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Just dx Myasthenia Gravis

(32 Posts)
SimplySteve Thu 04-Oct-18 11:46:19

Have had eye problems for over a decade leading to 5 operations, and likely more to come. Then muscle weakness in arms and legs, then issues swallowing.

I've been told this morning that I have the autoimmune condition Myasthenia Gravis. Whilst I'd done my own research, and not particularly surprised, I am shitting myself.

If anyone has any words or advice I'm all ears (and my ears are pretty big). Just shocked really.

MGproblems Fri 05-Oct-18 19:00:58

Hi Steve,
I’ve name changed but wanted to say hello. I’ve also recently been diagnosed. Are you on medication? The charity Myaware really good.

CrazyDuchess Fri 05-Oct-18 19:03:46

Hello - I have been diagnosed for over 10 years now. Being scared is normal but there are some good treatments that help alleviate your symptoms. There is a great FB group for support. And more than happy to answer any questions x

SimplySteve Sat 06-Oct-18 08:35:23

Not on any medication yet. It's been recommended I see my eye consultant first (as problems started in those some 15 years ago, and old records I looked through indicate eye issues from early age). My eye muscles will be tested and likely 2-3 more eye ops in near future. I'm looking at March to see the relevant neurologist regardless .

Some questions!

I'm having problems swallowing, liquid, pills, food. I try to swallow and either nothing happens, or stuff gets stuck and I gag. I cough/choke pretty much every time I eat/drink.

Rather worried about breathing problems tbh.

I was dx with M.E, Fibro and PTSD 10 years ago. GP thinks these diagnoses are still accurate, but conceded Myasthenia could well have slipped through the cracks.

Thank you for replying, I feel lost at sea, emotionally drained. With other medical issues ongoing too (I have an "interim" dx of biliary microlithiasis (and have no gallbladder)).Waiting game.

Likewise, if you need to sound off just pop me a message smile

Have you had/been recommended a thymectomy Crazy?

I shall go have a look at MyAware!

CrazyDuchess Sat 06-Oct-18 14:12:33

I had a thymectomy over 4 years ago- didn't really make much difference tbh for me.

All my swallowing/talking/choking issues have been resolved by mestinon- it's been a life saver. I think you'll start to feel physically better once you start medication

I couldn't tolorate the steroids (induced psychosis) but have been consistently on mestinon and Azathioprine for a few years now and live relatively normally smile

It seems rather ridiculous to leave you until March next year for treatment - I would question the rational esp if you are having difficulties swallowing/breathing. That can turn serious pretty quickly.

Which hospital are you being treated in? You can dm me if you prefer.

Also don't neglect your mental health- I have done numerous bouts of CBT and antidepressants to help cope.

Oh yeah - get a medical exemption certificate - free prescriptions will be important!

SimplySteve Sat 06-Oct-18 16:29:25

Thanks so much for the reply Crazy, I'll pop you a pm.

My local hospital is super busy all the time. As an example, I've been waiting to see an Upper GI Consultant since June last year, have been told it will be December and they will do "all they can" to ensure it doesn't get changed again...

MGproblems Sat 06-Oct-18 19:41:13

Steve, are you anywhere near London?

autumnis Sat 06-Oct-18 19:46:46

I am a SLT, specialise in swallowing difficulties and regularly work with patients with MG. are you being medicated? Usually the medication for MG lessens the swallowing difficulties significantly. Sometimes IViG is used.

If you are coughing on everything be very careful. If food/drink/pills go to your lungs, you cough. You could end up with a chest infection or pneumonia. You also won't get the nutrients / hydration etc.

Fatigue is the big factor for MG. swallow fatigue over the course of a meal and over the course of the day. Little and often throughout the day; avoid difficult foods, stick to easy, soft foods, avoid tablets etc.

You need to discuss this with your GP or consultant as it can lead to hospital admission and a tube to feed you if not addressed earlier rather than later. SLT can assess your swallow too.

MGproblems Sat 06-Oct-18 20:26:50

Steve,

Do you feel like you can’t take a deep breath? I have had this for a couple of days. I’m tired with it but they’ve doubled my meds.

