Hi everyone

This is my first post, and undiagnosed, I'll tell you my history

48 yr old female, 3 years ago struck down suddenly, from healthy woman enjoying a packed social life and full time employment to a frail female not functioning and weak. Bloods revealed slight B12D (179 (211-911)) and peri menopause. After much arguing gp agreed to start me on B12 tablets but stopped them when my level rose to 219, so I bought my own, I have been on hrt since age 32 when my ovaries failed after my hysterectomy

Things have been much the same between 2012 and 2014, I holidayed abroad in sept 2014 and as much as i enjoyed it, it exhausted me, the heat, walking, asthma took a battering.

Over Christmas 2014 I developed diplopia and as embarrassed as I am to admit, I thought nothing of it. Feb/March I developed blurred vision intermittently throughout the day which interfered with my job using PC. I thought (as a contact lens wearer) I needed a new prescription but optician said my eyes haven't changed, so I told them about the diplopia. They referred me to emergency eye clinic who diagnosed 6th nerve palsy. They tested diabetes and did pin hole test and said its age related and sent me to opticians to get permanent prisms. Optician refused the diagnosis and said see GP for tests(he wrote then down to give GP) GP asked my symptoms and as I started reeling them off she asked why I hadn't Persued these, I had on many occasions and everything is always blamed on menopause, she referred me to neurologist who I saw 2days ago, he did various physical exams and said he suspects ocular MG and has given me mestinon to try, he sent me for the antibody test and I'm waiting on an MRI. I have noticed I get 'heavy eyed' but I'm always tired and when the crashing fatigue hits they go even lower but never obstructing vision. The lid of the eye with diplopia doesn't shut properly when blinking sometimes and I wake up with gritty eye feeling. Generally muscles are weak, legs go wobbly downstairs and sometimes walking and simple chores exhaust me and my muscles. Day 2 of mestinon and the only thing I have noticed is the first night my eyes seemed more open, more alert, but nothing since I don't think. I haven't choked on food, but have quite a few times on my swallowing saliva and liquids, but it feels like my throat has moved nearer my jaw and something not right on left side of neck when it happens. When talking for a while my voice sounds quivery as if I'm nervous, and when I put pressure on my arms (like pressing the hrt patch onto my thigh) my arm will tremble

I'm doubting I have MG (or ocular) as I don't seem to be benefitting with mestinon and don't seem to have the classic symptoms, although he said he purposely exhausted my eye muscles Friday to see their reaction which led him to his potential diagnosis, he said its 50-50 with the antibodies and won't go purely by that

Does this sound like something else? Terrible tinnitus abc when I stand it's gets awful with a pressure building in my neck. Thyroid is normal apparently

Sorry it's so long winded

Anne

Hi, Anne. Welcome!

Um, I have to tell you that you don't have a "slight" B12 deficiency. Every cell in your body is now running on fumes, if it's getting any B12 at all. It's dangerous! I'll bet your homocysteine and/or methylmalonic acid are high. Did anyone check your parietal cell or intrinsic factor antibodies (looking for pernicious anemia)? There's always a CAUSE for a B12 deficiency!

What kind of B12 are you taking? Methylcobalamin is the superior form. Cyanocobalamin has to be converted by the liver into methyl before the body can use it and your body needs it right now! Take at least two 5 mg. tablets twice a day. I personally like the Jarrow brand, but there are other good brands. I get mine on Amazon (cheaper).

Your doctor is misinformed. The blood test checks what is circulating in the bloodstream and not what is actually getting to the tissues. Oy. Most people take B12 the rest of their life after a deficiency. I do, since I was diagnosed in 1999.

What about vitamin D? Did they check that very common deficiency, too?

Your symptoms sound a lot like MG. MG is all about fatigable weakness, which is what you describe. If you have had MG that long, Mestinon might only sort of work right now. You could be so bad off that the only things that will show dramatic improvement are steroids or some other treatment such as IVIG. The worse a person gets with MG, the more help they need. And Mestinon is only a helper drug, and doesn't address the underlying autoimmune process.

There are muscles that open and shut the eyelids, so if the muscles that close them aren't working, they won't close! More often it's the other way around, but it does happen.

