So this morning I had an appointment with my mg specialist. I had called two days ago complaining about shortness of breath going up the stairs and random symptoms and then he asked that I come see him today. So I did. I missed school, went there, and within an hour i was done. My vitals were very high. Blood pressure: 157/87. My pulse was 101 just sitting down. He said I was out of the woods, and had turned a corner with my mg. Said I looked better than I did before.

>> I don't trust him. He thinks my cellcept is already working, which I don't think is true. And he says the mestinon is helping. I wish I trusted him. Yet I think he wants me just for research.

He did realize my problem with high blood pressure and pulse, and ordered a ekg and thyroid blood test. I had both of those done, and I hope they show something, because something isn't right.


Do u think I should trust him?

Hi, I'm new here, and I just wanted to say, keep fighting--it takes so much emotional energy to deal with this thing, and I admire your resolve.

When you mentioned the blood pressure and pulse, I thought, "Oh, he should have a thyroid test!" so I was glad to keep reading and see that your doctor gave you one. I have Graves' Disease (hyperthyroidism) and MG. I understand they sometimes go together (I think the antibodies are similar). But believe me, Graves' is much easier to deal with!!

Hi, I hope things are going better for you... I have had a similar experience and my high BP has been blamed on the fact that "I'm just not feeling well" and boy is that frustrating. Also keep in mind a family history, BP wise and such. I find with myself that any change in my health and I jump to "MG" as the culprit, partly because of its seriousness, but also that it usually is MG related in the end! You know yourself best and if you think somethings up then try your best to convey it. I know some doctors are a little more resistant to it, but do your best to advocate for yourself... Good luck!

Hi Tyson,

I think you are wise to be skeptical - but I would wait to act on that skepticism until you get the results of the two tests.

Then, if there is 'nothing wrong', I would be prepared to ask some very specific questions.
Based onthe answers to your questions, I would proceed to either:
1) follow his directions
2) nicely asking for a referral because you are not comfortable with the 'nothing's wrong' diagnosis.

Good luck - let your instincts be your guide....you have good instincts, trust them.

Sue

Tyson, Cellcept simply doesn't kick in that quickly. Maybe you are an exception, who knows.

A neurologist sending a patient for an ECG without a referral to a cardiologist is like an endocrinologist sending a pregnant woman with abdominal pains for an ultrasound without a gynecology referral. Specialty doctors sometimes do this to the detriment of their patients. You need a cardiologist, one who is younger and has been practicing long enough to know what's what. I swear the younger ones are much better at not pooh-poohing patients. Cardiologists are the only type of doctors who can thoroughly and carefully evaluate your situation.

The only thing that doesn't sound like Graves is the high BP. I don't know if you've been experiencing any of the symptoms of it. You do feel better in cool weather.

Please be careful. Until they figure out what is going on, you need to not put stress on your body/heart. Just as a precaution. Maybe nothing is going on but that's a very high BP for someone your age. Mine barely got to 100/60 when I was younger.

A high pulse can also mean dehydration or infection (or other reasons).

Whatever is going on, I hope they can figure it out soon for your sake.

Annie

I too went to the Dr. today and since I am still having many problems which he and I feel are not MG connected or Alpha-1 connected he tested me for lyme disease. {don't know the results yet}

I have an underactive thyroid {due to the thymectomy and partial removal of thyroid tissue} so I too am very glad he is checking that.

I am seeing my primary care Dr and they are setting up a stress test due to the shortness of breath and chest pains.

Sadly when we have something wrong like MG it is hard to tell what is what, add another illness to that and it's a crap-shoot.

If your Dr. doesn't make you feel safe than it is time to find another and don't take the "nothings wrong" DX, because to me, Dr.s say that when they are to lazy to really find out what is going on.

Ask your Dr. to think outside the box, ask him what he would do if it was his son sitting in the chair and not you. Please continue to keep us updated.