I eat 6 small meals a day. I cannot eat until I’ve had my medication (mestinon). I tend to get swallowing fatigue as autumnis said, so I go for softer foods as the day goes on. Soup is usually dinner.

I was told not to mix textures but not sure if that’s the firm advice, @autumnis ?

SimplySteve Sun 07-Oct-18 08:30:47

Sorry for the delay in replying, yesterday was a PITA and I fell asleep in the afternoon and just woke up!

I'm quite some distance from London, I'm in the Midlands.

Hi autumn, not being medicated yet as GP wants me seen by ophthalmology first. I received the appointment letter yesterday, December.

It's so embarrassing coughing every time I eat/drink, to the point I won't eat out anymore. I'm aware of the risk of aspiration pneumonia, it's definitely scary.. Being totally honest I'm skipping a substantial amount of meals, I am drinking plenty of fluids but I have to take it very slowly with small sips. If my swallowing muscles won't play ball it's so frustrating, and I cough even with small amounts att a time.

Fatigue is a massive factor. I was dx with M.E, and Fibromyalgia roughly 10 years ago. I'm essentially bed bound due to the level of fatigue, and pain wracking through my body ranging from severe to excruciating. It's suspected I have biliary microlithiasis/post cholecystectomy syndrome too (my gallbladder was removed last year), am awaiting consultation and an endoscopic ultrasound/ERCP.. I'm very aware that MG doesn't cause pain and I think the dx of M.E and fibromyalgia are additional to the problems that MG is causing. I think I will ring the neurology secretaries tomorrow and see if I can have an earlier appointment/short notice cancellation.

I have some issues with one of the doctors at my practice too. I've been describing symptoms to them for 10 years and I explained the result of an ARA blood test to be told they didn't think I had MG, and now I'm in this position...

I do feel I can't take a deep breath at times yeah, as I become fatigued my breathing becomes rapid and shallow. I've noticed when attending A&E (unrelated to MG) that when my breathing is like this my SPO2 % significantly drops to needing an oxygen mask. My heart rate elevates (I have tachycardia too), and blood pressure raises too.

When I can bring myself to eat, it's soups, ice cream, yogurts, things of that ilk, but as mentioned I'm skipping a substantial amount of meals.

Just want to say a massive thank you again for your replies, I was feeling so alone when I was told the dx. Whilst it's not good some of you have MG also, at least I know other people are having similar difficulties. Sorry for the essay!

autumnis Sun 07-Oct-18 08:51:34

If you were my patient, I'd want to see you tomorrow. It's not normal to be coughing all the time when you eat and drink. You will get weaker and weaker from lack of intake which will make the fatigue even worse. It will also mean if you do aspirate, you could struggle to fight the infection.

Are you seeing an SLT? If so, call them tomorrow as my spidey sense tells me that if I saw you, I'd like to get you admitted to address your care properly.

If not, please make a GP appointment ASAP or harass your consultant. Be explicit. Every time to eat or drink, your airway is penetrating - this means it isn't going toward your stomach. You're missing meals. You're probably loosing weight? You won't be able to take medication in tablet form. You could be on course for a crisis admission to hospital which would be a shame considering something could be done now.

I'm staggered with your symptoms, you aren't being medicated now......

SimplySteve Sun 07-Oct-18 09:32:17

I forgot to mention another symptom too, I have double vision, eyelids droop sometimes. I subconsciously close one eye most of the time too.

SimplySteve Sun 07-Oct-18 09:48:01

I'm seeing nobody at the moment autumn. I've been toying with the idea of going to A&E when heavily fatigued and the rapid, shallow, breathing. The reason I'm considering it is because it would be treated as acute circumstances, and I'd likely see a consultant. Of course, they could just tell me to piss off and wait for my outpatient appointment.

SimplySteve Sun 07-Oct-18 09:52:04

Yes I'm losing weight, I've dropped 18kg in 6 months.

