In process of getting diagnosed..

[rumpled]

I had an EMG and it was "highly suggestive" of MG - and other motor neuron things as well now that I read up (two members of my family have or had ALS so not so happy about this).

Had some bloodwork but not much. Going for a chest MRI on July 9th. I had an xray recently before some surgery and it was clear so he wanted something more detailed. Neuro only ordered seds and acetlcholine blocking antibodies. I don't know if that is enough and I think my sed is normal.

I seem to have very weak arms (both shoulders are frozen which really makes things hard) and legs. Eyes.. well, I have had eye issues with seeing double when I am tired for over 20 years so I am not sure if it is related or my Cushing's gave me a pass for a long time. I am an endocrine nightmare so having another thing -and another autoimmune thing... I am bummed out. Hard to say as this seems to present differently with everyone but... I had to guess what I had and ask for the EMG!

[redtail]

Hi Rumpled

Gosh with all you have to cope with at the moment I hope you dont have mg.

Ive been diagnosed with mg for almost 5 years, and it still manages to surprise me sometimes.
Hope you find out soon you dont have it.
Take care :hug:

[loisba]

Rumpled, it's very common to have more than one autoimmune thing going on at the same time. Like redtail, I hope you don't have MG, but it's better to get a definite diagnosis and treatment, than to be in diagnostic limbo. I've coped with the MG since the mid-70's. It's no picnic, but there are worse things out there.
Hugs,

[rumpled]

Thank you.
I just had a hysterectomy a few months ago. Before that I had my adrenals removed to cure my Cushing's disease. I have been unable to work since that surgery as I never recovered any stamina. I have also had pituitary surgery, thyroid removed (in two surgeries, as different nodules on the right and left) and various other surgeries. My neuro says that I am not an appointment but a fellowship.
Does everyone have a thymectomy? How do you know if you have MG as opposed to another motor neuron something?
Is everyone so tired? Nap all the time? In pain?

[rumpled]

Well, my blood tests all came back in normal ranges but I don't have exactly what they are. My MRI showed that I have thymus tissue but did not seem to have a thymoma but it was done without contrast. I am also skeptical of imaging as well, it has always been wrong for me since it has missed stuff before like a pituitary tumor for 12 years as well as telling my my adreneals were a-ok both before and after they were removed when pathology said they were twice the size as normal... not to mention my thyroid...
But despite the normal tests, the doc wants to say I have MG. Do I need to go for another opinion?

[redtail]

Aww Rumpled,
sorry I havnt got back to this site sooner, I forget where Ive posted messages!! Sounds like you are going through a fair bit at the moment, I whish I had some answers for you. If you dont feel comfortable with what the doctor has told you, (I now trust my instincts alot) I would go for a second opoion, after all whats the worst that could happen, you could find out what you may not want to hear, but will be able to start treatment. Is this doctor saying that he wants to start you on meds?
I didnt have a thymoma, and have had a thymectomy, it seems that mg is so very different for each person.
Yes I get very tired, but my neuro says thats not the mg!! I also have alot of arm and leg pain again, not apparently related to mg, so I just put up with it and go and rest when its bad.
If I havnt answered some questions you want answered feel free to ask, Im a bit brain foggy today.

Hope this helps a little
take care
redtail

[rumpled]

Actually I like the doc... only I have never been diagnosed with anything so easily so maybe that is it! I don't think he has treated many with MG as I had to tell him the extra tests... so that tells me unsure. I just don't like the family history of ALS and me not fitting in with MG so well as my eyes are fine. I just have a lot of questions. If I had had one blood test that showed it, well... but nothing.
I see him the end of the month to discuss meds and the thymectomy which I don't think he wants to do.

[rumpled]

The doc says he thinks I have MG despite the bloodwork. He is giving me a trial of mestinon. In addition, he wants me to see other doctors in NYC that are specialists that are a motor neuron group at Columbia as well as a rheumatologist at Mt Sinai. He says I am a bit complex since my eyes seem to be ok but my arms and legs are weak. I am not keen on the steroids and he knows it and so did not push it despite my husband pushing for me to take more. I lived with Cushing's for at least 12 years and it destroyed my muscles and I blame it for being in the sorry shape I am in now. So at least he wants to send me off to better docs. I am seeing another local doc today to see what he thinks.

