[John]

Not doing too well quitting vaping but trying the Nicorette Gum as we speak. Seem to go in 2 days bursts without and then in a weak moment breakdown and vape myself into oblivion. Also trying to not take any tablets(preds plus Mestinon) apart from the Cellcept) to see if the eyes get better, just as a trial run, but probably wishful thinking, as Neurologist would not be happy about this and yet i get conflicting reports from Opto-Neuro guy who states the high dosages of Mestinon not good for the eyes(im only taking now 9o MG 3 times a day) and the Retinologist guy says the steroids are causing this, so just confusing me somewhat…..

Trying to take matters in my own hands for a few days. Also did start working out a bit(push ups) and now suffering from back and stomach pain somewhat from straining….Used to do about 50 a day, can just about do 10 plus used to be a 36inch waste and was shocked as I can’t get a single pair of pants up past my waist let alone do the zip up..42 inches now! Disgusted with myself as when on 80 MG of Preds all I did was eat throughout the day and night but should have had more self-control.  Oh well, onwards……

 

Trying though…..? Perhaps too much. Deep breaths lad, in and out slowly_-)))))

[John]

Update, still very tired but now something else has cropped up. Not only am I having double vision like many others and it will not go away but in the last three weeks everyone’s face is distorted, bloated and noses three times the size. My Neurologist just made me take a brain MRI thinking I might have something called, Prosopometamorphopsia! WTF. I had to look this up. Thought MG was rare, well this is off the scale if true. Awaiting to hear the results but wondered if others had ever experienced this and Mods, not sure with the new web format if this was the right place to post as really wanted to start a new theme and wasnt sure how to, so move pls if appropriate.

[John]

Hi Steven..

 

I’m 71.

[John]

Hi Claire,

Think I have a good team. Neurologist(Asst. Professor at UMI) Opto-Neurologist(One of the best in the country I’m told, (especially dealing with MG) at Bascom Palmer and Retinologist also at BP, plus a Concierge Doctor who acts also as my main PCP on call round the clock if need be.

My Neurologist is great, and I have come a long way with her, albeit she is not so keen on me taking Vyvgart every 4 weeks or so.  Had to convince her for the second session, but she wants to see how I’m doing with the immunosuppressants, monthly blood tests to see if Im going in the right direction and how I do with my tapering down on the Preds before we go much further.

I’m so much better off than so many others here,(so feel very guilty when I read what this dreadful disease has done) but also a type A personality(which actually has its drawbacks) as well as advantages as mind over matter wins with me, it’s just that I’m going through this incredible tiredness and eye stuff that I have never had in my life and feel quite weak, just over the last month or so, and not sure what to do about it, but should know more in the next month. Considering I couldn’t talk properly, swallow, chew or eat just 6 months ago, let alone open my eyelids, the IVIG didn’t help but having the Plasmaphereses exchange did the trick I believe. I also realize that I could have a relapse when I least expect it.

Cannot get totally rid of the double vision at all,(I can now swivel the eyes to control it better) so still have to be careful driving(but was unable to do so up until April of this year,)

So, it’s all good. Have to be optimistic and what with the high original doses in Jan-March of Mestinon which as many know causes rather unexpected rear end(as in gaseous) problems and their consequences, there have been some very funny incidences along the way and I hope the mods here won’t mind me telling this story as we all need a sense of humor. Had a lot of difficulty and still do on the bad days in seeing the keys on my keyboard, plus double vision, in this instance got me into trouble and as you know the i is next to the o!

I own a property elsewhere and was told that the wooden boards of the boat dock were falling apart and required sorting out. Was given the email address of a Contractor in that area and basically wrote to them telling them what was going on and thought nothing of it until yesterday and I wondered why I hadn’t heard back so contacted them and spoke to someone there who actually recalled my email and they thought it was a joke and suggested I read what I sent them….(all I can tell you, was that after reading my email as needed time to find it and said I would call back) spent the next 30 minutes on the floor laughing like a hyena and after that I had more than double vision!! This is what I basically said.

It has come to my attention that my dick is rotten and falling off, and wondered if you would go over there and give me an estimate. OMG!!!! -)))))))))

 

 

 

[John]

Thanks for the replies and Stanley, I’m sorry to hear this about you but had to read it twice, as thought that was what I had written, as virtually identical. Last night, couldn’t sleep as per most of the other nights this past month, until 6am this morning and just got up.

But in one respect, pleased to hear I am not alone, as the eye symptoms you described are, as I said, identical?  I thought it could also be part vaping I do(as after many years having difficulty giving up the nicotine as went cold turkey on ciggies last September after 50 years of smoking) but now believe it’s MG. As a matter of interest, have you had a recent blood test which revealed anything? My WBC is still quite high and dehydrated (anemic) somewhat, and the object now if for me and others to try and found out what we can do about this?

I mention this as when I was on 50-80 MG of Preds per day when my condition was really bad, I couldn’t sleep at all and was told it was the high steroid dosage and when I reduced, it would get better, which it, did until about one month ago or so. My weight has ballooned by about 35lbs in 6 months and just still too weak to exercise properly, albeit did manage to do 3 miles of light running on the spot, this morning, as desperately trying to find an answer to this. Love my food as well, which doesn’t help with weight loss(but actually shouldn’t complain too much, as many know as been there, couldn’t even swallow it, yet chew it in January this year)

Had two monthly sessions of Vyvgart. First month was a fantastic improvement, second not so!

