Doctor team?
 

Reading through posts it sounds like many people have a sort of team or complimentary suite of doctors.

I just moved for a new job and am going to be enrolling in a (crappy) HMO. The only alternative is a very high deductible PPO with where you pay 20% of everything and have to deal with receipts, reimbursements and all sorts of crap for every doctor visit. Neither are great options as one puts too much stress on me for figuring out payment, but the other has very few specialist options.

Anyway, there is a "Family Practice" DO listed as a PCP who specializes in neuromusculoskeletal medicine and internal medicine who I think will be my first try at a new pcp.

The hmo only offers 2 neurologists, both at the same medical group, which is somewhat inconvenient for me to get to.

My questions are purely to gain your opinion (aka what would you do).

Should I think about getting a pulmonologist or cardiologist, too?
Should I be referred to one of these two neuros AND consider trying to go to a specialist out of pocket?
If the hmo neuros don't seem to fit, should I just pay out of pocket for another neuro in town?
I really think I want to try surgery, but I don't believe the hospitals covered by my hmo are skilled... and I don't think ANY hospital in Las Vegas is ranked average or above.

I need a care navigator even though I don't have cancer! :rolleyes::rolleyes:

Kat, I almost can't handle situations such as yours. I'm sorry you are facing so many restrictions on your health choices. And finances.

If you decide to have a thymectomy, do not leave that in the hands of those who haven't done them! I would recommend going to Mayo in AZ to have it done, if you can obtain a referral there. Only you can weight the potential benefits of a thymectomy with the costs involved, and the time lost from work.

I see a pulmonologist who practices at the local hospital. Why? They then know my normal numbers, everything is in the computer, and, if I have a MG crisis, those doctors work with neurologists to care for me. In that sense, a neuro-pulmy team is vital to have.

I do have a cardiologist, but you wouldn't have to have one unless there is a need. The heart is monitored during a MG crisis, due to hypoxemia. Being a woman and over 40 is reason enough to see a cardiologist. But seeing one on a regular basis is overkill if there isn't anything wrong with your heart/BP.

Do you know anyone in NV? Family? If you have surgery, you'll want someone to check in on you or help you with basic needs.

I don't envy the decision-making that you have to do. Only you can figure out what's best. I hope the doctors there surprise you and treat you really well!

:grouphug:
Annie

Thanks, Annie.

I was looking at Mayo Clinic, actually. I might be able to bully the insurance into making an exception for having surgery there if I can argue that they have a true MG specialist available to coordinate care. Currently, Vegas has neurologists, but none are listed with MGFA as being specialists.

I guess first I have to get my coverage started, get into that PCP and get a referral to one of the local neuros - or ask the PCP what he thinks I should do.

There's so much to be said about health"care" in the US, most of it not good!

Hi MG_Kat 33,

I agree, the situation with the HMO sounds less than ideal. However, if this is the HMO that your new employer offers and you'll be using, it seems worth a try. You never know. The local neurologists in their system could actually be good. My local neurologist has been wonderful, and a great help to me, and she's not on the MGFA registry. Sometimes local doctors can be great.

It's also true that you can be referred out of system for special care, even if you belong to an HMO. It would take a lot of work and effort, but this is true of most HMOs, and probably is true for yours as well. If you want to go to Mayo in Arizona, it may be possible to do that and have it covered, but you may need to see the local neurologists and get their support for the referral.

Another plus in being part of an HMO or PPO is that yes, sometimes you can have a care specialist or navigator assigned to your case if you have a lot to manage medically. I was a part of an HMO in the past, and I had a care specialist assigned to me. She was extremely helpful! I am so glad I said "yes" when that was offered to me. She helped me find better doctors, and she checked in with me about once a month to find out how I was doing. She was really helpful in many ways; she was a nurse who could also answer medical questions, and she was fantastic. If your system offers that service, consider taking advantage of it. It may prove to be very useful.

Take care,
Erin

If you are expanding your search to include the Phoenix area
 

May I recommend the Gregory W. Fulton Neuromuscular Disease Center, Barrow Neurological Institute, St. Josephs' Hospital.

They diagnosed me and managed to get me back to a state that has a fair approximation of "Normal".

It took about 30 days to get in,but it was during the winter season,so your mileage may vary.

Barrow Neurological Institute is one of the top Neuro institutes in the world, and it's a teaching hospital. I was in for 6 days to get plasmapharesis, and had a steady stream of people through to see the MG case.

You can P.M. me if you want more info.

Thanks, Erin and Nac.

Erin: I wasn't being serious about the care navigator quip, but now I will definitely look into it!

I definitely will give the local, covered docs first shot... it's semi-helpful that I have the diagnosis already, at least. My biggest concern is that I went into hospital 3 weeks ago with a serious flare (no ventilation needed, but O2 stats were low and my heart was racing to keep me mobile and alert), had 5 rounds of PLEX over 10 days, and now 2 weeks out I'm not feeling those amazing effects PLEX is supposed to provide? I felt pretty great for 2 days, but now I'm back battling weak jaw and face muscles, fatigue and sometimes weakness in the arms and hands. I wonder if stress + menstruation + heat + my health anxiety has cancelled out a lot of the good from PLEX... sorry for the rambling, I'm basically trying to do all of this on my own :hissyfit::hissyfit:

Nac: I saw an MG doc from Barrow listed on the MGFA list. Mayo is nationally known, so it's good to hear a recommendation for a local place. I wonder if their out of pocket expenses would be any lower... I'll message you!