[redtail]

Hey Rumpled
Good to hear you are getting somewhere. Have you started the mestinon, are they working? How much and how often are you taking them(hope you dont mind me asking) Hope all these visits to doctors helps,
take care
redtail

[rumpled]

I was given 60mg of mestinon. I can take them every 4 hours but I only have 30 pills to try. It did not really do much. I took it for the first time yesterday. It knocked me out. The other doc basically took 15 minutes to tell me he could not help me at all - something about being too complex. LOL. I guess I have to find some center that will take me on but I am afraid that it will be another 12 year battle like it was for my Cushing's. I don't know if I have that energy in me. I barely had it last time. Why can't I have something easy like a cold? Sorry for whining...
I will try more mestinon today. See what happens.

[redtail]

Oh Rumpled you whine away(although I dont think you are) I think it helps,
How did the mestinon knock you out? I know Ive had conversations with other people and doctors, and it should help your MG, and it should last for up to at least 3 hours. I know about the to complex, Im sure my doctor just groans when he sees me comming, I always leave without telling him the whole list of complaints!! I agree Id just like a common cold, or even just one thing wrong with me instead of several, it just aint fair is it?!?!?!? I hope you can find some help somewhere, someone who not only cares but can help as well.
You take care, and if you need to vent please do, it helps to get it out, and we all understand.

[rumpled]

I am not sure how mestinon is supposed to feel but how is feels for me is that I get a very funny feeling in my mouth. And my nose runs. I purposely try to use my arms as they are the weakest but since they are a bit frozen in the shoulders, it does not seem to have an effect. And the last two nights, I have slept solid and snored a lot (my husband complained!). My arms feel more heavy instead of better and with sleeping in such an awkward way, my neck hurts too. I don't know what I expected but... it just did not seem to make things work. I was trying hard to mash potatoes and stuff to push myself and I just got more tired. Hard to judge if it helped or not but I think mostly not.
Yeah my doc groans when he sees me too. :) He knows me so well that he does so literally!

[redtail]

Hmmmm, I know that when I take my mestinon, my eyes open up, and I get more usage(is that a correct word??) out of my arms and legs, ie if before I take my mestinon my arms arnt working, I may find it difficult to lift my legs or wash the dishes, after taking mestinon its easier, not 100%, but not as much of an effort as before. Hope this little explination helps you know how mestinon helps me. take care
ps just did a quick google and a runny nose can be a side affect of mestinon, which thankfully I cant say Ive had, just all the other unpleasant ones!!

[loisba]

My Mestinon is basically what keeps me going. If I forget to take a pill, I notice the fatigue when I'm about an hour over-due. Often the first thing I will notice if I am late is the feeling of a weight on my chest, from the fatigue of the breathing muscles. Then I know I've got to take a pill. Like right now, I'm late for my bed-time pill, and It is rather a strain breathing. Basically what I notice when I take the Mestinon is more a lack of fatigue than a positive feeling of being able to do more, more strength in arms, etc. Does that make sense? Just a the fatigue tends to creep up insiduously, until I realize I've forgotten a pill, so the effect of the Mestinon kind of "creeps" up, keeping me from feeling the fatigue.
:hug:

[ibeeanurse]

Do those that have to take a bedtime dose of Mestinon have to also take a snack with it to keep it from hurting your stomach?

[redtail]

When I use to take it,(mestinon timespan) I took it with a glass of milk,once I knew how it upset my stomach and intestines, but it still made me quite ill, I use to wake up every morning and vomit, not the most pleasant experience, but it helped my MG so much I suppose it was worth it

[rumpled]

I take it with food or milk as it upsets my stomach as well. Unfortunately with no adrenals, vomiting is a bad situiation with me and can lead to a medical emergency so trying to avoid it.

Since I have tried the mestinon I look like a raccoon with dark circles under my eyes.
I think I am going to report that it is not making a difference. I wonder if that means he will try me on something else. I don't see the other doc until the end of September.
Question for Lois or others - do you have fatigue normally and the med takes it away somewhat? I have wasted muscles and then when I do anything, I just go downhill from there. The mestinon does not allow me to recover so it sounds like it is not working for me. My face and breathing are so far fine. Arms and legs get weak with use and then do not recover for days.

