Thanks Annie,
I am so confused and upset I guess., I am not sure if I like this man or not, I have no one else to compare him toooo.......I just came back from the pharmacy and they said they gave me the 60mg but I have to break it in half as the doctor ordered 30mg tablets and they do not make them...shouldn't he have know that if he takes care of people with this? Or am I just reading too much into this? At this point , I feel like just not getting the CAT scan with this Doctor and just going to another and starting from scratch , I just don't know......Any suggestions., I guess it wouldn't hurt to have the test and see him again and go from there? And question him exactly about the test and pulmonary doctor? It is just so hard as I am knew to this area and my GP is new., and I just don't know., I wish I was back in Pittsburgh, , but I am not ....











QUOTE=AnnieB3;499310]Whirlwind, It is your right to do whatever it is you want to! If you don't want an EMG then don't ask for one. If you feel comfortable with this neuro, than stick with him!

I wasn't trying to change your mind. I was trying to show you what "could" happen if you don't have all the MG tests right away. They can always do an EMG later but, like I said, then you would have to go off of drugs for it to be accurate.

If you get worse in the next few months, etc., then they may have to put you on more drugs. Then withdrawing from those drugs to do an EMG would be difficult if not dangerous. Some neuros argue that if your MG is bad that you don't have to be off of drugs before you have one. The people I know with MG who have had an EMG or SFEMG while on drugs have had a negative one. Then they go off and it is positive.

The good neurologists I have known also like to know what your "baseline" EMG is, even if it isn't positive. It's just as important to know where you've been with MG as it is to know where you are when you are worse.

Along those same lines, it is also important to be evaluated by a pulmonologist. They are the ones who can monitor your breathing if it does get worse. Again, knowing what "good" baseline breathing tests are for you will help them to compare when you get worse.

As for every little ache and pain being MG, it may or may not be. When I started feeling tired in 1997 to 1999, MG wasn't even in the picture yet. It turns out that I had both MG and a vitamin B12 deficiency. The B12 def. was treated but then I was still weak and short of breath. So you can have more than one thing going on at a time. I'm not saying this so you'll think you have more than one thing going on. I'm saying it so that you won't attribute every new symptom to MG, just "in case" something new is going on.

DO NOT stop a drug without talking to a doctor first, especially not Lipitor. A discussion is warranted, however, now that you have MG. It can make MG worse. There are ways to go off drugs, if that is what your doctor recommends, that are slow and won't be abrupt/give you side effects as much.

If you haven't spoken to an endocrinologist about your diabetes, then you should. They might be able to get you off of meds by diet and/or mild exercise. That may also reduce your cholesterol level.

While I disagree with Becky on this one about having ALL the MG tests right away, it is YOUR decision to make with your doctor. I have just been through too much, seen too much and know how doctors can go back and forth on a diagnosis if you don't have "all" the evidence (i.e., if you see a new neurologist at some point).

Just try to relax, take this one step at a time and learn as much as you can! You'll be fine. It's very overwhelming to have a new disease and it's going to take some time to get used to it. Give yourself a break!

Annie[/QUOTE]

Okay, here's my jaundiced opinion. Keep in mind that there are many people here who are more experienced with mg than I am. But, from my perspective, anytime a male neurologist tells his female patient essentially, "don't think about it too much, you'll get carried away" that's a big, red flag too me. I'll bet he wouldn't say that to a big, strapping lumberjack. So what if you come back with worse general symptoms? Is his first response going to be that you're hysterical? Because that is no fun. It's very humiliating. And it doesn't help you at all.

If you have real concerns that your arms are weak or you have other, similar problems then I think you should ask for the other tests. If he takes you seriously, then great. If not, or if he makes you feel silly, then maybe it's better to move on.

Just my two cents.

It actually sounds like you've got a good neuro........I think he was worried that STRESS can make your MG worse, and that is why he doesn't want to do all the other testing.......granted, I do not agree, as mine did every test known for MG.........

As for the tabs, that sounds like the pharmacies fault - not the neuro's. They should have all sorts of meds there for all of us.......sadly, they do not.

Mestinon is GREAT stuff - liquid form was my favorite as it worked miracles, but I take the 60 mgs tabs now...........

As for the CAT scan on your thymus, they are trying to rule out "thymoma" - if they do find it, then they will definitely want to remove it - I know Brennan had one - that will help you get one step closer to remission!

MG is scary - no doubt, but you will "level off" and get better! There are so many amazing, brilliant, caring people here that will hopefully be able to help with all of your questions............

Hang in there, hon! It does get better!
Big, big hugs!
Erin

[/QUOTE]

I know it's hard to relax, but you are fortunate in that you were not diagnosed when in crisis, like Erin and some others were. That means you have time to study things and do what you are comfortable with. I always feel sorry for people that go to the ER and find out they need emergency heart surgery! Luckily, you are not in that position. So look around on the internet, definately go to the sticky's at the top of the page - they have great links to get more information about the disease, tests, managing the disease - all kinds of good stuff there!

We'll all be here when you need us!

Hi, I wanted to echo what others have said, that your neuro in a very bad way, doesn't want you to get stressed out over this, as it can throw you into a crisis. And he doesn't want that. Now, I really wanted to say something that I don't think any one has addressed. Every Neuro does things differently when treating MG. Some start out with Mestinon, and they'll have their patient start out slow, cause Mestinon can cause terrible terrible G.I. problems, or you can accidently over dose. Some times it's to get you use to knowing how much you'll need. It may never get to be more than 30mgs, as you may not need more.
Some Neuros will start their patients out on Prednisone, and not even start Mestinon for months. (This was my case. I didn't start Mestinon until around 8 or 9 months after I was given Prednisone)
It really depends on the patient's condition, and the Neuro.
Some Neuro's go right to IVIG's, or Plasma, and some right to Imuran, Cyclosporine....etc.
I'd stick with this Neuro a little longer, and if you continue to feel like he's belittling you, or feel like you just can't have a good relationship with him, Find Another Neuro. Call your local MDA and ask who's good for Myasthenia. And by good you mean, both, knowing his stuff, and is easy to talk too.

