John
Forum Replies Created
-
Great replies re the machine, masks, tips, etc. Thank you so much, really appreciate this. So here is where all of this I think will not work, and I so hope I’m wrong. I get up to pee at least 5 times in the night and that’s bad enough trying to get back to sleep each time, so I dread to think what a performance I will have with the mask, hose, machine itself, (hate the chin-strap) just taping my damn mouth shut, using some kind of stretchy bandaid(wife delighted as less snoring) seems to work quite well as learning to breathe through nose(but when that gets blocked up?)
Probably got prostate issues re the peeing(just cant go through much more) cos at our age, they will find something, anything, anyway……………….so anyone have MG, Cpap, whatever pap and pee-pap issues all at the same time😄. Less…”stuff”(very little comes out on the pillow now with mouth taped together,) but I’m woken up evert 1.5-2 hours just to pee..such a pain in you know where! IVIG appears to have worked somewhat as not so drastically tired as before having to sleep within 2-3 hours of waking up…….well, I hope so anyway………………
Eye testing on March 1st. Appears a little worse…..on the highway this evening noticed the cars on the other side, all their headlight beams went straight up in the air!!) then blood work same day, 4th Neurologist, 7th Sleep Center for fittings, 10th Dentist…..all absolutely great fun😂
Best.
-
interesting..thank you…..
-
Thx Jodi for the links. In answer to your question, I am still on Preds, Mestinon, and Mycophenolate plus pills to lower BP though my heart rate for some reason has been very low for me recently, in the high 40’s to 50’s? Plus trying not to take everyday Furosemide for the ankle foot edema as i pee every 30 mins!!! So planning carefully on long care journeys.
Theresa…. Yes, I’m the same 330 levels. Having blood work done in a week and see what’s going on? The IVIG went well, Nurse came to me over 2 days,(this Tuesday and Wednesday) and it was a lot, 7–9 hours each day depending on the pressure, luckily fell asleep for part of it. Just looked at the notes.. 900ml each day Gamunex-C. Feeling ok, not jumping up and down but ok.
(2 hours later now)
Frank….interesting what you said re the precursor to MG and even more interesting how the IGG levels with IV infusions on Vyvgart are going to go down anyway? I’m feeling a bit tired and lacklustre as I write this, and was told that the worst day could be tomorrow. Would be wonderful, if in a week, felt so much better and could actually get off the vyvgart but Im now concerned re this apnea stuff as on March 7th going back to the Sleep Center to be fitted with different masks, plus machines etc, but googling stuff(it’s not that simple is it?). I breathe through my mouth(brt myself a chin strap to try and keep that closed), plus I’m a stomach(or at a pinch but rarely), a side sleeper and two of the worst ingredients for fitting me, and I just know that having a full mask over my face is going to send me stupid. But game for this and Frank, any cpap, bipap whatever pap/mask, nose thingy tips, etc, etc, more than appreciated and as always…….. thx for the replies…..Great Board.
-
So my blood work came back and it showed that my IGG levels are low. Range bound is 603-1613. Mine, 337. The neurologist wants to take me off for the time being, vyvgart, which can cause this she says, and have me on IVIG until the levels stabilize.
-
JD, all excellent advice. Again many thx. I’m first going to start off with a good humidifier and see if I sleep better. At present, I have a prescription for edema, swelling of one ankle and foot, but unfortunately that makes me get up several times in the night, so doesn’t help with sleeping better.
Have to admit, though, these machines sound daunting.
-
That’s not the weather, that’s possibly your condition, but you haven’t exactly given us any details to respond correctly or accordingly? Little more specific please would help others try to help you?
Respectfully.
-
Always seem to on this website have difficulty when trying to reply(Mods what’s the answer pls?) as hit the reply button and nothing happens? Anyway, I hope this is going to the right place in response to JD’s post which I thank you and very helpful.
Yes, I believe I have OAS, all the symptoms. However, I learnt only yesterday from my Vyvgart Nurse in charge that as it’s still so new, they are only now getting a response from enough people who have had three or more vyvgart hydrulo(injection v IV) and the overall consensus is that this injection form is not working as well, or symptoms are returning much faster than with the IV! Just had my third session of 4, one more to go next week, and this time around not noticing a difference at all, actually feel slightly worse!!!