Tinnitus could be an effect of MG (muscles are in the ear, too) or the B12 deficiency. Or something else such as allergies.

A person with MG can become weaker so slowly that they don't realize how weak they are until they do an activity. What you describe, such as the arms trembling, sounds so much like MG. MG can trick you into thinking you're okay, and then can slam you into the ground the next day. It's highly unpredictable and you have to take it easy!

Does being out in the heat make you worse? It will make MGers much worse.

Are you at all short of breath? Seeing a pulmonologist is a very good thing to do for MG. At the very least, you can get a baseline of MIP and MEP breathing tests.

If you get to the point where you can't swallow, breathe well (in or out), or move well, you need to dial 911. MG can tank really quickly and you can't know how bad it will get. So please stop ignoring your symptoms and take it seriously. We've all done that, but since you aren't on more than Mestinon and aren't doing well, you can't really take that kind of risk with your life.

MG is called a "head and down" disease, because people will often notice any eyelid drooping or head/neck muscles weakness first.

Did that one doctor give you proof of a 6th cranial nerve issue? That still wouldn't cause fatigable weakness.

What else can we help with?

I hope you get answers soon. It's not exactly fun having MG, but, if you do, there are ways to treat it and live a good life with it!

Annie

Hi Annie
I really appreciate you taking time to reply.
Doc gave me back in 2012 cyanb12, for 6 or 12 weeks I can't remember then stopped by saying I'd reached an acceptable level, I wasn't happy having read up on how awful and irreparable the effects can be so carried on myself. Easter this year I bought methylb12 injectable after being given info from a reputable charity here in UK. I did a few but lost my nerve so bought Jarrows from Amazon and boosted my levels, and I started on a full course of vitamins, iron and calcium in the hope it'd make me feel better. I'm still taking them now. But I never improve though, just get more worn out, more achy and stiff. My back 'goes' every few weeks and I'm seeing a chiropractor for misalignment in my upper spine, just seems from hitting peri menopause/b12D deficiency I'll never be that carefree energetic woman again
I have been to work today (first day at work on mestinon ) and not once did I need my prism glasses for blurred vision on PC, I was amazed, it seems to have helped my fingers and hands too to be more agile, as my 4 hrs were coming to an end I could feel the arms/fingers fatigue.
The eye specialist told me it was 6th nerve palsy, I don't know how or what they did to test it but told me over got it because of my age
Tinnitus has got worse over the months, it's constant now and changes pitch which leaves me with some hearing loss. ENT specialist told me 3 years ago I have hearing loss consistent with a head injury but I haven't injured my head, MRI was clear back then.

Sometimes (more rare than often) I can socialise and enjoy alcohol and stand all evening, other times I can't stand because my leg will wobble and I don't fancy a drink, nothing's consistent apart from the fact I'm always tired
The crashing fatigue feels like I've been drugged and my prisms do nothing for the diplopia .
My holiday abroad last year was lovely but it wore me out and the aches were bad, my partner suffers from gout and many a day was spent with the pair of us hobbling about. I developed allergy induced Asthma 5 years ago but now I need my inhaler even when out of the house (it's to our pets)

I have severe latex allergy and carry 2x epipens and have read about MG crisis so I definitely would seek help if it got unmanageable.

Since taking mestinon I don't seem to be having my usual toe/foot muscle spasms but that might just be coincidental, but have an increase in muscle twitching.

When I video my blinking in slow motion video there's a definite lag, it's laboured and slower and when looking up the lid hardly moves on blinking unlike the good eye

GP did my bloods a few weeks ago and called to ask if I supplement as b12 and D were >2000

I've never been tested for PA, they just don't ever seem to do in depth tests, just an overall amount in your body, not the usuable amount.

I've cured a massive amount of palpitations by cutting out caffeine but still great the odd non worrying one here and there, it's just this rush of pressure, tinnitus and heart racing when I stand up on so many occasions that I lose my hearing til it settles

I keep rambling, sorry, part of me is relieved the neurologist is taking it seriously but the other part is terrifying me how bad this could get if I'm properly diagnosed

Anne