[loisba]

I usually try to take my Mestinon with food, even the bedtime dose, but I've found that I've gotten so used to it, that I can get away with taking it without eating anything.
:hug:

[redtail]

Hi Lois, how long have you been taking mestinon for?? Ive been on it for nearly 5 years, as well as prednisilone and azathioprine, and I still have my occasional "toxic" times, every few months I have a few days of nausea, and sometimes vomiting if I dont start the probanthane quick enough, and running to the toilet very quickly. I try and look on the bright side and hope one day I may be off a few medications!!
Rumpled, I do hope your doctors come up with an answer. Yes my medication (mestinon) does help with my fatigued muscles, although it doesnt bring them back to "normal", just to mg normal. I am finding typing hard at the moment, so Ive just taken a mestinon, and hopefully my fingers wont be so slow soon, hope this helps.

[lilviking]

I've taken mestinon for a few years now, but have not suffered from nausea except when taking timespan. Still, I nearly always take it with food just in case.

The mestinon is supposed to result in decreased muscle fatigue. It has never seemed to helped 100%. I am more able to function most of the time as long as I take it. Of course I still have to use what energy I have to explain that even though my muscles are tired I am not sleepy.

[rumpled]

I see the specialist at the end of this month. He will run another EMG and we will see how it goes. In the meantime, I have lost much of the use of my left arm too so it makes it so hard to do a lot...

[Maxwell'sMom]

Well, Mestinon causes me terrible diarrhea, and makes me nauseated. but I continue to take it. I was told that if you are lactose intolerant,you'll have these kinds of problems with it. ( It has Lactose in each pill) I take special meds to help control it. But not the script I was given to help with the diarrhea is causing me stomach problems. Just a vicious circle I guess.
What's Cyclic Cushings? I'm curious, as I have Cyclic vomiting. It's horrible. I just got over a bought last week, thankfully I didn't have to go to the hospital or anything. When I was first going to the doctor, they thought Cushings cause my cortisol was so high, but now it's all over the place.
Love Lizzie

[rumpled]

Cyclical Cushing's is where you have high cortisol readings sometimes, but normal at others. So the tumor cycles in hours or days or weeks. It is extremely hard to diagnose as you will have all the symptoms of Cushing's but endiots will look at the abnormal test and say oooh and then look at the normal test and say oh! the abnormal test must have been lab error as they are blind to your symptoms that are freaking flashing in front of their eyes. So as your life is crumbling away for a decade or more, you cannot get any help as some of your tests are normal. Do I sound bitter? Cortisol should never be high and a normal test should not "wipe" out an abnormal test if you have symptoms or even if you do not as I was thin for many years. Eventually I came within 6lbs of doubling my body weight ("well, you must be a overeater in denial then, let's put you on anti-depressants") and now I am pretty much permanently disabled from the effects of the cortisol and being panhypopituitary as the stupid docs ignored all the signs as my testing was inconsistent. So I was not perfect testing, they just wanted me to go away and get sicker and I sure did almost to the point of dying yet my tests still were only mild at best. Do they ever think that it is the tests that are a bit off? No. I suppressed on the dexamethosone test ergo I must not have Cushing's. That pathology cannot be right.

Cyclical vomiting... cortisol all over the place? I have friends that vary from cortisol too high to too low and go from Cushing's to Addison's so that may account for the vomiting. It has happened. You need a good doc and a lot of testing to catch it. 24 hour urine tests, 8am and midnight serums, saliva tests, 10 hour urines (that is how they figured I cycled at night, never slept and that concurred with my sleep study).

I am not lactose intolerant that I know... I have to drink tons of milk now that I have a PTH problem (joy). If that happens... man... I am hoping they can treat this MG thing as I need my arms back. Now I am starting to fall. This is not fun.