Thank you all for being here and using your precious energy to reply!:grouphug:

My doc team is my wife of 56 years. She goes to ALL of my appts and fed me when I was shaking so bad. She knows as much as the docs after 9 years of study.
Mike

Mike,

You are definitely lucky to have her! I, sadly, have nobody that close.


My symptoms are definitely back and I am struggling to think how I will even last through the next week of my brand new job - and the weeks it will take to schedule an appointment with a new PCP and neurologist after my health benefits finally kick in sometime next week. :(

I'm half-tempted to go to the ER of a hospital that has at least one of the 3 neuromuscular specialists in town associated with it, complain of breathing problems and tell them to "consult the neuro because I have MG."

I think (aka know) I need medication adjustments. If the prednisone treatment were working, I wouldn't have had an exacerbation sending me to the hospital - but my neuro (nor the hospital neuro) didn't mention changing my dosing after PLEX or adding mestinon, even though I'm only a month into the azathioprine. Doesn't it sound stupid to not give me mestinon or up my prednisone again to help with symptoms until the aza has time to kick in? I feel like I was set up to be visiting the ER again in 4-8 weeks when the PLEX wears off and my symptoms come back at the same or worse level as before.

I've also thought back and noticed that my appetite has really been depressed since the azathioprine/symptom worsening and I don't know if it is a loop? During PLEX treatments I was eating regularly, not huge meals and fairly low-calorie as it it was the hospital. Since moving, I've noticed that I eat about 3-4 times a day (most days but not all), but I would classify it more as snacking. I have consequently lost weight - even while on prednisone. Sounds stupid, kinda, but could the lack of eating be causing me more symptoms? (I am overweight, so I have plenty of stores to draw from for energy... never thought I'd be concerned instead of happy about weight loss!)

Sorry for my whining and rambling. It helps me to "talk" and at least think someone is out there "listening," otherwise I feel a bit Bridget Jones-y about it (Dying alone in my apartment and not being found until half-eaten by my cat...).:wink:

So thank you if you've read this, even if you don't respond! :hug::hug:

Read read read

Dear MG_Kat33,

I'm sorry to hear that your symptoms are worsening again. It's so hard when that is happening! It is really rough to have to wait until your new health plan begins. You might try calling the new PCP and neurologist's office, and explain your that you will soon have new insurance. Ask if there is any way you can at least schedule your appointments now, and that your insurance will become effective soon. It is worth a try, I think. That way your appointments would at least be on the books.

Yes, absolutely, do go to the ER if your symptoms become worse and you think it is urgent. Hopefully the meds will help you get through until you can see your doctor and get your medications adjustment (or whatever other treatment you might need).

Meanwhile, people can have varying reactions to prednisone. I've only been on it for short-term treatment, but I had the same response. It has always made me feel sort of queasy, so I did not feel like eating very much, either. Many people have the opposite response, and they want to eat more, but not everyone. I have lost weight when on prednisone or other steroids, also. They can be very irritating to the stomach. Do you take it with meals or a snack? It's a good idea.

Sending lots of good wishes your way. Hang in there, and please take good care of yourself!

Thinking of you,
Erin

My problem is knowing what really is urgent. Some people on the various MG forms seem to constantly have breathing issues, and that might be my new normal right now. So when is it so bad (aside from collapse or near signs of cysnosis) that I should go to the er? I can't afford two er visits and 2 hospital admissions within 3 weeks of each other! :eek::eek::(

Dear MG_Kat33,

I agree, it can be hard to know what is urgent. It is hard, and you may have to use your judgement. There could be a step in-between going to the ER and not getting care. If you know the doctor you will be seeing, and you are concerned about your symptoms but think it is not quite time to go to the ER yet, you could make an appointment to see the neurologist even though your insurance has not yet begun. They may be able to adjust your medications and help you, or start you on Mestinon if you are not already taking it (didn't you say you are not presently taking Mestinon?). That might be more affordable than going to the ER. However, if it is very hard to breathe, you may have to go to the ER anyway. If you are struggling to breathe so much that you cannot speak full sentences, for instance...maybe you can only get a few words out a time...that is a concern. If your difficulty breathing makes it hard to sleep at night, that is a concern. If you notice that you are choking more, or drooling more (these things can happen also) these are also bigger problems. If you are struggling to walk very significantly or falling, then that, too, is a problem. With these sorts of symptoms, then you do need to seek urgent assistance. I would say basically, if your breathing is so difficult that you are concerned with it and it is a struggle to breathe, go to the ER or call 911. It is very hard to worry about the financial end of it, but the hospital can work with you about the payment if necessary. There are options with payment plans and other arrangements. Getting the treatment you need is essential, especially during this hot summer weather. Please take good care of yourself.