And that is certainly what is happening with me plus I mentioned this to my Neurologist who made me immediately get blood work done for IGG count and will see what that says, but she also feels I might need to go back to IV.
Regarding my sleep apnoea, I mentioned to my doctor that I was prepared to buy a good machine myself as didn’t want to go through again all the tests for Medicare to approve a BiPAP machine, he felt that there may be a way round this, as I have MG,(and need this machine to improve my condition?) plus he wanted to see how I got on with a machine before I coughed out large sums of money? Any comments from those who have one, suggestions, etc? But do agree, a good humidifier seems important, but I looked, and they can be as high as $2000.00. Also, you can online order a wrist machine for around $200.00 that actually confirms one has Sleep Apnoea and perhaps on the basis of this, Medicare will approve? I don’t know, but my gums feel swollen, phlegm being coughed up during the day and I will do what is necessary if a machine can assist and improve my situation as also feeling so tired.
-
Feel for you PJ.
Have you tried a personal trainer with weights? May help. Are you doing any exercise at all?
Im very tired these days and could sleep most of the time but pushing myself as getting lazy.
Wish I could help more but it appears we are each different and no two things work for the same people.
-
Wake up feeling very tired. Eyes feel stuck together. Take all my pills. Try to be positive but recently find myself just shutting my eyes around 11am and back to bed for another few hours sleep. Up, get my legs moving, wash the car, do some gardening, anything to get me moving and my legs just feel weak. Last week was ok, not so tired but this week by early pm time, eyes start closing again. Not able to get to sleep until around 1.30 am in the morning. As many of you know, no two days appear to be exactly the same.
I tried an experiment by cutting down on my steroids and Mycophenolate and felt I was not so tired, but my Neurologist not exactly pleased to hear this and told me to go back to my correct(in her opinion) regime. Instead of 2000 Cellcept a day, I halved this amount and I don’t know if it was mind over matter, but I did not feel so tired, and I don’t want to ignore her advice, but I have to get to the bottom of this acute tiredness as its rendering me useless. My protein levels are way down plus I’m a bit anaemic according to my Doctor so started taking in powder form, amino acid booster and I think this is helping.
Oh, and been with a personal trainer for the last two months doing weights and stuff and this has helped, but she feels strongly that diet has a lot to do with everything, but I like my food and don’t want to cut out everything I’m fond of as bad enough dealing with MG.
And that’s mostly my day-to-day over the last several months. Good news is that I can now control my double vision, and it’s hardly noticeable when driving which was quite scary a few months ago. Onwards….and best to you all.
-
Ari,
Don’t fret too much. I don’t have one personally at present, but the people whom I have spoken with who have a similar condition to yours or who have trouble being stuck with a needle, get a small port fitted into their neck, and over a period of time that you need an infusion, blood tests or whatever, they have found it to be a godsend, and it’s not uncomfortable at all, as after a short while, you get used to it. So perhaps you could look into this.
Best. 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_-)))))
-
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.
-
-
Hi Steven..
I’m 71.
-
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!!!! -)))))))))
-
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.
<p style=”text-align: right;”></p> -
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?
-
Stopped smoking after 52 years and went onto vaping which I’m convinced makes my ocular issues and double vision worse and about 3 months ago started getting distortion from one eye which made noses appear 3 times the size and even say watching tennis players on TV, they all appeared to have fat legs, which of course they don’t. So trying very hard to stop vaping and chewing nicorette gums like mad and yes Jodi, when I inhale(as you state), it may also contribute to the extreme tiredness issues I am experiencing as opposed to cigarettes, so whatever they put in these vapes, It’s far too strong for me(albeit I do like it) and I can feel it messing with my head particularly first thing in the morning as can feel quite feint, so really must stop!!!!
-
Renna,
I started on my third round of Vyvgart on Wednesday but this time had a nurse come to the home and administer via injection form which was fantastic and saved me from travel, trying to find the vein and 2 hours at an infusion centre. Approved for another session this year as well but if I dont see a big improvement in tiredness, gaining more strength(in order to be able to be more physical) I don’t think I will go through another 4 weeks of this without a significat improvemnent.
However, even with a personal trainer at the gym, trying hard to eat correctly, battling with steroids(that cause weight gain), I just don’t have the energy to exercise like I used to and feel it’s a losing battle. I have mentioned this before but sometimes, I get up say at 9 am and one hour later I just cannot keep my eyes open and back in bed for three hours sleep and then again in the afternoon. This is not me at all.
