I was wondering if any of you on this thread has a hard time finding a good primary care physician? My neuro muscular specialist is 4 hours from my home. I have been trying to find a good primary care phys who is close to my home that can work hand in hand with my neuro. I went to the doctor today with flu like symptoms...i tested neg but had a severe sore throat. Anyway the doc was gone and I had to see a CRNP. She wanted to give me a antibiotic that I should not have.....I just know we have to definitely educate ourselves with this rare disease. I guess most of you have your neuro as well as a primary care physician to treat you?

I'm sorry you had that experience, though not surprised. Give her a break. Most people don't know about contraindicated meds for MG. Be careful with the Quinolones. They can make someone with MG worse. I can take Biaxin, for example, but some other MGers can't. A lot of times it's trial and error with drugs.

I have a primary doctor. It's essential! Neuros only do MG stuff, sometimes physical therapy stuff. My neuro has a PT dept. in the office. I also have a pulmonologist because they manage the breathing aspect of MG. When my MG gets worse, I'll often see her before my neuro.

Have you looked up the offices that are close to you? Is there anyone around there who can recommend a primary to you? Even a primary doc may need educating about MG. You could always bring in a list to a new doctor and politely present it to them. Some doctors don't like it when patients give them info! Silly doctors.

I hope you will get more help if you get worse, especially your breathing. Hope you feel better soon.

Annie

YES, I don't even have a PCP at this point really. I am newly diagnosed and have been thinking I need to start looking for one. I've had a wonderful PCP for years and years but she works at Kansas University Hospital and has really gotten into the research end of things and is only seeing patients one day a week now. It takes weeks to get scheduled with her and with MG I don't think that is a safe option anymore. I have wondered how important a PCP is at times considering I have a slew of other Drs including Hematologist, Dermatologist for previous malignant melanoma, Gynocologist and now 2 Nueros and an optho. It sounds like from what I've seen others post it is important to have a good PCP though. Do those of you that have MG only see your PCP for nonrelated MG things like viruses or infections and do you feel it is best to start with them instead of our Neuros when we are sick? I am so confused right now about what is MG related and what isn't and am terrified of being given something that those of us with MG shouldn't have. I have read the lists over several times but probably need to print it off and carry it with me all the time. One other question. Do any of you wear a Medical ID bracelet in case of any emergency where you were hurt or unable to speak? I'm thinking I should get one just to be safe. Soooo much to learn but I am so thankful for the knowledge of everyone here. It has truly helped.
Kendra

I asked my neuro this question - - response...not necessary you are not 'bad enough' and are not heavy into the meds. But, in my opinion, if you're taking significant qtys of drugs and/or doing IVIG or plasmapheresis - I would think a bracelet (along with a current med card with doages in wallet) wouldn't be a bad idea. After all, what harm could there be?

Sue

Kendra, I'm sorry you are confused about MG versus other things. Can you do a separate post? So many people here can help you work all that out!

A primary care physician is essential for EVERYONE, sick or not. They are like a quarterback who brings all of the other information from other specialists together. So they will know what is contraindicated, etc. - with your help - and what they can do when you get infections or broken bones or whatever.

Specialists like neuros became specialists so they could work ONLY in that area. Yes, they are internists first but that is not the area they are practicing medicine in. It's not really fair to ask them to do what an internist/primary care physician does. I'm sure some don't mind but it's just not the best way to doctor.

I'm sorry Sue, I'm going to have to disagree with your doctor! People who are not sick, should carry a Med Alert card in their wallets. If only for the emergency contact information in case something should happen to them. They should have their insurance info on it and their doctor(s).

Someone who has had, let's say, a knee replacement needs to carry a med alert card. Anyone on ANY meds or with any past surgeries or hospitalizations needs one. People who are sick, absolutely need one! It doesn't matter how you are doing today. MG is unpredictable and there is no way to tell when you are going to go downhill.

As far as the bracelet goes (or necklace, ring or tattoo!), if you have a serious medical condition, you need to have a visible way the paramedics can figure out that you do. This is especially true if you are away from home and your local hospital. Like on vacation (as if that happens very often!).

You can also make sure that your local hospitals have all your information but that won't help the paramedics if you need them.

