New diagnose - GMG

[Polly-S]

Was diagnosed with FM January 2020, never got a follow-up because of COVID-19, just increasing the medication from GP. Previous winter 22-23 was BAD!!! Didn't leave the house, almost all the winter in bed. Horrible pain, itching that hurts, shaking, and on and on...Till began to slur words, chock on any food and liquid. Cant breath, like anxiety attacks, but worse- still was thinking its anxiety from the FM.When my mouth fall on the left side I finally contacted the GP.

This time the service was very good, straight away special tests were requested and sent to Oxford laboratory and referraltoNeurology. 6 weeks later received a call from the GP telling me they have changed my referral to Urgent.

And here we started again, no proper communication between the GP and NHS, I can confirm that the GP sent the Urgent request but something happened on the way...

So I waited 8.5 months for the Neurology appointment.

During this time - worse and worse 😞

No day without checking, breath stopping, pain, etc.

Asked for the test results and found that I have 11 times higher than the maximum of something in my blood, which indicates MG - myasthenia gravis.

Really scary thing 😬

My mental health got downfall too.

Finally in March saw the Neurologist and he made me take different blood tests, MRI, CAT scan, Ultrasound, The Electric thingy- don't remember the name,Some other tests at Speach department, Gastro camera... maybe something else I am forgetting .

All above in 4 weeks... Imagine how I was going there , crying and having someone to hold me up... Sooooo much pain.

Exactly 4 weeks after the 1st appointment got the official diagnosis Generalised Myasthenia Gravis (+ Liver + Ulcers, but not serious).

On steroids - small "devil pills"and some other shitty medicines but, here is the kick.

2nd day after started the new medicines I woke up straight, no pain, no itching... felt reborn!!!

I forgot wat it is to be pain-free even for 15 minutes!!! Its worth it all the side effects!

Now I have good minutes or hours, depending on pacing, and there are bed days- I know that they are FM related.

The point of all of the above - maybe its worth it for some of you to check MG symptoms and talk to your GP?

Last 4 years I got sick of hearing - its your FM, we can't do anything... and they don't even listen!!!

Also , book 2 appointments with the GP - tell the admin that you need to talk about different things and they HAVE to give you that - my GP told me to do that trick.

Don't give up!

Apologies for the long rumble above , hope it helps someone 🙏

[Smilesalot]

Thanks Polly - S..I'm so sorry you have had constant suffering 😢.

I got sick of things being blamed on my fibromyalgia so I disengaged from the health services. Not smart but I needed to do it.

How are you now?🤔

I hope you have the help you need hun, Dawn 🤗

[Polly-S in reply to Smilesalot]

Tnx Dawn 😊,Definitely better now, when at least 1 condition is treated.

Again, I can't believe how much we degrade with the pain related conditions, we just started existing, not living.

Someone posted about research for FM and suicide. Sadly, if you don't have family/friends support and you are on your own...

[Smilesalot in reply to Polly-S]

Yes I get it. It was a stark read. I'm so glad you are doing much better.

I feel like I just exist most of the time 😶. My friend and carer is 😠angry that I can't do much. I can see the resentment right there. And I don't know what to do about it. I feel so guilty. Sorry for the sudden blurb😢

You make sure to remind yourself that you are someone hun hugs xxxxx

[Yassytina FMA UK Volunteer]

Thankyou for posting it is very informative, sorry you had too have such a long wait 🙁we know we are going too have bad days or bed days for sure, but if we can get good bits in between that really does help us feel better. Personal experience and reading members posts, we do have too keep pushing too get heard . Our NHS really does need boosting now and although we are not allowed too talk politics here I hope who ever wins the Election will look closely at this. Take care of yourself x

[Polly-S in reply to Yassytina]

I am not political person, at all! My hubby is too much invested in all kinda , local and international, so he kinda turned me off politics for life 😄And NHS is much better now, just to improve the communication between different hospitals and with GP.

Yesterday had an appointment and the consultant wasn't able to access some of the results, because they were made in a private hospital, but I was there by NHS referral, was bizarre...

[Gigiruth]

Hi PollySounds like a rough ride to get there but good news you are feeling better.

We do have to push for other tests. Often FM is blamed for much

Thanks for posting

Gigi

[Longtimer]

Hello, glad you are improving, what you have experienced has rung some bells for me! I have been for many years on steroids, now 5 mg for Polymyalgia, couple of years ago had PET scan, showed no inflammation, so like many on here told it must now be Fibro......I have extreme fatigue, pain, tremors, always losing my balance/dizzy.....GP ordered MRI brain scan, it came through quick. GP rang to say I needed to go to Neurology, because of swelling in the brain, but there is a 12 month wait!.....they said they would send me to "Older Persons" clinic.(I'm 72)...saying they would fast track me. No chance! the doctor there said your cholesterol is 6.2 so it must be that! ....seeing my own GP on Monday, if she dosen't refer me I will go private, if only to put my mind at rest!......I have been convinced all along that I still have Polymyagia because if I try to lower the steroids I am flooded with pain, when Fibro isn't supposed to respond to steroids!!

We battle on!

[1499]

Thank Goodness Polly you now have a proper diagnosis, as reading your terrible symptoms I knew there must be something other than fibro going on with you, just sad you had to wait so long suffering like this to get seen by a Neurologist when you had an urgent referral!

Hopefully life will be a bit better for you now, Fibro is bad enough without all the rest which you have been through your speech getting affected which I felt was definately not a good sign and the other bad symptoms. Hopefully your meds will keep you stable. Wishing you all the best take care! Xx