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 anywhere...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!

Thank you all.x

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!

so sorry you are in limbo - i've been there for 2.5 years ahhhh! it's awful, as I feel like if i had a name for this whole ore deal, then I could deal with it mentally much better.. I have small children, work and try to maintain a home, so I know how it is... its hard - physically and mentally! I go through phases where I am thinking - Ok lets figure this thing out.. and others where I am just over being poked and prodded and wasting time at a dr's office, as it never seems to get me anywhere.. I also used to work out all the time, be a runner, surfer, skier.. so it's a big change.. and hard to deal with mentally.. when just walking and swallowing can be a challenge, much less making a crying face to get upset about it all (sometimes my face wont' even allow me to do that ahhh)..

hormones make my physical symptoms much worse (do they you?).. good luck with it all, I hope you find answers soon!!

So sorry you are both struggling. It does not get much better after the diagnosis. I am still struggling for an effective therapy. I had a bad reaction to the IVIG and this heat has done me in!! Seems like everyone is having a bad MG week.

I hope we all have a better weekend,
kathie

It's hell in limbo....

Hello Unsure... Oh how I wish I had some great words of wisdom on the subject of not having a name for what ails you. How does one manage the unknown? It would be damn difficult!

Try not to be too hard on yourself. Who wouldn't feel the frustration!? What can you do about it? Well, not much more than to carry on. You know you'll get there, but the wait can be painful!

I read an article a while ago that said, "...waiting for a diagnosis is more stressful and causes more anxiety than the diagnosis..." If I may borrow a term from the young people...DUH!

The late Jean Kerr, American author, went to 26 doctors before she got a diagnosis. She had MG. I don't know that I would have had that tenacity.

We are experiencing the same wait times here. It's global, and given the demographics, it will be a challenge for quite some time.
What is helpful to me is to rather than think,..."What if..." I'll say, "What's my plan b?"

A man on a thousand mile walk has to forget his goal and say to himself every morning, 'Today I'm going to cover twenty-five miles and then rest up and sleep.”

―Leo Tolstoy, War and Peace

Also have been waiting 6 months + for a diagnosis. Had EMG, Repetive Nerve Conduction test & numerous blood tests with elevated creatine levels & ANA positive. Which the Neurologists told me there was nothing wrong with me and I need to see psychiatric help. Symptoms include muscle fatigue & weakness, ptosis right eye, hard to talk, weight loss, drooling, head drooping, hard to chew/choking, poker face, blurred vision, slow shuffling gait, tremor right hand, vivid dreams every night. Went to a rheumotologist who said it's not from depression. He did send me for a muscle biopsy which I just got back from today. He said if nothing shows up he'll send me to a muscle disorder specialist.
Yeah it sucks not knowing what's wrong, but you don't have a choice but to keep doing what you can and keep searching for the answer. It helps finding a doctor that believes you & will help you to find the answers. In the meantime do just you can do & try to rest when you can.

Hello Slashman48, Have you ever worked with chemicals, say, landscaping/weed spray, or pest control--anything like that?

I used to treat animals with organophosphate chemicals all the time to cure them of mange and other dastardly things. Now that I teach anatomy, I breathe formaldehyde fumes. I wonder if either of these has been my demise.

Celeste, I had to look up, "organophosphate"... Of course, I don't know,
but it sure fits. Chemicals can tease out MG. I can hear some soldiers yelling, "Yep!"

Mange?.... Good for you! I couldn't handle the frog in the 12th grade...

Have worked with some chemicals. Worked with methylene chloride about 30 years ago for about 6 months but quit because it was giving me headaches from the fumes. Also was a welder for about 20 years, welding aluminum, stainless & galvanized. Currently drive equipment ( bobcats, front end loaders, etc.) for the last 15 years, so am around diesel fumes a lot.

I am with you, limbo.... A three and a six ur old and somedays can't move... I have been on cellcept for almost a month...just praying it kicks in and helps....