Not been diagnosed, yet, but I'm just curious how many of you have been diagnosed but don't have any, or serious, issues with your eyes or eyelids?
Browsing through the symptoms, it's one of the few I don't really have. My eyes or eyelids twitch a lot, my eyesight is blurry/fuzzy almost all of the time and I have a lot of trouble focusing but I don't have the droopy eyelid symptom.
I have trouble walking properly, weak legs (and arms), trouble swallowing, my voice gets croaky/husky if I talk for a few minutes, but my biggest problem is an increasingly severe breathing issue. It feels like my chest wall and abdominal muscles are just giving up. It's been my main issue for almost two years and I've not yet had an agreeable diagnosis I'm heading along this path next.
Cheers
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DaveT81
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I think it depends upon which type of Myasthenia you may have. Have you had blood test? That is the only way you will get a definitive diagnosis or sometimes by clinical exam from a specialist neurologist.
All your symptoms may suggest Mg but there are other things which can cause such symptoms. If you experience breathing difficulties you may need hospital attention immediately as a Myasthenic crisis is very serious.
Looking back on your pots in various forums you may have a collection of conditions which are often linked. Liverpool Walton is the only centre I know of helping people with suspected DNF.
CFS/ME often follows a viral infection from which you don’t ever fully recover.
About one third of Mg sufferers have chronic fatigue but neurologists don’t like it as Mg is muscle weakness, not fatigue.
Fatigue & breatlessness goes with AF.
My list is as follows:-
AF with AFl, PoTS, very low BP, Sleep Apnea, EDS, CFS, Mg, Autonomic Dysautonomia, Ulcerative Colitis - and they are all connected but getting a definite diagnosis is very difficult - unless you have something like blood test or ECG etc.
I do so relate to your situation - I’ve been seeking answers for over 7 years now but happy to say most conditions are now on record, been treated & I have been treated & supported so do keep on, keeping on until you find the help you need, exhausting although that can be.
Check out the Myaware site, if not already done for a list of neurologists & loads of info, take that to your GP as very, very few know anything about Mg.
Firstly, thanks a lot for your extensive reply. I really do appreciate it.
I feel like I'm close to just giving up after almost 2 years, but I can't imagine how hard it must be after 7 years. I'm glad you're in a position to have a lot of your issues under control though.
That said, I have had symptoms going back to my first afib problems about 4 years ago, so I guess things have just been building up since then.
Re: Walton Neuro - it's funny actually, I was referred there about 12 months ago but they rejected it and referred me to rheumatology, despite me not complaining of pain. I was referred to a Spire neurologist at my own request and he said I had 'unexplainable symptoms' and sent me on my merry way. I pushed for MRI, CT, nerve studies, all clear. So, as you can tell, I'm taking shots in the dark.
But MG does sound very likely at this point. What I'm experiencing all over feels neurological in nature, but is clearly weakening or affecting my muscles quite badly. There is history of neuro issues in my family, with both my dad and sister having problems that have rendered them almost disabled at one time in their life.
I'm absolutely convinced that my issues began with a strange, short-lived virus in July a couple of years ago. That either caused, or exacerbated whatever is happening now and it's only gotten much worse since. I'm also absolutely positive that the fatigue is a result of the weaknesses, not the other way around.
I was still able to walk decent distances about 12-18 months ago. Now I get a bus to work 3 days a week and get a cab home, as the extra walking almost kills me. During that time, I have also noticed I have a weird, side to side walk too.
Anyway, getting off-topic now.
That's quite a list you have. I can't quite match it, but I have AF, high BP, CFS, mild sleep apnoea and also IBS. I know for a fact, like you also say, they're all related but I can't for the life of me get a single doctor to make the same links.
I will check out Myaware and see if I can get any information to take to my GP. I've kept away now for over 2 months but I'm bordering on being seriously depressive with the way I've got few resolutions, so am planning to see him at some point this week if I can.
The side to side gait is very typical of Mg. Do be very careful of your breathing - if it is caused by Mg it can deteriorate very quickly. Very rule of thumb but whilst resting - take a breath in & speaking out loud start counting. Anything over a count of 20 is ok, 10-20 is a warning so rest & if you can’t reach 10 then Hospital immediately. If you have CPAP & go onto CPAP it helps. Take care & feel free to message me for support.
If you are on FB there are several support pages I can recommend.
I have been to A & E a few times in the past with my breathing but because there's nothing obvious showing on chest xray, no PE symptoms, etc I just get sent home.
I have a call with my doctor this am, so I am going to broach the subject with him then and see what he says. I will 100% get in touch if I have anytthing to ask.
Just one caution - I found out the hard way - many drugs used for AF are contraindicated for Myasthenics - as are many other drugs - Beta Blockers feature and my medical file has a big RED ALERT on it to ensure I am NEVER given Beta Blockers. Myaware put out this list myaware.org/drugs-to-avoid
Symptoms with my eyes were those with Occular MG but to start with all the tests were negative for 2 yeatrs.
My opthalmic consultant plus neurology decided that overall it is Occular MG . They repeated the blood tests again this year and were for the first time in the Mysthena range.
I have had less symptoms with my eyes but both consultants want to keep a watch over me.
I am very impressed with how I am looked after at Salford Royal.
I have yet to be told I officially have MG but my neurologist says ‘possible MG’ and definite neuromuscular junction dysfunction. Having said that, the only eye symptoms I have is blurriness - no drooping either. The rest for me is arms, legs, shoulders, voice, swallowing and some breathing.
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