Hi everyone - I've been reading the threads and want to say thanks - been learning alot and quick! - thank you all

Wonder if anyone else has been in my shoes:

Was following up with vascular doc for supposed carotid stenosis; he redid CTA - go and talk to him and he tells me it's an over-read (thankfully!) BUT my thymus is large and "lumpy" (his exact words) and it shouldn't be considering I'm a 45 year old female and btw what about your eye? I tell him my eye usually droops when I get cluster headaches (nasty things those) but now it just droops on its own for the last 4-5 months and gets worse by end of day to the point I've been considering changing my name to Popeye from all the jokes and comments I get about it at work... he starts asking more questions.... then tells me go see neuro and GP, then calls my GP.....

I go see GP: GP orders what seems like a ton of blood tests, including an antibody test -tells me everything is negative, heck even my cholesterol is good... but sends me to new neuro (old one retired) anyway as I haven't followed up on the cluster headaches in a year (hey remission is a wonderful word from heaven when it comes to those nightmares!)

So I go see new neuro; neuro does exam, during which I fall twice and get double vision when he does his "follow the finger" routine and can't force my chin to my chest against his hand... asks me bunch of questions - to which I finally tell him I thought it was all apart of getting older and have just been coping with "wearing out sooner" than I use to - and no I wasn't happy that my get up and go and gotten up and left without me but it happens as you get older right? And besides Claritan D or more specifically ephedrine when I could find it usually helps and yes I know it isn't good for me but I have sort of gotten desperate to get even ordinary things done and at least it helped me get thru the work day without falling over, needing a nap or turning into Popeye before lunch when things got bad

Neuro starts getting all excited and tells me he's setting up a tensilon test - okay have no idea what that is but if it gives me my go go, not to mention my eye and face back - I'm game...

Do the tensilon test at the hospital; watch as nurse and neuro are pointing at me and each other going "that's positive , that's positive, WOW is that positive"......(my eye, whole face and neck strength /balance came back and I felt like a million bucks- for about 3 minutes then I became a member of the wax museum again with half my face dripping off...) At which point neuro tells me "You've got myasthenia gravis, make an appointment to see me, have a good day...."

So now I'm scheduled to see him Thursday and
1. trying to figure out just what myasthenia gravis is
2. wondering what else I've been "ignoring" or working around that is actually a part/symptom of MG.... silly things like I've lost my voice 3 times this week (no sore throat- but can't get any volume even if I try yelling) or that I feel like a wrung out dishrag doll with wood arms that is pretending to be a weeble wobble more often than not lately, and the thought of walking up stairs is enough to make me sit down and think about if it's really necessary cause I'm not sure I'm going to catch myself the next time my legs "go rubber"...

I'm wondering too what I should ask him - what about "lumpy" (thymus)... did I "mask" this or worse yet did I trigger/cause it with the ephedrine (and why does it help short term?- although I grant it definitely is not lasting as long as it did a month or two ago) .... and I for the life of me cannot figure out his reaction - all excited to figure out what was going on then a lackidaisical "oh just make an appointment to come see me".....

any thoughts? advice? Or anyone got a flashlight or roadmap to help me figure out where the heck I'm going next with this?

Hi, and welcome! The doctor might seem weird to you, but I understand why he was excited. It's because MG is hard to diagnose when the antibodies test comes back negative. Your response to the tensilon test was a beautiful thing for him to see, because it was so clear.

Here's some good news: there is a drug you can take that acts like tensilon. It's called Mestinon (generic: pyridostigmine). It's probably going to help you a lot! I'm sure you'll come out of your neuro appointment with a prescription for it. It may do wonders for you. Work with your neuro to find the right dose (too much is as bad as too little), and there's also a time-release version if you need it.

Mestinon is just for treating symptoms. It works four about four hours at a time. You will also be given a long-term treatment that's designed to put you into remission. One possibility is drugs to suppress your immune system, to stop it from attacking your neuromuscular junctions. There are a handful of choices here--some act slowly but have fewer side effects, and some act quickly but are more trouble. You may also be a candidate for having your thymus removed. Don't forget to ask him about your thymus!

