I agree, first of all the unknown is so tough i think.... My mind can't stop thinking or trying to figure out what the heck this whole thing could be.. I can never turn off my investigative side into all of this mess..
Second of all - it is hard I think especially in neurology with everything is so subjective to the examiner - one neuro would tell my I have diminished reflexes, the other would say they are brisk.. one would say I am weak, the other would say "it's all anxiety" haha.. it is SOOO frustrating!! I think I saw 4 or 5 neuros before going to the neuromuscular clinic at the university,.. and then saw 2 at my first appointment and when I was admitted might have seen 8-10 more!!! NONE of them could figure it out.. but thankfully after months and months they did admit me when I crashed and try IVIG..
I was also a very active person (and also a dancer for 15 years)!! had been a high risk pregnancy for 2 years (had babies back to back).. and was thrilled to be able to "get my life back" and get back to running and working out.. ha.. joke was on me I guess.. It is hard when I think about taking the kids hiking, skiing etc (I was also a surfer.. but would be afraid I would drown at this point).. so I have no idea if I will be able to participate with the kids in these things.. and it breaks my heart, it is so hard just not knownig, or fearing the worst.. but
I was so sick, all I could do is walk a few steps and would have to lie on the floor, couldn't hold silverware, my kids etc.. No matter how hard I tried, I coudlnt function much at all.. IVIG changed all of that.. I am still a long way from what used to be normal, and am just thankful for this new normal (After a Dr telling me it could be ALS.. I am VERY VERY thankful each day that I am better off than if that is what I had.. )..
I hope you find some answers, and they try some treatments on you.. it is rough to not know, but to also be told it could be in your head.. as if anyone wants to spend my free time at a Dr's office being poked and prodded! Ick!

wild_cat, Yes, it is beyond overwhelming that your entire future might be in the hands of a complete stranger. I hope you have a neurologist who is aware of this "power" and uses it wisely.

Your symptoms sound so very classic. Have you set yourself up for a good appt.? Have you written a simple "log" of symptoms, when they happen, etc? Sometimes it helps for a doctor to see symptoms than to hear us say them. Then they are also there as a permanent record.

I've had MG my entire life but only diagnosed at age 42 (misdiagnosed with lazy eye at age 10). I have gone through so many phases of adapting my life to this disease it's unreal. But that's the great thing about being human; we are adaptable. We might get there via kicking, screaming, crying, rocking or any other mode of coping but we get there.

It does help to really look at the phases of grief and know that they are useful, no matter what order you go through them or what ones you skip over. Hopefully you'll get to the diagnosis and treatment phases soon.

The brain is truly amazing. You might get a high from endorphins and oxytocin from exercising but you can get the same from playing music while doing dishes. And this might be borderline inappropirate to put here on this particular forum but there are people who can have an "O" while sleeping, with no activity other than brain activity.

There are some amazing leaders in the field of energy and medicine. We are each a field of energy, one that is largely untapped. If you can do some reading in that area, it really does help. For example, I try to focus every day on gratitude, love of what is around me and what I can do and that my mind is a playground I can hop around in despite MG. I meditate (which I've been taught how to do well), which really keeps me centered. I stay away from any "artificial" energy as much as I can, such as electronic things because they emanate electronic fields that can be harmful to us. If you don't know much about this stuff, it might sound like I'm getting off topic.

I do hate that I can't do what I used to and I still go through phases of anger over it. That's really normal! But then I get "real" and deal with my life the way it is and not the way I want it to be. But you're still in the diagnosis stage of all of this. Cut yourself a break. For whatever reason, you're having to go through all of this. And while it sucks, I do believe we all go through what we do for a reason.

You can't compare your life to anyone else's with any degree of success but, sometimes, it does help to look at people in NJ or NY who just lost everything or people who have ALS. But that's really just a coping skill. After you get a diagnosis, if you can see a psychiatrist or psychologist and get more coping skills, it really does help to handle an illness. Having one truly challenges you on a daily basis.

I hope you and your neurologist can work together to figure it all out. In the meantime, do something really nice for yourself. Pamper yourself. Let the expectations go and just enjoy the moment.

Annie

Oh! Thank you one and all! You have truly helped me to feel more positive! I felt a bit of an idiot complaining like that, but I'm so glad that I did, because now I can move on from this point...

SoftTalker, you are spot on with your ideas! I subscribe to art films by post and watch 2-4 a week. It's an excellent service and really keeps my brain interested! I had been doing some art related journal publications this year and am waiting to hear on some editing. I'd like to do some more but my research is practice-led and the financial and physical restraints of my situation make it difficult for me to create another piece that I could write about. When I first got ill and I was still doing my PhD I couldn't perform so I formed a dance company and directed instead. It was something I never would have had the confidence to do had I not been in this situation. We made a film of our performance that recently got screened in Norway.

I felt quite let down by myself at the moment because earlier in the year I was doing a lot better and took a job in Iceland teaching piano. It was only 20hrs a week and I'd worked there before so knew the language and have very supportive friends there. It is a place I love and the way of life is second to none. I could spend the rest of my life there. But my health let me down and I found myself declining in a place with little medical access and had to return to the UK as I couldn't continue in my job. I'm completely gutted about this. But I also very incredibly stupid I thought I would manage. Here where I am now I manage because I rarely leave the house and can work/rest as I need. I must have been completely blind to think I would cope with the job.

Annie, thanks again for your advice. I have been working on a list with a member of this forum to take to the neuro. I think I'm going to try and prepare some response for questions too because I'm very forgetful. I have a friend living nearby who is a psychologist and also has ME. She is very understanding. I know my situation could be a lot worse. However, one of the things I struggle to manage is the fact that my limitations are constantly changing. It really confuses me that I can do one thing one day and not the next. It also makes others doubt me, which is difficult too. I just can't bring myself to stop playing the piano – it's my whole life and while I let a lot of the other things go it's like a lifeline. I feel my ability to play is slipping through my fingers.

It's such an irony that I have built my whole career on muscular activities – music and dance – only to be faced with being able to do neither! But I am glad that it has taught me to value things in a different way and have more time for myself and others.

I am leaving the house today for the first time in two weeks so I hope my body will cope as I look forward to seeing the autumn colours and getting a change of scene.

Thank you for being here.

wild_cat

Hi wild_cat

I remember basing all my hope in a single neurologist´s appointment - twice!

One was a bad one and occurred in the right place at the right time...
One was a good one and occurred in the wrong place at the wrong time....

If you are already traveling – perhaps scheduling a plan B appointment with a private pulmonary specialist wouldn´t be a bad idea

Anacrusis

Unfortunately I think it is traveling that has made my symptoms so much worse. As it is I am reliant on my parents to travel with me, which means them taking time off work. I can't fly which makes the journey itself over complicated as I live in a remote area. I find even going in a car for a few minutes can make my symptoms very much worse and it can take me days if not weeks to recover.
I have my respiratory tests on the same day as my neuro appointment so hopefully that will give some answers. If not then I have the plan b as you say!

But now you have me worried on how you will get to your appointment.
How far is it? How will you get there?

Oh! Thanks for your concern My parents will drive me to the appointment (it's about two hours drive away). We're considering traveling the day before and staying overnight somewhere so it's not too much all at once. At least there is one thing guaranteed; I'll be a complete mess after traveling so at least they'll get a clear picture of my symptoms!