[Cheryl]

Had to switch to automatic transmission when stalled on railroad tracks. Just go places I know as vision too blurry to read street signs. Use cruise contro most all the time and get off road if stop/start traffic. Wear solar shade wrap around glasses right to darkness. Don’t plan more than 50 mi one way drive per wk. Have discovered taking more mestinon doesn’t help anymore.

[Cheryl]

So reassuring to see i am not alone. When blurred vision and weakness are severe not only loss of balance but in dark can’t tell where up is. Neurologist poopooed me.

My big rescue dog is sensitive to this and pulls to steady me when walking,on good days the leash is slack,won’t move if I don’t have the cane. And yet the neuro said this wasn’t a problem.

Does anyone else have tinnitus along with loss of balance? How many are sero negative?

[Cheryl]

Hi Shawna,

Nursing instructors must have minimum of MSN with progress to PHD in nursing. Iwanted to do public health/sociology. I know nursing instructors who have to work side agency jobs to survive and underwater in school loans. Not for me.

Plus that there is no nursing job that accomodates flares,diarrhea,weakness. In fact many health businesses don’t want graying over 50 nurses interfacing with public…wrong image.not to mention,mandatory overtime or being assigned different duties that compromise even healthy nurses.

Nursing could be much more humane and reform is exhausting and slow…been at it since 1980!

[Cheryl]

Hi Leigh,

Thank you for writing! I have felt so alone in this loss. The last CPR recert was a pity pass,repetition wasn’t good. In 2016 had switched to nursing home from ob and nurse patients were trying to diagnose me, it was embarrassing to need to walk pushing a wheelchair,to have unstable hospice pt concerned about my balance. Like you eyes wonky, at times couldn’t tell a 3,6,8 apart, breathing was hard at times and talking impossible. When renewal came put license inactive after39 yrs after not finding any jobs I could do,the M.D. said should go to assisted living. I went into a 2 yr depression that was made worse by therapist.

I have been wondering if any connection to hep B. I failed to sero convert after 2 series. When moved to tx they demanded a 3rd series,still negative. Continued sero neg for 20 yrs when suddenly sero converted. I am triple sero neg to MG but strong mestinon response. Wonder about other healthcare providers experience.

I am into spinning and knitting but knitting is exhausting and counting stitches is a nightmare,hate frogging or finding I messed up a simple lace…been knitting 45 yrs and losing fluidity is as upsetting as losing my career. Heck,some days too tired to respond to texts or answer phone or carry cat into vet

[Cheryl]

I love my toyota sienna van. I get 19mpg when only short in town driving but 27 mpg on interstate driving. Has flexible configurations supposedly esily done but dealership understands my weakness and will stow and unstow as needed. Doors open easily with button. Middle seat is bench so can lay down ,can also slide upright walker in on floor if not stuffed full of sale stockups. Walker also fits in 1/2 side of trunk and leaves plenty of room to haul other stuff even with one seat in 3rd row.

Because I can’t see future i wanted the most flexible accomodating vehicle possible,this is it for me.

[Cheryl]

I had to stop nursing 2016,2017 fell breaking ankle and needing help to do white dove release business. Blurred vision and eye pain sidelined writing. Finally got disability 2020 when was at miserable low.2021 demanded trial of mestinon despite seroneg and started feeling better and slowly could do more. Still mostly in the house,hair is longer,can walk further with cane,upright walker lets that happen without back,hip pain. Still have to laydown with bipap in afternoon. Must be in bed by 2100 when exhaustion makes balance go.

Basically not well

[Cheryl]

I hear your fear. Those of us who are sero negative,have endured gaslighting by MDs,have a tenuous stability, on Medicare and SS carry huge amounts of stress. It was insensitive of other responders to relegate fear to banal politics.

I was terrified by unexplained Mestinon shortages last year as this allowing me to eat,breathe,live independently…nothing big ,right? I recently got a letter saying mestinon/pyridostigmine won’t be covered ‘try something else’. Of course this med is accepted as frontline treatment in every other country.

I think we need to support each other in the insecurity of illness and living in the US

[Cheryl]

Absolutely endorse Frank Morrow on the Resmed/FX. I have bipap for the ineffective breathing and heart rate goes to 140 while oxygen goes to 70 and wake every few min without bipap. It took me 2hrs to get used to it, was so desperate for sleep. I use a headband from Dollartree as chin strap as cheaper. Also put the tubing at the top of pillow is you roll during night. Use it every night!! and if you need a nap!! Let us know how it goes in 2 wks.

[Cheryl]

Would like survey on how many people developed MG or got worsening after taking Levaquin or Cipro. Were you told of correlation? What antibodies did they find? Has it gotten better? Have you taken these antibiotics since getting MG?

