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Memory loss
Memory loss with MG.
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16 Replies
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I’m a 63 year old male always seemed to enjoy a great memory, I’m entering my 2nd year since being diagnosed with MG and definitely experiencing memory loss/brain fog as more time goes by. Not sure if it’s related to my MG or the medications associated in treating MG. No family related dementia history to lean back on…. My memory loss seems to come and go. It Can be great for a day or two and sometimes a week or two and then challenging for a week or two. I’m in the middle of my 4 week infusion cycle while I write this and find it much more noticeable during my infusion cycles. It makes it very challenging and concerning to continue employment with the high expectations of my job responsibilities. Is anyone else with MG experiencing similar symptoms while coping through MG and if so, does it seem to be more related to the MG illness or the MG medications…? Or possibly from the combination of both..?
Thanks
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My memory comes and goes quickly. I’ll talk with people and want to tell them a story and I forget what I was going to say, or walk into another room and forget what I wanted to do. I have no idea if it’s caused by MG or Pyridostigmine. Still seeing my Nero.
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Years ago I read Mestinon can cause memory loss. In my experience, that’s true. As my dosage increases, my memory declines but tends to get better when the dosage is decreased. Also, anything suppressing my immune system causes a low RBC and that affects my memory. Have your Vitamin D levels checked- it can cause issues. Best way I’ve found to help my memory is B12 shots and 50,000 units of Vitamin D weekly.
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Prednisone will also cause memory problems.
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I haven’t taken that for some time.
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I’m right there with you Mark!
Not sure if it’s meds or the MG!!
2nd year diagnosed and infusions too. Just finished 2nd round of Vyvgart. Age 55
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Also in your boat!!
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I have to reply to the memory loss posts. I am a 2019 MG crisis survivor diagnosed in 2012. I not only had to over come 6 weeks in ICU, trached and G-tubed, and 3 weeks in a Rehab to learn how to walk, talk, chew, and breath on my own. Now the new side effects of MG & covid 19, anxiety and depression. NOW I can’t remember anything. I walk into rooms, can’t recall why. If I don’t write it down right now, I will forget for sure. I will need to get up and go do something I just thought of. Don’t wait, cuz I will forget. I feel I have a acute case if A.D.D. I can’t make a decision or concentrate or focus sometimes. Is it meds or my MG. I have been on Pyridstigmide 180 mg. ER prednisone taper and Mycophenolate 2500 mg. since 2012. Started Vyvgart in Oct 2022, worked well for 50 of the 60 days as indicated, now I’m every 30 day infusions. Feeling better most of the time, but not perfect. Vyvgart is being blamed for my weight gain . I was 268 lbs in Oct 2022, now 308 lbs. Even after a weight loss during the summer months. My Neuro is concidering a diffent drug to replace Vyvgart.
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I wouldn’t like to speculate on the cause, but my memory loss has followed the same timeline as my MG
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Hi. I’m a 66yo GMG patient in my 18th year as a Myasthenic. My experience is that there are plenty of opportunities to experience memory loss with MG. The question is the cause. There’s no evidence that the neuromuscular manifestations of MG, in and of itself would cause memory loss. However, there is plenty of evidence that MG meds – particularly prednisone can have a direct cognitive impact. Further, that Prednisone, Mestinon and other meds can disrupt sleep, and memory loss is a surefire symptom of sleep deprivation. And finally, that how we cope as Myasthenics (particularly the challenge of maintaining a high-profile career) can certainly cause at least situational anxiety and depression. And there’s no question that depression can manifest as memory loss along with myriad other impacts. So the approach here is to drill down a bit and address what might be the more direct causes of the memory loss.
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I to have memory loss one example I forget the name of the person who is helping me fix
<font color=”rgba(0, 0, 0, 0)” face=”inherit”>a machine we are working </font>together , we I have been working together for 20 years . it may take
me about 1 to 2 min to remember his name . just little stuff like that I thought it was old ages I am 64 yrs. I will ask my neurology next time.