Annie, I wasn't sure if you knew this, but a Neurologist can do an EKG, and other testing on the heart for things like Dysautonomia, and any other heart problems involving a neurological disorders.
My cardio is older, and I'll tell you, he knows his stuff. He use to be the chief of cardiology at a very prominent clinic. So I guess I take a little um-bridge with the age thing.
Tyson, I think maybe you have to wait and see what your blood work shows. Or, you may want to ask to see another neuro in the same clinic, they do that all the time. In the mean time, if you should have anything showing even the slightest of problem with your breathing, call him, and if it gets worst, go to the nearest hospital.
I was also thinking, it is possible that he does see a difference. I remember when I was first starting certain meds, I couldn't see the difference at first, it came about in a subtle way. My family could see it clearly, but I couldn't. It's just a thought, and a possibility.
But if you're feeling that uncomfortable, as to see another Neuro, Duke has plenty from which to choose.
I'm curious as to why you think he just wants you for research? Just an encouragement thing here, I noticed an improvement with in 3 weeks of starting Cellcept. I felt it quick, not everyone does, but I did. Had to go off due to it being bad for those of us who are suffering with Kidney disease.
Best of Wishes to You
Love Lizzie

Tyson,

you went on a ski trip, walked in the airport, and then went running the next day, without ending up in the hospital with a crisis, and just feeling a bit more weak, and having some more shortness of breath, when climbiing steps.

maybe you want to be fully recovered and that is understandable, and you would have wanted your neuro to pull up his magic wand and make you even better, but it sounds like you do have some improvement, even if less then what you would have wanted it to be.

and I can understand your dissapointment, because you are well enough not to require any intervention that could make you better, but not well enough to be really able to do everything that you want. and also having some improvement makes it even harder for you and those around you to understand what your limitations really are. and in a way it can paradoxically make you feel for a while, even more lonely, when you should actually be feeling better with yourself. that's another one of those "crazy" things about this illness.

it makes sense to find out why you are having a relatively high blood pressure and pulse. but to me it sounds that your neuro is quite dedicated and wanted to see you in his office when you reported those symptoms to make sure that you are all right.

think about this way- you may be gradually getting better, for what ever reason, and may be able to do more of what you like (even though not all, and still need to prioritize), and you have someone you can call in case you are doing less well, and who will be ready to see you within a day. (at least so it seems for now), so why not just see how you do within the next few days/weeks before you can decide if you can trust him or not?

maybe you will both be able to find out together that indeed you are starting to get out of the woods? or maybe ( I hope not) when he sees you again, he will think you are not as well as he thought. either way, you will find out sooner or later if he understands what is going on with you or not.

Lizzie, I'm 51 years old. It's not ageism, it's experience. And Tyson is a guy, so it's probably different. Older men often do NOT treat women well in the medical setting, for the most part. I take offense at doctors who do not look at a situation objectively just because I'm a woman. And I know that any doctor can order a test but neurologists aren't qualified to analyze those tests fully. It's like spinning wheels. I wouldn't want to see two doctors for one problem, just my opinion. It wastes time and money. But if Tyson is comfortable (sorry, 3rd person again) with it, it's his choice. I'm glad you have a doctor you can trust. I have lots too, as we've talked about before. The problem here is that I'm ultra concerned about his situation and what could be being missed.

Annie, I'm sorry if I'm not explaining this well, so I'll try again. Actually yes, a neuro can analyze a cardiac test. Neuros are needed often after a person has a heart attack or stroke. As a heart patient, I can tell you that a neuro is indeed a useful tool in heart health. And although they are Neurologist, and not Cardiovascular specialist, it's important that they are educated in Cardiac issues.
For example, I see a Ph Specialist who is not Pulmonologist, but a very well known PH doctor,in fact third specialist in the world. He is a Cardiologist. Pulmonary Hypertention is a heart disease that affects the the lungs, or vice versa, so both a Pulmo , and Cardio has to be educated in this area. Same thing with Neuros and Cardios.
I wouldn't know this if I didn't have to have to go to them both for cardiac problems, this is why I asked if you knew.
I'm 45, and I've had my share of being treated a certain way cause I'm a women, but I have to say, the age has been all over the place. LOL it's not just the oldies, but the youngeons, the in middle agers.. a butt cheek comes in all ages LOL...etc. Boy Tyson, hope you can figure all this out, don't want to confuse you.
Hope I've explain this well, Sometimes my mind works faster than my fingers. Love Lizzie
P.S. Many times a neuro will order tests, and then refer the patient to the specialist. My neuro first did some tests, and based upon those tests referred me to the appropriate specialist.