Take care,
Erin

Thanks, Erin. Those are useful markers to look out for and make me feel a little bit less anxious - which of course is very important!

Every time I try to call to see a neuro, they are all in a group practice setting and the receptionists are adamant that they won't take cash patients - and/or that they have no availability for months. Sigh, I never should have left CA - if only I knew now what I didn't know 3 months ago when I accepted a new job!

MG_Kat33, I'm just so sorry about the difficulties with your change in location, and everything that has gone with it. I also really don't understand doctor's offices sometimes! I wish they would see you as a patient, especially when you will soon have insurance. So many things are a mystery to me.

I would say to do everything you can in the meantime to take good care of yourself. Rest when you can. Hopefully your home has air conditioning. Make good use of it! I have large ice packs, which are really used for treating sore muscles. I wrap them in a towel, and sit against them in this hot weather, or put them against my abdomen. They help cool me. I also bought a neck wrap with a freezable insert online. It was not expensive, about $10. In our recent weather, around 100F, the frozen insert lasts maybe 90 minutes, but it does seem to help me get through the hot outdoor weather a little better when I have to be in it. Sometimes I even wear it indoors when the air conditioning is not as effective as I wish. If your breathing is affecting your sleep, try propping yourself up with pillows, so that your upper body is raised.

I imagine you already know these things, but I'd say do whatever else you can do to make life easy until you have your new health insurance and you can get an appointment to see the doctor(s). Eat things that are easy to eat and require little cleanup. Use disposable plates. Do the laundry less often. You can get back to your normal routines later. Do whatever you can to let your body rest when you get home, and reduce stress. If you have an funny television show you like to watch at night, do that! Or listen to some music you like before bedtime. I like to knit or crochet if I feel up to it...I find it very peaceful. Reducing stress helps MG symptoms also, they say. I believe it is true.

Sending you many good wishes from California,
Erin

Just a note on the breathing issue
 

You might want to check your Doc about a sleep test, or the availability of a CPAP machine. At the support group here, all the guys and most of the women were using them. It sort of acts to help put more air into you and make it easier to breathe.

The chest/ribcage muscles are affected by MG, so breathing is more difficult. A little help might make some difference. When I was really bad, mine really helped me out.

I'm just offering what little experience I have, and my support. It helps to know you're not alone sometimes.

Yup, I have a whole list of things to talk to my new doctor about... once I find him/her :D:cool:

I actually was given a take home sleep test when discharged from the hospital, but it was broken, so I couldn't actually do it. I suspect it wouldn't have found much since I was sleeping so well in the hospital and feeling so good from the PLEX. Gotta have my normal level of anxiety and bodily discomfort when I try it again, lol.

Although I'm not exactly sure why one of my docs can't just Rx one and have me go get it fitted. Especially since I could have no apnea but still benefit from resting my chest muscles through the night or when feeling weak.

Hi MG_Kat33,

It is a little more complicated than that. Having a breathing machine at night can be helpful, but they need to find out first if it is appropriate for you. This means having a sleep study done first, to do monitoring while you sleep and see how your oxygen levels, breathing, and heart rate are through the night (among other things). They should also order general pulmonary testing, to see how your regular pulmonary function is. It can help them decide what type of machine you might need, whether a CPAP or a BIPAP would be more appropriate. If they think you do require a machine, sometimes they ask you to come for a second night at the sleep study center, so they can try various machines and masks, and find out which ones work better for you. It's a lot to go through, but it is a good way to make sure you get the right machine and equipment for your particular needs.

I'm still sending lots of good wishes your way.

Take care,
Erin

Thanks, ErinBear.

I'm feeling slightly better today. I think I have actually been trying to fight off a cold, of all things. I set up a humidifier in the room, am desperately trying to eat and drink more to give my body energy, and at the same time basically sitting or lying in bed and loading on Vit D and Vit C.

I know colds can become dangerous for us, but it actually makes me slightly less anxious, because I was previously fearing heart failure from my symptoms, and a cold I can do definite things to try and get rid of!

My breathing effort is already more of an "only if I think about it/something makes me think about" issue. And though I haven't had a runny nose, it was definitely very congested and today at least one nasal passage is clear, haha.

Spending the day researching PCPs, neuros, pulmonologists and hospitals in the area that take my new insurance to try to get a COORDINATED care team together as quickly as I can. AKa: PCP has admitting privileges to preferred hospitals and at least one of my specialists would be associated with the hospital. Almost impossible for all three to be associated with same hospital if you want doctors who seem experienced. :hug:

I hope you are surviving the heat!

Dear MG_Kat33,

I'm so sorry to hear about your cold! Yes, please do take extra-good care of yourself. I hope it will start to go away as soon as possible. It seems like there is something particularly unfair about getting a cold in the summer months, somehow. But hopefully with good care, it will subside, and you'll feel better soon.

Good for you, working on figuring out doctors who can help provide care when you get your insurance. I'm sending lots of good thoughts your way!

Take care,
Erin