Do you have someone who can go with you to your next appointment? I really hate saying this, but are you married, or have a brother that can go with you, to help stand up for you? An Avocate is so important. My hubby goes with me to all my appointments, just incase I really need him to talk for me.
I know this is hard, but don't get too overwhelmed with all the information. There is so much to learn, and it took me a couple years to really be on top of it. I've read just about everything, and knowledge is power, it really is.
I really feel for you, and I know what a difficult time this is for you. Wish I could sit and talk with you face to face.

Pittsburgh has Fantastic Doctors. I go to the Pulmonary Hypertenion Clinic. Although I couldn't make the regular trip for Myasthenia care, they have wonderful MG doctors there too. For PH, I only go every 6 months, to a year. But for MG, I'd have to go every so many weeks, and there is No Way I could make that 3 hour drive that often. (my husband drives me, but being the passenger wipes me out, can't imagine being the driver)
Wish you were in Pittsburgh too.
Love Lizzie
Wanted to add that if the neuro feels you need a Pulmo. he'll reccommend for you to see one. I have to see one because of Ph, and sleep apnea. But not everyone with MG has to have a Pulmonologist. For now, trust in this neuro's advice. He has your medical records, we don't, so he may be doing what is best for your body. ( I do think he stinks in the comforting area..smiles..but probably had your best interest in mind,)

I know I am just going in circles right now., and probably stressing myself unnecessarily., so I am going to try to put it on the back burner for now., as I go to bed thinking about it, and wake up thinking about it., and I don't want to make myself worse. Thanks for all your help and support.

Hey there, You are just being very normal. It's hard not to worry. It's a serious disease. You know when I was first told, I got scared, and didn't want to accept it. And then when I was diagnosed with Pulmonary hypertension, I started shaking from head to toe, and honest to goodness, thought I'd have a nervous breakdown. At least, it's what I thought a nervous breakdown felt like, and I was feeling it. I was a basket case. (Pulmonary hypertension is a terminal disease, with no cure. People now are living for years, but just a couple years back, they only lived a couple of years, but now, some are living up to 20 years. I have a very mild case, so hopefully treatment will be even better when it comes time for me to use it. Right now, since it's mild, no meds, plus right now, many of the meds are contradictory to Mg)
But when I was first told, all I could find was that most people live up to 2 to 3 years after diagnosis...It was awful. But I started reading more, got reassured by others with the disease...etc. And then, was recently diagnosed with stage 3 kidney disease, and just finished 4 weeks of iron infusion, and just got a call yesterday, saying I need four more weeks, and have had to learn to give myself injections for my kidney....not a needle person...

Sooo, I really do understand where you are coming from with your emotions. And then to be sick and weak on top of it. Not Fun! I'm 44 years old, and feel like I'm 94 sometimes...um, then I meet a 94 year old, and think, Nah, too young, I feel like 104.
Ask as many questions as you want.
Love Lizzie

Once more, a small recap about possible MG treatments :
-Mestinon: to improve muscle strength, acts immediately, action usally last 4 hours. Is not a cure, more like Aspirin, improves the symptoms.
Dosage may vary from 30mg daily to 250 mg.
-steroids: to lessen the production of antibodies, takes about a couple of months to act, except at the beginning, as a severe deterioration of patient condition sometimes occurs within days, if not hours…
Multiple side effects are to be expected, max dosage is 1 mg/kg of weight, may cause after several months at high dosage: osteoporosis, glaucoma, cataract, diabetis, weight gain, potassium loss…
-Immunosuppressors: also to lessen the production of antibodies, rather slow to act, from several months to 2 years…, side effects depend on the type of immunodepressor, usually replace steroids after taper period from high dose.
-IVIG; acts quickly but only during 4 to 6 weeks, thus must be repeated…
-Plasmapheresissimiliar in action as IVIG
-Thymectomy: an trial to suppress the production of antibodies.
I hope this little summary, will help some of you to better understand the treatments they follow or are proposed to.
And above all, talk to your neuro and don' t be afraid to ask questions, if you hear something like: "Who is the doctor, you or me?", go quickly to somebody else!
Maurice.

Well, I did some researching today, talked to some different people at MDA, and I decided for now I will take the mestinon that this neuro prescribed and get the CAT scan of the chest, thymus., but I made an appointment with another neuro who cannot see me till August., but they will try to call me if there are any other cancellations, since I am a new patient., this neuro has his own private practice and also is co-director of MDA clinic., and they talked very highly of his staff and his compassion and concern for his patients, so I thought since I really didn't seem as comfortable as I should with the neuro and had to wait so long to get into the new one , I will just take my mestinon and get the CAT scan and see him till I go to the new one. They are also sending me from the MDA for me to fill out info for them and can take part of things they offer or down the line go to the clinic as they will pay my deductibles. They were very helpful. So I think I will be comfortable with that for now.
Thanks.

Lizzy,
I'm sorry to hear all that you have to deal with! You are an inspiration though, in how you keep helping others and are keeping a positive outlook! Thank God for people like you on the forum.

Keep the faith!