[Cheryl]

YES! For years prior to getting Mestinon have had ascending back pain if stand very much longer than 5 min. Always started at LS joint and went upward til between shoulder blades and I couldn’t breathe until sit with elbows on knees for 20 min. Pulmonary function tests were falling. Started Mestinon and now after nearly 2 yrs on it can do all dishes, shop in Aldi, PFT has improved 20%. I just know to sit down when pain gets to bottom of ribs. Legs go noodley as this starts so use cane at all times.

My ego has been crushed when reed thin 84 yo men help me lift stuff or very old women mutter, shake their heads when I use a mobility cart at 66. Really wish MG gave us purple skin so people would understand. A store greeter lectured me on living my best life no matter what little minds might think as she had seen my variable abilities over years.

[Cheryl]

I also had diarrhea up to 6 times a day after starting Mestinon 60mg 3x/day. Neuro acted like this was an anomaly, sent me to gastro who wanted to do colonoscopy and biopsy but admitted it could be Mestinon. Switched to 180mg every 12 hrs. I increased uncooked oatmeal mixed with Kefir, eliminated red meat and pasta.Then decided to try limited feeding time to 4 hrs which resulted in good weight loss and reduction to 1-2 well formed. It took a year to get to this point but also have quadrupled how far I can walk,no longer get so breathless have to lay down for bipap breaks, can do better taking care of house, brain fog lifted but blurry vision if don’t wear sunglasses or try to read long.

As someone else said, have urinary incontinence with urge, stress and seems like a urinary retention the rest of the time. Again neuro said this doesn’t happen. From the support group I find this is common. Thank goodness Meijer puts pads on sale often.

As a side note, I am triple sero neg but can’t get testing repeated to see if it changed, despite the lived experience of support group as neuro says that doesn’t happen in MG but does in other autoimmune diseases.

So just seek to have balance diet, add fermented foods, eliminate alcohol, manage stress in all forms, keep a detailed daily journal while things aren’t great so you can track subtle changes.

Good luck

[Cheryl]

Like Greg finances for the future are of concern. Being sero neg and therefore not having MG per neuro( he also disputes 3 pathologists about IBM or PM as only he can diagnose) who concedes that mestinon helps me greatly but it helps a lot of people!!!????! Am a bit worried if suddenly can’t have that covered as is only way I can be independent. Paranoia has made me cut spending down again as it was before got SSDI…$600/mo. Grateful to own my home and son lent me a van. Instead of hiring things out am doing them myself, glacially slow and with difficulty but each thing done helps me not feel as defeated most days. Am ambivalent as some people get treatments that make them so very functional and mestinon just gets me off the start line but I would be devastated going from what I used to be to this again and yet the thought of the rest of my life just being a sad,scared, weak, dizzy, weak existence is unacceptable. So I am stuck between living safe, small life or try to be more as I was and make a colossal fool of myself as I fail. So many thoughts with many sides in this head. Will now go try to put a bike rake together in hopes that soon will ride it… end result unclear.

[Cheryl]

I have been doing intermittent fasting where I give myself 4 hrs a day to eat then can only have tea/water. Typically is 11-1500 during which I choose good protein, lots of veg, mod amt dairy but not a great quantity and in no rush. This is when Mestinon is strongest and can choose to do things before this time and still be able to eat. Also has helped lose weight, cut grocery costs and more likely to keep kitchen clean as later in the day standing is harder. Still feel tired and blah after eating but only having one such time a day is more livable than frequent meals.

[Cheryl]

When people say exercise, to me it means above activities of daily living. For me it was exhausting activity to get showered, dressed or fix a simple meal for years and walking 75 ft took me to tears. I tried PT but was chided for only managing 3-5 reps which then wiped me out for days being in same clothes, unable to brush hair or teeth..at 58! Being sero negative, was told to go to assisted living and sign DNR, get will updated.

My Swedish genes and nursing knowlege screamed. Demanded mestinon trial. I decided to focus on walking and getting up and down from chairs,lifting weights of groceries, dog food increasing the weights and frequency. Had to bring dog food into house from car by bucket, groceries just perishables came in first day. Now 2 yrs later can walk 750 ft daily without tears, bring in half bag of dog food in garden tote, take a shower washing hair shoulder length hair and comb it out, fix a meal. Still have to rest often but I am now LIVING.

Thing is everyday living is exercise and in my opinion should be our focus. At no point did any professional seek to understand that making living safely at home was the goal, not doing a checklist of reps that left rug dusty, trash in house, dogs unwalked, hair cut very short so styling doesn’t matter.

Just my thoughts

Cheryl

[Cheryl]

Not sure I ask why me but “what now?”

