nipping and wanting to play tug-o-war with EVERYTHING and sometimes ends up getting my skin when going for a sleeve. Can't have that - my granddaughter is too small ( 9 yrs old) to be able to overpower this pup, so we are training the granddaughter as well!

Talk to you soon.

[ras1256]

Originally Posted by SixMile

Thanks for this write up and all the ones above. I probably had MG for years thinking I was just getting old. I was not as stable as I should be and my breathing was getting to be more of a problem each year. The doctors kept giving me EKGs and chest X-rays and they always came out good.

One morning I woke up with double vision and finally could not hold one eye open. Then the problem switched to the other eye. Went to the Eye Foundation in Birmingham, AL, they tested and concluded MG and gave me Mestinon (Pyridostigmine) 40mg three times a day and it barely worked; then he added Prednisone (5mg). (Pyridostigmine) and it worked very well.

The reason I am writing, I seem to have lower track stomach problems which causes my intestines to make a LOT of noise. Then my legs cramp a lot. My breathing is still slowly getting worse and I get tired and sleepy. DO YOU HAVE THESE SAME PROBLEMS? IF SO, WHAT DID YOU DO AS FAR AS INCREASING OR DECREASING MEDICINES ? I take my medicine with meals.

I am now with a local Neuro who handles MG. My doctor says SLOW and steady and that all cases are different.

SixMile

Sixmile -
What you're describing almost sounds like too much Mestinon (stomach and muscle cramping) and too much can cause the same symptoms (breathing?) as not enough. This is called cholinegeric crisis and has to be treated differently than myasthenic crisis although they look identical to doctors. It's best not to get to that point in the first place (DUH). Do you notice increased sweating, too?

Have you seen your new neuro yet? I think it would be a good idea to call either them or your other doc, let them know what you have noticed while on both meds and see if they think you should cut down the Mestinon.

[erinhermes]

I also had horrible cramping in my legs - turns out I was waaaay anemic - my ferritin level was 10 - and needed a blood transfusion.....after that I felt much better!

Please make sure to take your Mestinon after you have something in your stomach, as it can cause pretty awful stomach problems - I learned tha the hard way.....

It can and will get better! You have to be your own advocate........also leanred that the hard way!

My thoughts and prayers are with you!
Erin

Originally Posted by SixMile

Thanks for this write up and all the ones above. I probably had MG for years thinking I was just getting old. I was not as stable as I should be and my breathing was getting to be more of a problem each year. The doctors kept giving me EKGs and chest X-rays and they always came out good.

One morning I woke up with double vision and finally could not hold one eye open. Then the problem switched to the other eye. Went to the Eye Foundation in Birmingham, AL, they tested and concluded MG and gave me Mestinon (Pyridostigmine) 40mg three times a day and it barely worked; then he added Prednisone (5mg). (Pyridostigmine) and it worked very well.

The reason I am writing, I seem to have lower track stomach problems which causes my intestines to make a LOT of noise. Then my legs cramp a lot. My breathing is still slowly getting worse and I get tired and sleepy. DO YOU HAVE THESE SAME PROBLEMS? IF SO, WHAT DID YOU DO AS FAR AS INCREASING OR DECREASING MEDICINES ? I take my medicine with meals.

I am now with a local Neuro who handles MG. My doctor says SLOW and steady and that all cases are different.

SixMile

[korbi_doc]

Becky, yes it's nice to have understanding docs, not everyone's so lucky...hope that changes in the future....it will be interesting to hear what my new doc has in mind for more drugs or rxs.....it's early with dx being new, next app't is the 21st, so I'll be prepared to discuss this more..so far the Mestinon ts seems to be helping...but I'm aware of the probabilities...

Sounds like you have that puppy situation in hand if you even realize it could develop into a problem if ignored...at 6 mos, she is doing what comes naturally, but you or someone should get her started into obedience training...that will generally help with the excess energy that needs to be pointed in the right direction...youngsters can be trying, esp when you don't have the energy to work with her...there may be someone around who can help you, get some books to help you with the mechanics...where is the dog whisperer when you need him????? I empathize totally..mine has just turned 2 & is still over "energized", dobes often take 3 yrs to "contain" all that energy, the older gal just looks on with total disgust!! lol....

Kristie, keep pushing to get a dx, we have to be our own advocates...hope you are getting better...hang in there...

Sixmile, listen to Becky, there are many here who have experience with meds....I'm just starting & am keeping fingers crossed that I don't run into too many adverse reactions....but with my luck, lol...hang in there!

Erin, guess I should listen too.....didn't take it with food...will now....gonna take awhile for me to sort it out....I read from your other post, you are feeling down...that is so understandable...guess it comes with the territory...do hang in there & hope you feel better...this is a difficult side effect of this disease...& don't we all miss our former lives, you nailed it....I've been feeling that way so much & can't explain it to family & friends...I so miss my vet hospital & my work..it hurts every day!!

Dottie