SimplySteve Sun 07-Oct-18 10:06:02

Apologies for another follow on post. I attended my local walk-in centre last Monday with the shallow breathing. I called 111 and they told me to go there. In addition to the breathing I described the swallowing, diplopia and fatigue. The moment I mentioned that I have PTSD the nurse became arrogant and dismissive, telling me I was having a panic attack and that I was using a slot someone with serious issues could have used...

Trust me, I know what my panic attacks are like (I have enough of them), and they manifest other symptoms too (like curling up into a foetal position for one).

I'm seriously considering putting in a complaint, but PALS are utterly useless - when I had surgery to remove my gallbladder, I went into theatre with hospital PJs on, and my underwear. I'd mentioned to both the consultant and anaesthetist why it was imperative my underwear wasn't removed, or if necessary to ensure it was put back on. I came round in recovery and was totally naked. I proceeded to have one of my very worst panic attack's, and am emotionally scarred as a result. I contacted PALS about it and they completely ignored the issue, despite my being incredibly verbose, telling me "it's only a pair of underwear". Still have panic attack's just thinking about it over a year on.

autumnis Sun 07-Oct-18 10:06:59

I really would go to A&E or call an ambulance if alone. Explain all your symptoms. You'd likely be admitted and a neurologist would look at treatment. Please don't suffer alone or think it will get better on its own. Ptosis is the usual eye problem with MG.

autumnis Sun 07-Oct-18 10:09:21

If you go A&E, focus on the MG and the respiratory difficulties, visual difficulties and dysphagia - especially aspiration and weight loss. Tat is a very typical clinical picture requiring help. I would put a complaint in about someone so dismissive. How rude.

SimplySteve Mon 08-Oct-18 20:41:11

Have realised another symptom(s) I've been having for years are likely linked to MG too - double vision, and sudden blurred vision. Something else to raise with the ophthalmologist in December. My GP is on holiday but I'm going to see her when she gets back to see if she can hasten the process.

RightYesButNo Tue 09-Oct-18 18:19:33

Another person with myasthenia gravis here. Just about shite my pants when they told me too, so you’re not alone. I actually have started to have some breathing problems and I try to pretend I’m not scared but sometimes I just want to go in the kitchen and throw the plates at the walls. But not my tea mug - I need that grin

OP - I’m a little confused about what’s going on with your treatment. How did you get diagnosed? By blood test? If you have a positive blood test and you’re having trouble swallowing, you’re beyond just needing an ophthalmologist, and in fact the drooping eyelid is not an ophthalmology issue - it’s a neurology issue.

As many other people have mentioned, mestinon is the medication that can be a big help and could help some (not completely get rid of them, though) with your swallowing problems in short order. If you’ve had a positive test result for myasthenia gravis, you should be seeing a neurologist who can start you on that long before December, I would hope?

Of course, I’m only going on how it worked for me. I see a neuro-muscular specialist in the neurology department.

Please do see your GP though and talk to him/her about treatment sooner than December. It sounds like you’ve really been struggling already and that’s such a long time to keep struggling if the choking is caused by MG and mestinon could make a difference.

Also, someone mentioned thymectomy, and while it’s an option for anyone with MG, my doctor told me to be aware the latest studies are saying you stand the best chance of it working if you get it within two years of your very first symptom. After the two-year mark, it’s very hit or miss if it will help. I don’t want to upset anyone, but OP, it sounds like you may already be beyond the two-year mark so I don’t know how it would go.

SimplySteve Thu 11-Oct-18 00:33:36

Thanks for posting Right.

It was suspected I had Myasthenia nearly 10 years ago, and a blood test was done, this came back positive for MG, but ophthalmology then were not willing to internally refer me to neurology. There is even a note on my file that basically says - any eye problems refer to ophthalmology.

You're totally right, I definitely do need to see a neurologist. It's messing with my head having to wait until December to see ophthalmology. I highly suspect that they will want to operate on my eye muscles again to attempt to negate the diplopia and strabismus in my sight. My health concern is beyond this though. I have some other conditions that massively interfere with daily life. I hope that the ophthalmology team will refer me internally.