[Maxwell'sMom]

Why can't things be easy??
My cortisol levels have been too high, too low, and non existant. But when I go and get retested it's fine. I've had the 24hr urine done, and all was fine. Except I was a bit dehydrated. At the moment, I've been nauseated, for well...forever. Seriously, it has been months that I've been battling nausea. But I've had other things going on. For example, Cellcept, caused my kidney's to start to shut down, so I had to go off of that. Kidney's were inflamed. I do have and endocrinologist, and she is very careful check everything, all the time. But the last couple of times, cortisol, has been perfect. The 24 hr urine was done in 2004, before the mg diagnosis.
Literally in two weeks, I have to have a colonoscopy, and (what is it called when they do it down the throat? can't think:eek:rolleyes:) Anyways, they're doing them both on the same day:eek:. Said it would be easier on my body..
I hope they're right. They want to know why I keep having these cyclic vomiting episodes. I guess they're worried about me having an auto immune intestinal disease, like microbiotic ulcerated colistic (sp?)
Thank you, I'll have to ask when I go back to my endo in november.
I already have 3 rare off the wall medical problems, what one more..:cool
I'm a narcoleptic, Myasthenic, and I've had Dysautonomia for years.
I hate my health
love Lizzie

[Bluddie]

Hi,
My names Adam and i was born with MG which kinda sucks. But still i have never met anyone else who has it no matter how hard i try. I am almost 20 now and am sufferening from depression also, and the 2 together are quite dominating in my life at the moment. Well i just wanted to say hello and perhaps i will be able to give and recieve information and adivce that could benefit us both.

Thanks for reading
Wallace x

[rumpled]

Well Lizzie... have they checked your renin and aldosterone? And have they done an ACTH (or cortsyn) stimulation test? That may tell them a lot if you are vomiting... Wretched endos... I had to be sick so long that now I am perma-sick.
That dysautonia... that could be related... I take a lot of salt and florinef. (even though I can't spell!)

Adam!
I cannot imagine being born with this (yes, it does suck) but it seems like there are a lot of groups out there and you should be able to find someone near you...
I suffer from a lot of crap... somehow you need to get the depression under control whether it be from meds or meeting people... I know meeting other people with my diseases on boards and getting things under control did a world of good for me.
Hang in there and glad you came aboard! Why not post something in the intro so everyone will say hello?

[Maxwell'sMom]

Hi, I have no idea if they have check the alder?? can't remember now how you spelled it.
Next month they're checking for Lupus. I have no idea what's going on, I just know, I'm nauseated all the time. It's very wearing.
Adam,
Hi, welcome, jump in as much as you like. I have met one person, in person with MG. It's an unusual feeling. I have spoken with another on the phone, again, a weird feeling.
Love Lizzie

[loisba]

Keep us posted on results, Lizzie!
And welcome, Adam! Very nice to meet you, and I look forward to reading your posts.
:hug:

[rumpled]

So I went to the expert... my EMG there was largely normal (LOL)... but he still found me strange. My eyes are ok so that threw him off but I cross too easily but can hold them up. He is running a bunch of bloodwork and I go back for a SFEMG in late October. He is thinking it cannot be one thing but may be MG with fibromyalgia, polymyetis (sp), or something more muscle related. My Cushing's probably "treated" it and when that was resolved with my adrenals being removed, that is why I lost all my strength all at once. It could be that my endocrine issues wasted my muscles really badly... but he is doing tests and no diagnosis was made as yet. At least he said that whatever it is, he would not give me steroids. Thank you! I liked him.

[rumpled]

I wanted to give an update. I just had an SFEMG of the arm (my eyes are normal) and it was abnormal showing mild to moderate MG. He did run another set of tests including the MUSK tests, however, I do not have the results. He is sending me for a muscle biopsy next. He is waiting for all results to be in before a diagnosis is final but it may be mild to moderate MG or a primary muscle disease.

[Indra]

Is a test needed for diagnosis, or can it be diagnosed from just the symptoms ?

[rumpled]

I am assuming you are asking about MG since you did not specify. Since their are definite tests that can show the diagnosis, IMHO, a good doctor would put you through most if not all of them in order to rule it in or out or decide which varient or as it could be something else. and decide which treatement(s) are best.

However, not having the antibodies in not definitive - you have still have MG and be what is called 'sero-negative'. You can be given a trial of the medications and if you respond, that is also a round about test of it as well.

There are a lot of good sites posted up at the first thread there - why not read up?