Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone-I hope you are all having a good day :)
I just wondered how you all deal with the waiting for tests/diagnosis?
I had decided to just forget about everything while I wait the 2-3 months for my first muscle/nerve tests and try to just enjoy each day...and for 2 weeks have been doing really well, but now I'm simply fed-up! Hopefully it's just a bad couple if days (or hormonal!) but I really struggle to deal with not knowing what (if anything!) is wrong with me!!
My life has reduced to just making it through work and taking care of my children and house. My exercise regime is almost none existent apart from the odd walk (I used to run and work out 3 times a week at least and walk at weekends) my social life is zero as I don't really want to go out and meet new people with my facial and eye droop! I have good friends who come to see me but I feel like I can't plan anything with them or look forward to anything as I just don't know how I'll be feeling and don't even know if I can have the peace if mind of an actual diagnosis to explain/justify it!!
To make matters worse my biggest fear is being told (again!) that there is nothing wrong with me, so much so that the relief my good days and periods bring me is short lived as I fear I will never get to the bottom of it if my symptoms improve too much - how bad is that?! I feel so awful thinking like that!!
I have so much to be grateful for and remind myself how lucky I am to see and hold my children, to walk with them and play a little when I can and that I have good friends and family who are as understanding as they can be....but I just feel like I'm on a merry-go-round of feeling better and feeling worse but never actually getting anyway...my inner control freak is very frustrated! Haha!
As I have said before - I think you are all amazing and i would really appreciate any tips you have!!
Ps-I have phoned my consultant's secretary to politely enquire about my appointment, she was very nice and apologised that as I am an out-of-area patient I am yet to be registered on the system and the clinics are very booked up....so it doesn't look like there is much chance of the waiting list being shorter than expected!
I just wondered how you all deal with the waiting for tests/diagnosis?
I had decided to just forget about everything while I wait the 2-3 months for my first muscle/nerve tests and try to just enjoy each day...and for 2 weeks have been doing really well, but now I'm simply fed-up! Hopefully it's just a bad couple if days (or hormonal!) but I really struggle to deal with not knowing what (if anything!) is wrong with me!!
My life has reduced to just making it through work and taking care of my children and house. My exercise regime is almost none existent apart from the odd walk (I used to run and work out 3 times a week at least and walk at weekends) my social life is zero as I don't really want to go out and meet new people with my facial and eye droop! I have good friends who come to see me but I feel like I can't plan anything with them or look forward to anything as I just don't know how I'll be feeling and don't even know if I can have the peace if mind of an actual diagnosis to explain/justify it!!
To make matters worse my biggest fear is being told (again!) that there is nothing wrong with me, so much so that the relief my good days and periods bring me is short lived as I fear I will never get to the bottom of it if my symptoms improve too much - how bad is that?! I feel so awful thinking like that!!
I have so much to be grateful for and remind myself how lucky I am to see and hold my children, to walk with them and play a little when I can and that I have good friends and family who are as understanding as they can be....but I just feel like I'm on a merry-go-round of feeling better and feeling worse but never actually getting anyway...my inner control freak is very frustrated! Haha!
As I have said before - I think you are all amazing and i would really appreciate any tips you have!!
Ps-I have phoned my consultant's secretary to politely enquire about my appointment, she was very nice and apologised that as I am an out-of-area patient I am yet to be registered on the system and the clinics are very booked up....so it doesn't look like there is much chance of the waiting list being shorter than expected!
I said all that to say, most of my tests came back negative. Over the years I have come to realize that test can only do so much, and I know [honestly and without emotion] if I am feeling bad or not. Many of my tests are now positive, but I lived with the problems for years before it showed up on a test. I can't really blame the doctors, they can't hardly treat what they can't see, but I did finally find a doctor who was willing to take the clinical evaluations as much as the blood and muscle tests.
Please don't set all of your hopes on the upcoming tests. If they do show a problem, then it gives you something to work with and you can know the enemy. But if they don't, you still know how you feel and what you go through. There are no absolute test for MG. Talk to your doctor about the symptoms and ask them for their clinical opinion regardless of if they want to give you an official dx or not. I have heard somewhere that the average dx for MG can take from 2 to 8 years.
I hope you do well, and I do hope they give you some answers soon. The unknown is the most frustrating part for me [from a fellow control freak!]. But if they don't, just hang in there. Maybe ask for a trial of Mestinon. It can help within 1 day of use, it only stays in your body for 4 hours or so, and has no lasting side effects that I know of. I started out at 30mg every 4 hours, and felt like a new man after 3 or 4 doses. It did help with the clinical dx when the blood tests came back negative.
Again, I hope you do well and can enjoy the good moments. Budget your energy throughout the day.
Steve
Are you on cancellation list. I remember one time, for something, if I called on Mondays, I was able to fit into cancelled appointments.
If you start feeling worse in any way....call and tell them that ...that may help.
If you feel like making an excuse ..apologize and say...I am sorry I am just so anxious to get treatment since I understand treatment can take a long time to take effect.
Remember sometimes the squeaky wheel gets the grease.
Can they send you paperwork to fill out and possibly get you registered before your appt. and thus maybe get on a waiting list for cancellations? And ask if there is any way to speeed things up not because you are impatient but because you need help sooner rather than later.
I had (and still have) so little knowledge of how medical offices operate, and am just learning to think outside the box to get what I need. Like an MRI that was scheduled and I had to keep cancelling because I couldn't even ride in the car -- finally thought to ask if the insurance covered any other places and located one that let me call on a good day and ask about any cancellations. If my doc's office had let me know I didn't have to have it done at their medical center, it would've been done two months earlier!
First, my diagnosis came kind of by accident. (Long story short, I over heard the neuro that I work for giving info to an MG patient and something really hit home. I asked him to evaluate me and that was that.) So because I wasn't anticipating the testing or the diagnosis I really had no information on MG or the consequences of a + / - diagnosis.
Second, My neuro said 2 things that put me at ease right away. He said that he believes me. He also told me that given my detailed history, he was already convinced that MG is it. He specifically said, "I don't care what the tests say when they come back because everything clinically fits with MG".
I know that you desperately want answers but for many people with MG they don't get any answers from the diagnostic studies.
Nobody likes the unknown but I've learned that some things you just have to let go of for your own sanity. Obviously, you aren't going to forget about it but try to focus on doing things that will conserve your strength. Meditation can be incredibly helpful too.
I wish you good luck and improved health to come. Please keep us updated on what the tests show. Just remember that even if all of that is negative you may still have MG. No matter what the tests say, we will all be here to support you. Hugs!!
Because I've worked in a medical offices for the last 20 yrs, I can tell you that the greasy wheel does NOT always get the grease. However, you'll never know if you don't ask so ask every question that you can think of.
Here are some suggested questions:
*How many MG patients has your neuro has treated in the past.
(If he/she has very few patients and very little experience with it then he might not realize exactly what you are experiencing. As mentioned in the other responses, make sure that the doctor is aware of ALL of your concerns so that can push for tests to be done sooner if necessary.)
*How confident is he/she in the MG diagnosis. If they are on the fence ask them what specifically makes them question it.
*Is it possible to try mestinon while you are waiting for your appointments. (They usually want to make sure that the EMG is accurate so they'll delay starting meds to avoid that. If that's the case then ask for a three or four day supply which will be enough to see if you respond to the medication but won't last long enough to interfere with the tests.)
Even if the doctor is frustrated with all of the questions you will get more information which may help ease your mind. I hope this helps some. Again, good luck to you.