Hi everyone - I am sorry to pester and I know I have probably asked similar questions along my way but I am just trying to piece everything together and work out my next move and could really do with your help/thoughts/advice!

I have had a reasonably good couple of weeks (which has been lovely!) its been a long road back from my flare up in February and I have been taking it slowly. I wanted to give the Doctors battle a break and just do my best with Mestinon as they don't seem happy to offer me anything more with having no tests to back up my Clinical Diagnosis...but I feel like I am on the verge of going back downhill and may have to reconsider that decision! It was half term last week and I had my girls off with me, (full of colds!) and whilst we didn't really do anything, I did end up arranging a couple of playdates and a trip to the park on top of what I normally do so, (as depressing as the thought is that something so simple could have had this effect on me!), maybe that explains things?! I hoped a couple of days rest now they are back at school might nip this in the bud...but so far it seems to be taking it out of me more than I hoped and I am having all of the symptoms I had before my last flare up

I wanted to ask what your honest opinion is on these symptoms - are they MG or the signs of a worn out body...or should I be looking at something else to explain this??

Here are the symptoms - I would be so grateful for any thoughts on what you think about them??

Headache - pressure type headache (similar to when I had viral meningitis) relieved by supporting head. Light and Strong Smells almost "go through" me and I want to avoid both!

Neck also aches later in the day.

Pale (Deathly at times!)

Loss of appetite

Nausea

Chest pressure and feeling of more rapid heartbeat on standing/moving around (thankfully it is pretty mild at the moment!) - relieved a little by sitting but lying down is better and a huge relief - being upright feels like a huge effort and the sofa is my friend!!

Blurry vision - worse than usual and reading/computer/watching TV feel draining/an effort and make the headache worse!

My Legs are always easily tired and become heavy with fluctuating problems walking, but when I soften my knees out of a locked position my thighs shake taking the weight of my body. They don't seem to give out on me and do actually hold me up but they shake and become uncomfortable/achey under the pressure? When I walk it is like there is no power in my legs??

All of this impacts on the Typical MG symptoms and makes my facial weakness worse. Since my last flare up I struggle with losing my voice the more I talk also.

Another point that I am struggling with is that Mestinon was a miracle for me for 3-4months but now there are times when it works and times where I'm not sure if it makes me worse!! I have gone down from 90mg to 60mg 4-5 times per day and while the dose works it helps my facial weakness but when it wears off I sometimes feel worse than before?! I don't know, I am just confused at the moment as to what to do for the best?!

I am frustrated and confused - I had just started to feel like I was starting to actually do a little more after my flare up and doing a little more, I was back at work 2 mornings a week and hoping to make it 3 mornings thinking I would soon be back to my 4 mornings a week (which I am meant to work!) I know this thing has its flare ups and I thought I was managing well but now I see that is probably because I've been doing very little! I feel torn - I want to get back to work and was trying to prioritise my energy for that....but then I have 2 young daughters who I am barely able to take anywhere/do anything with, and my boyfriend and I haven't had a night out in over a year...and I haven't seen my friends for longer than that!! I feel guilty wherever I turn and the realisation is hitting that mestinon isn't the miracle it was at the start and maybe I need to either write to the Neuro and plead my case...or go to my GP and see what they suggest...or push for another Neuro and get back on the merry-go-round all over again! UGH!

Sorry to rant and waffle on but I really am left wondering what is going on and what I should do! I feel like I am left trying to work it all out for myself with no real support from the medical profession!

Thanks everyone x

Go to the doctor, urgent care, or the ER. Some symptoms you are describing are potentially dangerous. It's time for a doctor—just go.

There's no way to tell what is going on because we aren't doctors. Even if we were, you have to be seen, examined, and have tests. Make sure they check your O2 because when the pulse goes higher with MG, it means that you might not be getting enough oxygen to your tissues.

I hope you'll be okay.

Annie

Thank you so much for your comment and advice. I wrote to my Neuro giving him one last chance...NOT that I am holding my breath on that one!! I also called my GP but he is on holiday and I can't get to see him until next week!! He told me to focus on resting and that we will intelligently sit down and talk this though to find a plan when he is back...he said I could sit in a room with 12 Neuro's and they would all have a different opinion on whether I have MG given my negative tests....which I do agree with! He says I am a victim of the system, a system the dr's themselves create (not quite sure what that part meant!) and its not fair to be lead up the garden path with a diagnosis only for the Dr to back off when the tests don't show what they want it to! He says we should perhaps try being less concerned about the labels and more concerned with getting me functioning...which is exactly what I want...but I'm not sure what he will be able to do/is prepared to do to get me there??! Again....I am not getting my hopes up!

What you say about O2 levels is something I have wondered about along with Low Blood pressure...but my hate of the Doctors visits always has my BP up and so it never really shows!! I have been looking it up and there are some papers linking autnomic dysfunction with it with MG written 2013/2014.....but also lots of people struggling to be diagnosed and palmed off being told they have anxiety - an anxiety about being upright?? That's a new one on me!! lol!! I brought a new finger Pulse Oximeter - my resting pulse is around 65 and sats seem to bump around in the 80/90's....but when I stand it struggles to keep a reading and the bpm looks to drop and then jump up to 90's and sats drop to the 60/70s?! I'm getting a cuff BP monitor to see if that can give me a clearer reading...as this doesn't seem right?!

Right now, the sofa is my friend (again!) and I am resting as much as possible and hoping to be back on my feet again soon Thanks again! x

You seem to have a lot of knowledge concerning MG. I am having my first of 5 daYs of IVIG treatments starting tomorrow. Was diagnosed back in November. Now on 180 MG a day of Mestonin and 180 MG of Mestonin timespan at night.
What should I expect tomorrow with my first treatment? Any suggestions or recommendations when it comes to the possible headaches etc.? Anyone with advice please comment.

Drink lots and lots of water then some more the day and morning before. You may want to ask the nurse to make the rate slow for first treatment. They should check on you every 15 min during first treatment.
Mike

Thank you! Really did not know what to expect since this has all been set up so quickly. I will let you know how it goes. Thanks for your input!
Debbie

It is really not bad. My treatments take 2 hours but yours should be longer until they figure out your rate. The infusion center where I go have nice recliners, each chair has a TV, they have snacks and provide lunch depending on the time. Be sure to call about 30 minutes before you arrive so they will have the medicine ready which will save you some time. Hope all goes well.
Mike

Thank you for the information. Today went very well. The facility was just as described and everyone was very nice. I learned that they actually have several people with MG that they serve. Today took around 3.30 hours total. They like to do a very slow rate the first go round. They administered 2 Tylenol and a benyadril then waited about 20 minutes before starting the IV. No side effects apparent and ready for day 2.
Thanks again!
Debbie

That's great news. I learned something new today. Went to see my neuro-muscular Dr and told him I had a 100% artery blocked in my leg. He said "NO IVIG FOR YOU" so now I got to decide on a by-pass. Need to discuss this with my regular neuro. I now wonder if all the IVIG's caused the blockage.
Mike

I had read where blood clots are not uncommon but a total blockage?? Are they going to try blood thinners?
I had a small reaction yesterday so they lowered the rate today. All seems good.
I sure hope that they can do something other then surgery. I wish you well! Keep me posted.
Debbie