I have struggled with being disabled and unable to work, declining fast and deep, using up saving for years before SSDI, being given diagnosis to be taken away, given placation, insults… then Covid made it all worse. The tension with adult son and fear that I was dying and not knowing what now…the relationship ended abruptly3 mos before finally got SSDI,2 mos after long covid eased just slightly,5 mos before getting Mestinon. Life could be divided into pre and post mestinon though he still isn’t convinced MG , says lot of diseases respond to Mestinon and being sero neg, SFMG neg ( done by MD who said it would be neg before even did it). While a lot of things have gotten some better, still barely able to cope day to day.

86 yo friend is now having to go into skilled care having been really horribly neglected by her daughter. Not sure how to plan the next bad thing, not sure which will be the step too far.

[Cheryl]

Didn’t plan this.

[Cheryl]

Hi, very wise to be thinking ahead. Was RN and was prepared for disaster while able bodied and thought I was OK until derecho hit 6/29 and power went out for 2.5 days. Knew not to open freezers at all, open fridge very briefly and not put anything warm in, had battery booster for cell phone, had camping water carrier but water was ok, battery radio, gas stove, get the mestinon quarterly, have candles in lanterns, waterproof matches. I knew not to leave the house till any downed lines were cleared. Disaster training after Katrina was helpful.

I didn’t count on the need for bipap not being met as grid had been so stable here the previous 11yrs. First night wasn’t bad but second night had real trouble breathing, esp since no AC and a bit warm, when called around trying to find place to cool and get power found that no county/city action for people.

When the power came on found the neighboring county initiated cooling/charging centers immediately only needed to drive 45 mi. I really needed a breathing break and was starting to decompensate and couldn’t get help in my own community.

Since then have been raising hell to get better community disaster plan. Have considered a Jackery powersource but the cost for something that may not happen for another decade…

I would recommend looking at your county disaster plan, talking to your public health dept for information that might help in event of emergency.

Cheryl

[Cheryl]

Hello Leigh,

While ihave found the online groups helpful,they have decreased frequency and if don’t lay dow with bipap beforehand I can’t talk .

Yes,is frustrating not toget better drugs. Was told since not clear evidence it could help,the risk is too great. The fired neuro said is fnd and mestinon is placebo. My feelings still hurt from the gaslighting at the same time was consistently failing to stay upright and do things. Good thing is various people in town have googled MG after meeting me and give support on bad days,give me hurrah on good days.

Blew up on son one night,next day he abruptly left at age 31. Miss him but not his dependency or attitude when feeling bad. Totally contented to be alone with critters. Maybe some day will need him back but feel he needs his own life as much as I do.

Getting tired of knitting handspun yarn into bespoke gifts and people don’t wrar them. Have all the clothes I need and get sad seeing masterpieces in thrift store. Love photography but only so much can display. Friend encouraged me to try gardening. Have learned how very many ways I can fail. Esp since at 6ft ground is so far away,have been stuck in awkward positions debating if I should be unable in 10 minutes,how to explain need to dispatch. Rehabbing this old house is fits and starts. Used to love to travel but last trips were grueling without major problems. Friend with MS has told me she just decided MS doesn’t have her and goes on hikes,trips…course only since she started the new drug.

Really think this was a thing in 2000 for me,had uti treated by cipro and had weakness,blurred vision,fatigue on and off til 2007 had weakly pos tb skin test getting 9 mos of med was told all I felt was normal despite rising liver enzymes and crp. Was forced onto zoloft for flat affect which made everything worse more often. 2012 legs stopped working well everyday,2014 tried to push through near dailyproximal weakness with more caffeine.2016 crying was daily esp when shamed for complaining about simple menopause. Only see sleep md as he writes mestinon. Do you have pcp? Are they only single issue per visit, no physical 10 min visits there?

Thanks for listening,this mess is not what I signed up for. Chloe Atkins. Book about her saga with sero neg mestinon responsive disease is only lifeline I had.

Peace

[Cheryl]

Sounds like you are going through the meat grinder.

Keep going with cpap and reduce fluids 4 hrs before going to bed. Once you start getting a good block of sleep the peeing eases up… don’t have a prostate so results might vary but the value of good breathing at night is incredible and fixed a lot for me. Also have audible on the phone, when feels like can’t go to sleep put on the same dang book, the voice, the story knocks me out faster than the philosophy class I took in my 20’s. Hang in there.

[Cheryl]

I am with you Maria. When I had to stop nursing at 58 for blurred vision,proximal weakness, fatigue, shortness of breath. I was told it was aging because seronegative for MG,labs all over the place and with 2 muscle biopsies they couldn’t be definitively identified. Five years elapsed with multiple horrible interactions most ending with being told since they couldn’t diagnose, they wouldn’t treat and besides its probably menopause, aging or inactivity!! Now 66, still an enigma being triple sero neg but responding strongly to mestinon, living on SSDI,scared about what real aging issues with look like, grieving what I thought my life would be in my 60’s.

Cheryl