John
Forum Replies Created
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So, Im now 3 days into using my new Resmed Aircurve 11 Bipab machine..the latest apparently..My last sleep center session they found out that Cpap was not working for me and only with the Bipab did the events as thy call them come down drastically……so far so good with a few issues..thought I had an air leek with my mask which the hose outlet swivels on top on my head as I am a stomach sleeper and I tried to tape up the area without realizing that there are specific holes placed there for exhalation. Duh!!
Comes with an app that tells you all, still a fair amount to learn, but it seems to have cut down me going to the loo all the time. Last night I only had under 10 apnoeas(they call these events) from an original 300 plus! Throat better, less mucous, albeit used a chin strap to keep mouth closed.
Time will tell and although a bit of a performance with all of this(plus cleaning) if it makes me better and less tired, will be great. Starting tomorrow back on Vyvgart IV as opposed to the injection. As for weight gain..there is only one way for one to lose and unfortunately if as is the case we mostly have no energy, there lies the problem..but its simple mathematics, you have to somehow lose more calories than you take in, If you can exercise each day and lose around 500 calories and stick to a calorie food intake of 1000 or less, sleeping will lose you quite a bit and should stay stable and start to lose weight fairly quickly.
I lost 10 lbs in one week trying this but its more mind over matter and you have to force yourself to lose weight(and I like the occasional drink or two that does not help apnoea), but not giving all life up yet…..just great food, going out to restaurants and being tempted must be put on the back burner, until I sit in the bath and see what I need to see, once this huge mountain in front of me disappears😀
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Oh yes…..when I first started and on 5/6 lots a day, about 2 weeks later, the cramps in my legs which lasted with intense pain for about 45 seconds, normally when just getting out of bed or stretching, were pretty painful. Then the eye muscle twitching started, and my hands started to lock up entirely and couldn’t move them at all. If I was holding a phone for instance or cutting up toast, they would just go into lock mode and the fingers would become gnarled and start curling..Horrible experience but over the months and this year in particular, rarely get them now thank goodness, but am down to just one tablet or when needed.
Mind you, in the early days and when cutting up the toast or whatever, this was mild in comparison to cutting my fingers several times, as everything was at least 2-3 inches to the left or right and not seeing correctly with the double vision.🧐
Onwards.
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Thx Cheryl and all……..so last post on this subject after kitted up, and then will report but……………………..
Bipap or Cpap?👃🕵😱
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Had both, no adverse reactions(last week 2 consec days of 900ml per day of IVIG) to either, but the plasmapheresis exchange worked like a treat for me as before that I coudnt talk properly swallow, eat and had breathing difficulties and within 5 days of treatments, cured all of that.
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Wow, congrats, that’s some procedure and glad its worked out well. Wonderful.
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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.
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interesting..thank you…..
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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Did the MG cause the CFS or have you had this before? Plus how is your vision as mine is deteriorating and quite rapidly. I have fluid building up in both retinas( macular edema and central serous retinopathy)caused supposedly by taking steroids. In March went to my eye person who said the fluid had increased slightly but since my vision was still pretty good(which it was at the time) didn’t want to do any laser treatment. Fair enough but the last month, I just don’t know what has happened as I was down to 5mg of preds but Neuro raised that to 7.5mg..
Wondered also if there was any connection to just recently(nearly a month now) been fitted with a BiPAP machine and the mask I have, a certain amount of air may leak into my eyes??) Anyone else have issues?…….anyway, sorry this possibly should have a separate thread as turned into my eye issue as opposed to CFS, which I am slightly better than previous, due to of all things, perhaps sleeping better as apneas greatly reduced.
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I go just around the corner there to Desai Sethi Medical centre where there is one of the best Neurologists in the Country who specializes in MG and this person has been fantastic if you need a rec just PM me.
https://umiamihealth.org/locations/desai-sethi-medical-center
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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!!!!
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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. 😁
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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!!! 😉
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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.🥂
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<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.
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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.
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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.