I'm awaiting further investigations on one condition, and have two that developed about 9 years ago, and one about 21 years ago. So long as mestinon can resolve my symptoms I will be able to relax and not worry as much. The waiting sucks though. I've read about the various treatments, including thymectomy (seems like it's difficult to detect), and besides the primary job of the thymus is to assist with the immune system. It's job is completed during childhood and then wastes away leaving behind some tissue.

I saw my GP last week and went through all the symptoms, told him the blood test, how life was affected, that my partner is woken up by me (I'm asleep) with what she describes as gasping for air and shaking/fitting.

So seems like a waiting game for 8 weeks to see ophthalmology , 8 weeks to see upper gi, fuck knows how long to see neurology...

RightYesButNo Thu 11-Oct-18 00:57:44

Um, I think there’s some confusion here or someone has made a pretty big mistake in your case. Myasthenia causes diplopia; I have it myself if I don’t take my mestinon. The problem is that if you have myasthenia (and it sounds like you had a positive test for it 10 years ago???) then all the surgery in the world won’t fix your diplopia because it’s caused by muscle exhaustion caused by acetylcholine receptor problems. That’s why eye surgery is NOT a treatment for myasthenia-caused diplopia and mestinon is. So if you’ve gone through surgeries to try to fix diplopia when you had a positive MG test that just seems... hugely wrong? Maybe I’m misunderstanding?

I’m so sorry you’re going through all this and just sounds so incredibly difficult but I didn’t want to read this and not post re: eye problems and then risk forgetting tomorrow if I didn’t post tonight (I’m sick right now).

SimplySteve Thu 11-Oct-18 09:48:00

You're not misunderstanding. I was dx with diplopia about 15 years ago, and I had 5 operations on my eye muscles in the following 5 years. It was then my consultant said she had never seen anyone with the problems I was (am) having follow the surgeries, and she was very concerned that my recovery was in the weeds and I still had strabismus and diplopia.

This consultant asked me if id ever been dx with a muscle condition. I said no, and she requested a blood test to check for Myasthenia. Unfortunately, she retired the week after requesting me to have the bloods. The bloods came back positive for MG, but nobody bothered to follow it up. I told the new consultant (when he joined 18 months later) that I'd had a positive result for MG via bloods. His response was "I don't believe you have Myasthenia", then couldn't wait to get me out of the door.

The hospital I attend is rather strange when it comes to departmental protocols. As I haven't been seen for a while, and because I'm having these issues (which really has to be MG given symptoms and blood results). It's incredibly frustrating having to wait until December (I have two appointments in December and the likelihood is 3-4 operations in my future). If I manage to convince to internally refer me to neurology I think it's likely to be March or April before I'm seen.

It doesn't help that I have other disabilities that screw me over on a daily basis; and my poor wife is registered blind. It'd be nice to get some QoL.

I hope you feel better soon, @RightYesButNo smilethankscake

RightYesButNo Thu 11-Oct-18 10:53:14

Will write more later but didn’t want to read and run. Just wanted to say I’m so sorry - you’ve been through it!!!

Schuyler Thu 11-Oct-18 11:04:10

Oh this is sad for you. sad I don’t understand why your GP isn’t being more supportive. Your GP can refer you directly to a neurologist. This needs to be done ASAP as unfortunately, neurology clinics have long waits. Can you get a GP appointment soon? You need to be referred based on all your symptoms, not only your eye ones. Sounds like neurology have let you down which sucks. Best of luck. I really hope you get where you need to be.

SimplySteve Thu 11-Oct-18 12:18:43

I think I will write a list of my symptoms then go see my GP. There are only two of nine I will see (PTSD is a bitch), but the practice offers a good amount of book on the day appointments, which can be booked online, so I will likely get in Tuesday or Thursday next week. I do feel I've been massively let down, and that my care just disappeared when the consultant retired really pisses me off. I had to harass the eye secretary for an appointment (due to sight test finding strabismus and diplopia) which was hard work, I think I will likely have to attend this ophthalmology appointment, but I will go in with notes and symptoms and try to push for a neurology referral. It's a new consultant I've been allocated to, so I have no idea what his reaction will be.

Thanks so much for all the posts smile

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