Re: ephedrine: that's an old treatment for myasthenia gravis. I'm not sure if anyone knows why it works, but it seems to, for some people at least.

Yep, your voice loss is caused by the MG, definitely. All the symptoms you describe sound typical of MG to me. Please, please be careful not to fall, especially on the stairs.

One more thing: MG can tank really fast. If you have trouble breathing, or start to choke, or are falling frequently, don't fool around. These are danger signs. Go to the ER. There are treatments for MG that work really well and really fast: one is IV infusions of immunoglobulin (IVIG), and the other is plasmapheresis (sort of like dialysis). These are reserved for people who need to get past a crisis, because they're expensive and cumbersome. I mention them so you'll know that if you have a crisis, treatment is available. Don't take chances!

Feel free to ask any questions as they come up! I'm so sorry you have MG, but how good to be diagnosed. You're sero-negative (that means the blood tests didn't find the antibodies) and that often (guess how I know...) leads to a long, long road of going doctor to doctor, wondering if it's all in your head, having doctors suggest the problem is emotional...so, here's hoping that now you know what's wrong, that the treatments are a whopping success.

Abby

My concern would be the issue with your Thymus. If they're saying it is large and "lumpy" ... you're (probably) going to want to get it out of you. You need to have that CT reviewed by your Neuro and/or a thoracic surgeon. Become good friends with your GP, you're going to need an advocate to get yourself through the medical system.

MG can be well maintained but is a chronic disorder. You can expect your neuro to put you on mestinon and/or immuno-suppressants.

Best of luck and don't be shy about asking questions.

Brian

I'm seronegative too and had the same response to my tensilon test as you did. I also had the same reaction to the diagnosis.... Mya what????

I'm sorry that you have MG but as Abby said I'm glad that you received your diagnosis so quickly. Many people go years before being diagnosed and there are some seronegative people who still aren't diagnosed regardless of their symptoms. Early diagnosis means that they can get started on your treatment plan right away and that's a good thing

This is a great forum with great people so I'm glad you found your way here.

Oh, and welcome to the MG Forum

Well, the good news is that you have a diagnosis! As you learn more about MG, you might think that it's a "bad" thing - and it's no fun to "get" this diagnosis - but for most people, MG is a "manageable" illness, and it is almost never fatal.

The good news is that with a positive diagnosis you will be able to do research and know what doctors should and shouldn't do - which will be EXTREMELY important if you ever need surgery, as the anesthesiologist will be alerted to your weakened muscles (there are some medications that should NEVER be used on patients with MG).

I was 49 when I was first diagnosed, and like you I thought that all of my slowing down (which came on slowly at first, but was becoming much more pronounced just prior to Dx) was due to age, being out of shape, my weight, etc. What a relief to find out that I wasn't imagining things!

The golden lining for me has been that I can now tell people, "I CAN'T do that strenuous exercise - it would literally kill me...."

The look on their face is priceless, but after I explain the "why" behind that statement, it shuts them up!

The folks on this board are great, and have been a source of much help -

Welcome RavenRed!! Absolutely loved your descriptions...we MG'ers could 'tell' you had MG even without the tensilon test!! But as all have said, you are extremely fortunate to have found a wise, responsive neurologist. And, who knows, you may be his first MG dx!

Do be sure you get your thymus scan results for your neuro. You may have to sign permission to transfer from your vascular doc - - or just pick up the report yourself and bring it with you to neuro. This will keep you from having to have another CT (always wise to limit these as much as possible) since neuro will definitely want to check out your thymus and have a chat with you about that. If he or any other doc needs to actually see the CT film results, you can sign permissions for that also.

There are a few places on the web that you can go to get more info on MG.
- cleveland clinic, mayo clinic, and many other sites have the standard info/frequently asked ??
- the national MDA site has some good info too - and has a pretty good list of drugs, etc. that are to be avoided by MG'ers - - - as well as things that can accelerate our weakness (like temperature extremes, exercise, stress, etc.)