Lastly, not sure if there is a conflict here as Neurosurgeon scolded me somewhat for tapering off too fast on the preds which I did, as Retinologist blames the steroids for my deteriorating eye condition as trying myself to find the right balance through my own common sense and yet as many here have already said, we are all trying to find the formula to somehow keep us in check with this disease but it changes daily and affects all of us differently. But it’s the tiredness factor which is the main topic here that I would like to also improve upon and welcome all suggestions.

Seeing the Eye guy on Wednesday plus another blood test next Friday and should know more by then. Good luck to all.
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[John]

https://www.webmd.com/brain/features/remission-myasthenia-gravis

 

 

[John]

The idea is to reduce the steroids and not worry so much about mestinon.

Reduce yes, but wouldn’t the best idea eventually be to actually totally come off the steroids and how would one know when this would be?

[John]

I thought I was doing ok until about one month ago and well onto what some might call remission. Down to 90mgs of Mestinon 3 times a day. 10-15 mg of the Preds and 1000mg of Cellcept twice a day. I’m just very tired recently and have little strength. But what bothers me most are my eyes. I can control the double vision somewhat by moving my eyes at an angle but have been diagnosed with Central Serous Chorioretinopathy, basically a build up of fluid in the eyes, and I notice that the vision is deteriorating. When driving though I still have to place a piece of tape in one lens.

So my eye guy blames it on the steroids and albeit have gradually honed down from 80mg a day from Jan when first diagnosed and my Neurologist says that I can take the mestinon when I need to, but I have got to the stage where I don’t know if the pills help or not?

Changes daily as well. At present, just quite weak and tired. But the eyes do concern me but seeing my Opto-Neurologist next week and will see how much worse the eyes have got and take it from there as there is treatment for this as in laser procedures but dont know how risky this could be?

The good news is that they were worried re my high WBC count, but it has gone down to 12 when it was over 20.

Lastly, trying to give up vaping after giving up smoking for 50 years cold turkey and finding this difficult, but also wondering if this is doing further damage to my condition. I though should be grateful as do not have any previous eating, swallowing talking or breathing problems as in Jan/Feb of this year.

Best to all.
p.s. Had my second lot of Vyvgart infusions. Didn’t feel the last monthly session made any difference,(could actually have made it worse, but I don’t know) and just noticed that they admit to administering a dose of Chemotherapy therein. What’s that all about?

[John]

Matt, nobody has replied to you, so I will give it a go. I still have double vision(not as bad as before which was extreme) plus fluid now forming in my retina due to the steroids I’m told. On my second bout of vyvgart, just started, strength may have gained a little, but eyes the same. The second dose next week I hope will kick in. However, not sure how old you are but when you go and take the test put a piece of tape inside some non-prescription glasses which will stop the double vision. Get some clear sticky tape to hold the eyes open and the glasses will cover them…..If the eyes can see up to say 20 -30 feet, the number plate ahead of you it should be fine.

Don’t stress yourself as this could make it worse……any help you need fire away.

p.s. and about 30-45 minutes before the renewal, take the preds and about 4 lots of mestinon…..hopefully the eyelids will pop right open…………….-)))))

seriously, yes, I understand, no joking matter here but you will get through this.

[John]

Smoked for over 50 years, but gave up in January when diagnosed but had been wanting to do so for quite sometime. However, gone on to Vaping and I just don’t know if this will prohibit my recovery or indeed there is no way I can attribute smoking cigarettes to getting MG at such a late stage of my life.

I asked 4 different professionals re vaping and only one was negative. Personally though, I know I shouldn’t be vaping at all as we still don’t know what harm this could be causing. If someone said that by not vaping you will recover much faster, I would obviously make a real effort to give up. Anyone else vaping?

[John]

85 and you are doing all of that plus with living with MG! Credit to you. I just started up with a personal trainer, and doing weights, breathing techniques, yoga, mat exercises and learning about a proper diet. Early days, so let’s see how it goes.

[John]

HI Jodi,

I found this, but don’t quite know what it means….

Acetylcholine Rec Binding CQ 1.50(H)

Acetylcholine Rec Blocking Ab CQ 29(H)

Acetylcholine Rec modulating ab CA 35(H)

Striated muscle Ab CQ positive

Striated muscle Ab titer1:160

 

Thx.

 

 

[John]

Paul, you mention this…”This case left me with a case of central serous retinopathy in my right eye.”

Update please on this condition and has it improved for you, as this is what I have now also got. Fluid appearing in the Retina. I think on both eyes, plus a very small nodule appearing from a month ago when last tested at Bascom Palmer Eye Institute. Keep getting a fluttering in the eye and driving not been easy, plus I’m terrible at judging distance now and what appears near to me when parking is actually way out to what I think it is. The problem it appears to me is that there does seem to be a conflict here between my Neuro and the eye specialist as I think the Preds can keep the eye condition  relatively stable and yet eye gut wants me to get off them as they are in his opinion now causing the retinal problems so what does one do? Thats why I asked if anyone noticed an improvement with Vyvgart for Ocular MG as I had one months worth of infusions about 10 weeks ago and thinking another bout cant do me any harm? Certainly better than I was strength wise and balance but my eye condition changes daily.

Thx. J.

[John]

Have there been any studies that show Vyvgart can improve Double Vision?