My problem is that I’m a foodie and being told to eat and drink what I simply can’t stand is actually making me more ill, mentally speaking, and have to force myself to be strong and try and listen to what I am told, and yet we are all made differently and the other day I got this awful mixture of kale, spinach and other rabbit type ingredients and was violently ill with terrible stomach ache. No bread I’m told. No milk. Try Keto. Do this, eat that. Not working for me at all.
Also told that my lymph modes are blocked and need a good massage to get all the cr*p out of me? True, I do have swelling(possible edema) in one ankle(vyvgart side affect?) along with a rash in groin area(again vyvgart side affect?) Again, I don’t know? And yet, getting old anyway and these little things are mild in comparison to others, be it with MG or far worse health conditions and part and parcel of the age process.
I need my strength to get about and control my weight gain, so not sure what the answer is but 3 years ago when I put on 40 lbs(before MG) I did just stick basically to eggs on toast, (also told now to only have egg whites)some salads and made sure that I lost more calories than I took in and lost that gain in 3 months. So it’s doable, but need the strength to make it so again, but at present, i”m not even at 50% before MG.
What to do? I don’t know. I’m trying, but at over 70, perhaps I should just get on with it, eat and drink what I like and be content as opposed to being perpetually exhausted and unhappy, as underneath all of this, some say that up to 60% of stress causes our condition and by listening to all of these so-called experts, they do not know what we are going through and life is short and need to make the best of it.
Onwards………………semi-rant over and now considering going out and having a slap-up breakfast, something I haven’t done in months, with a mimosa(naturally) 3 fried eggs, bacon, links, pancakes, toast, potatoes and loads of coffee(with milk and some sugar)…….sod it. 😁
-
Took a while to get organized, but nurse coming to home to give me the Hydrulo injection next week for 4 weeks. Then wait 14 days and start again. Sure like the fact that it only takes up to 90 seconds plus nurse stays with you for 15-20 mins to see all is well. They send it to my home overnight, I have to place in refrigerator and bring out 20 minutes before administration. Will see how this goes.
What I can tell folks here is that about one month ago, started with a personal trainer in a gym and have noticed a big difference with my balance which is now about 50% better. Trying to get the weight down and battling against the preds which causes the increase is my biggest difficulty as this trainer also is a qualified dietician and I’m a foodie and what I love eating, I have to not eat at all(or in strict moderation). Also like a drink or two(or three) and that’s not allowed either! Just have to lose about 30lbs. Oh what fun, but at the end of the day, it’s up to each one of us to find the right balance to beat this or control it, without taking too many of life’s pleasures away. I now look at many others with horrific medical complications and think how fortunate I am.
Up yours MG!!! 😉
-
My Neurologist is putting in the order right now. I did ask my Vyvgart Hytrulo case officer to have it done with my own Doctor(15 mins away, instead of 45 mins way at the infusion center) or indeed have it done at my own home. No go with my own Doctor(no doubt a money thing) and would have to get insurance to approve it being administered at home.
The whole point of this is the fact that they always have a hard time sticking me, so a simple injection is wonderful not to mention the time saved. I gave my wife Forteo injections for one year, and you would have thought they could have got this organized by now, and yet It’s still all about who gets a slice of the green stuff in the end.
Regardless, this will be my third series of Vyvgart and when I start, and finish will let others know how it went, but more importantly, how I did and the hopeful and continued improvement with my health would be nice.🥂
-
<div>So my first week with a PT went well. Upper body strength is fine, but for some months now I have a lot of weakness in my legs and I can’t seem to resolve this issue and at times balance is unstable and stagger around like a drunk,(wouldn’t mind if I had a few😀) Typing this from my chair and literary have to push myself off and out of the chair to get up. Anyone else?</div><div>
The good news is that I have lost 7lbs in one week which I am pleased with, but may not be so tomorrow when I weigh myself, as went out and had lunch to celebrate, albeit just some fried chicken with sweet potato fries, but just had to have two screwdrivers didn’t I, when I went there thinking I should only drink water🥂Oh boy, tasted so good after not having(well, hardly) any booze at all for about 7 months! Oh well, life is short. Cheers.
</div>
-
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.
-
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.