- and finally, if you really want to get into the biochemistry of it all, do a web search on NMJ and MG....all sorts of bedtime reading will pop up!

In answer to did you do anything to cause MG...no, you didn't. There is a problem in the neuro-muscular junctions of your body. (see 3rd item above - - lots of info on this NMJ stuff on the web)

What comes next? Maybe more blood work. Perhaps a consultation on your 'lumpy' thymus with a surgeon. And for sure, discussions about course of action and medications. No cure...but there are drugs out there that are used to try for remisssion.

I would recommend that you begin your own medical file. Get copies of any / every test result, doctor's notes from every visit, and journal your own responses to meds, etc. (esp in the beginning). It is amazing how much of an advocate you will need to become for yourself. It is far easier if you gather your ammunition along the way !!

Glad you found this site - wide range of info directly from folks who have gone through things themselves. Please let us know how your doc appointments go and always, always feel free to ask any question.

Thank you all!

You were all right!; Neuro sat me down, said yep, losing the voice is part of this ... talked to me about Mestinon and wrote a script - he wants to start out "gently" considering I had such a good reaction to the tensilon - 60mg 6 hrs apart. He also told me I'm his first Mger so we gonna have to take it step by step and learn together and to make sure I talk to him - even if it doesn't seem "that important".... as to "lumpy" he says lets see 1) how I do on the meds 2) if it gets bigger (i.e. another scan after meds for awhile)


I have to admit I'm abit scared (okay terrified as everything seems to be going downhill so quickly) but seeing that others are getting thru it has helped - I look forward to talking to all

Here's a good overview. It was published 2007 and is clearly written. It will help you with your questions along the way and your neurologist might be interested in it as well. Another good site is myasthenia.org, which is the MGFA site, a little reading to do while you get stronger and stronger.

http://www.ncbi.nlm.nih.gov/pmc/arti...11463/#__sec21

nc

Great! The fact that you're his first MGer also explains his excitement when you responded to the Tensilon test just like the textbook says you're supposed to do.

I'm glad you got the Mestinon prescription. Here's some things to know. First of all, if it bothers your stomach, take with food. It bothers some people's stomachs, but not others'.

Mestinon has a really short half-life. After about four hours, about half of it has already left your body. So if you find that it works, but only for a few hours, typically the neuro will tell you to take it more often instead of taking higher doses. That makes a lot of sense.

Understand that too much Mestinon can make you weaker. So pay very careful attention to how it affects you. If you keep a journal, you will be surprised at the patterns that show up that you hadn't noticed. Write down when you took the meds, what symptoms you have when, and anything else that seems relevant: how much sleep you got, what activities you did, any emotional upsets, heat or cold. A lot of MGers do better in the cold.

Some people find they need Mestinon at night, if they wake up choking or wake up with double vision (your eyes move in your sleep). If you do, ask for Time-span, a time-release version of Mestinon that saves you from having to get up in the middle of the night to take a pill.

Again, take new symptoms seriously! Any trouble breathing, choking, or sudden or extreme weakness can be a sign that you're headed for a crisis, which is a medical emergency. There are emergency treatments for MG.

Abby

Welcome Ravenred,
There truly are a lot of good people on this site - some - like me - come and go a bit but that is a bit of the nature of this disease. On days where one feels good you just want to grab life by the horns and live it - other days that you get bummed out its time to drop in and get some support from others if only by reading!
I was DX in early spring - after years of thinking why am I sooo tired - facial problems and breathing and swallowing problems etc - my original Dr suggested I see a shrink - I got a new Dr and a real DX!
I love the outdoors - love to hunt and fish and just be outside - so for someone that has been very active this has been rough at times. Now, this past weekend I took two very nice deer with my archery equipment - earlier this year I thought I was finished - so you can do a lot but in smaller portions. This week now I have crashed a bit due to the over excercise from the past weekend. Just part of the cycle - enjoy the good days and get some hugs on the bad ones. Just remember you have friends bound by the same fate!
Randy