Now, this is only my opinion. You can do whatever you want. But I'd rather be safe than dead. I hope this info helps you.

Annie

Info I have on my Med Alert Card. It's more like a "brochure" at this point really! It's four little "pages." 5-1/2 x 5-1/2, folded and printed on both sides. I use red ink for the important things! I have had the paramedics say how glad they are to see something like that. It makes their jobs a lot easier. Otherwise they have to guess at what's wrong with you!

Name, address, phone number
Social security number
Insurance information & numbers
Emergency contact names and numbers
ALL doctor names, specialities and numbers
Conditions and their current medications (doses, when, etc.)
Past surgeries or hospitalizations
Allergies (food, drug, respiratory and skin)
Drug Allergies (very important)
What drugs you CAN take!
Contraindicated medications and foods (like nightshades)

I even have a blurb on my Med Alert card about Oxygen saturation and MG! Including that the first sign on an arterial blood gas makes it look like we are hyperventilating but it's not due to anxiety!!!

Sue,
I agree with you 100% that there is no harm in carrying a Medical ID alert. To me it is just too scary to think of being in a car wreck or injured and them not know about the MG. I plan to get one just for my own piece of mind.

I also like Annie's idea of having a card she can hand paramedics if necessary. I just told my son I was going to write my info down on a piece of paper and put in on the refrigerator just in case he ever needed it.

JCPA,
I am planning to talk to my Neuro and see if he can recommend a good PCP. Maybe one of your current Dr. can do the same. Good luck!
Kendra

Thanks so much for all the great advice here. I am going to try another physician and hope that I get the care needed. I'm especially nervous because I'm scheduled for a Thymectomy at the end of October. I would like to have a good prim care phys close to my home ( 30 minutes away) that can work alongside my neuro and surgeon (4 hrs away) during the recovery.

My grandmother used a internal med doctor and My mom mentioned him. At first they said he wasn't taking patients but they called today and said they would be glad to take me on. Yay!

As always thanks for all the great and valuable advice from all of you. I consider it a priviledge to be part of the group here!

JCPA,
There's another less thought of good reason for a good PCP. When you have an illness like MG, as you've read, you generally end up with more than one specialist. You also have blood labs, and other tests being run often in different places. The PCP gets a copy of all tests, etc. and is an excellent source for this information when needed if you don't have all your records. Of course, the quality of the PCP is important though.

I had a PCP for years before my final dx of MG. I just loved him and he seemed very competent. His whole office new me on sight and he and I were on a first name basis. After I was diagnosed, though, he continually gave me advice that wasn't good - like that I needed to start jogging to get into shape, drugs I shouldn't take, etc. At first I chalked it up to the rarity of MG, but after a while I felt that he was kind of lazy. In my opinion, if a PCP takes on a "special needs" patient, they should make it their business to educate themselves on that person's diagnosed condition to avoid giving bad advice.

I have fired him, and when interviewing new docs, I always asked if they had more than normal knowlege of MG. I found one who is very familiar with the disease and what to avoid, etc. I feel much more comfortable now, and he has made a great contribution to my medical care.

It may be a shot in the dark since your neuro is so far away, but I feel you should ask your Neuro to give you a recommendation if at all possible. I did that, and did get names of some docs she had respect for, but ended up choosing this doctor closer to me based on my interview with him. I too have to travel a distance to get to my neuro, and unfortunately she was referring docs close to her location.

Good luck with your search.

Annie,

I think a medical card is a great idea and probably necessary in some cases. I will work on one for myself. Thank you for the reminder.

Please keep in mind that wallets get stolen occasionally and it is not a good idea to list your social security number near your name and any credit cards. I had my wallet stolen and had a terrible experience (I have such bad luck, this happened 3 days before my first MG symptom!). Luckily my social security number was not to be found anywhere in my wallet and I was able to resolve all the unauthorized uses of my credit card. I am told that still my information could be used and I have to keep an eye on my credit reports.

Hey hon! I wear the bracelet and also keep a list with all of my info on it..just in case.

I keep one on me @ all times and have one @ home as well. I also have a copy @ the hosp and update my PCP or neuro if there are any changes in meds - for any reason!

Hope this helps!

LOve,
Erin