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yes
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I am 68 and first had a major MG crisis in 2010 after Swine Flu and was sedated, intubated and came out of ITU alive but unable to swallow for 18 month. I was eventually stabilised by Azothioprine and Predisolone from 2014. I had a few treatments before that, plasma exchange, IVIG which did nothing.Mestion did nothing while I was very bad, but has its significant uses. I have been fluctuating on high dose of 60mg daily of Prednisolone to 5 mg since that time but each time I start to have symptoms by 5mg to 7mg. I think this time I may just ask to leave it at 7.5mg as I keep reading on this forum of people still not having a stable MG with medication yet, and I am pretty stable. I also see they have updated the MyAware site about statins which might cause problems for MG patients, which I did refuse to take once as I read that some MG patients had problem, this was in 2017. They also mention 7.5mg prednisolone daily level is an acceptable long term dose if it cannot be tolerated lower. I did notice about 3 years years ago age 65 approx, after a few years of being at least a dose 5-10mg a day that my very, very short term memory was very poor. i.e. I would be taking my tablets from a packet as I had breakfast and if I was distracted by something on the radio, or a thought, I then could not remember if I had just taken a 1 tablet of the 2 azathioprine I was on for instance. I now put them in little boxes or put them all on a plate together ready to avoid a dilemma on this. I did read into this and I found the Prednisolone can cause short term memory loss so I put it down to that, as I had been on them for 10 years or more. After about 3 years now (age 68) my memory is getting worse with not being able to retrieve words I would normally have no problem with, although little often used words. So whether this is do to with natural memory loss due to age, potential dementia, or the Prednislone still I do not know. I also have very disturbed sleep due to neighbours in the gardens at night and humming noised in the flat above, I go to bed watching TV with my earphones on in order to block out noise and the agitation it creates. I am not getting the sleep I need for the last 2 years which is not good for the MG or potential dementia, so I am looking to to move but that is not easy. Complaining is a stressful option. But I think we all have to adjust as best we can, all react differently. The azathioprine has worked well for me though I have had skin cancer from it, but they all seem to have similar side affects. For instance I had a friend on azathioprine for a renal transplant for 35 years and she only started getting skin cancers after 25 years, and on the legs and back. Mine came after 7 years and on my nose and cheek. The Prednisolone gave me 2 cataracts after 5years.
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My VERY SERO-POSITIVE MG has been in remission … since I left my fifth hospital of 2020 on BLACK FRIDAY 11-27-2020. I am currently on 180 MGs daily of PYRID and 2000 MG daily of MYCOPH … that are my original diagnosis dosages. I was forced by the hospital to take 60 MGs of PREDN. It, along with STATINS, gave me MEDICALLY INDUCED DIABETES II, ONSET INSOMNIA, and WEIGHT GAIN (after losing over 42 lbs … 198 to 155 lbs being undiagnosed for 8 months by every doctor who saw me … a 3rd floor nurse diagnosed me and talked supervisors into giving me a neuro-consult and antibodies tests). So my new ENDOCRINE doctor tapered me off the NASTY PREDNISONE and LANTUS SHOOTING UP by 10-25-2021.
So I am stable and doing well. With only MG side effects of ONSET INSOMNIA and HEARING ISSUES still remaining.
As someone said above … what is causing what ??? Is it the MG or my MEDS ?
So I have been carefully taking my MEDS religiously … as I don’t know what HELPS me and what HURTS ME !! I can not get anyone to give me any PILL RECONCILIATION … closest is people who say go to http://www.DRUGS.COM … and that helped.
In regards to your memory questions, I have no issues at all. I remember everything !!! from 5 months in 5 hospitals … and for 8 months searching for any doctor … who could diagnose his way out of a PAPER BAG. The only foggy part is the first hospital from FEB 4-27, 2020 … THAT GAVE ME … a CODE RED … ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to an OVERDOSE of SEDATIVES, given to an undiagnosed MG patient for MRI TESTS. That landed me in ICU where I was under constant sedation with FENTANYL and MORPHINE till I was sent to second of five hospitals undiagnosed. So the first hospital is a TOTAL FOG, except for certain remembered dreams or reality ?? (THANKS TO PICNIC HEALTH RARE DISEASE RESEARCH REGISTRY FOUNDATION, they have recovered over 1600 medical documents for me on a website patient porthole, so I can now NAME, DATE, and DOWNLOAD for other doctors, what happened). I valuable my memory being perfect … but, because they gave me ONSET INSOMNIA also … it takes hours to fall asleep, and lying in bed … all I am constantly reminded of … is the horror stories of what I went through … trach, caths, pegs, enteric tubes, breathing tubes, IVIGs, IV’s, PICC lines, slitting my throat, no food/liquids to swallow for three months, not being allowed out of bed for three months & pissing/pooping all over myself, and having to relearn to stand and walk in therapy. So I still can’t fall asleep for but a couple hours, then have nightmares, and wake up … unable to fall back asleep. So I am glad I still remember, but I often wish things were more fuzzy.
The only concession that I keep, steady .. to keep me on top is … is to always put things back where they belong, have a regular covered tupperware food container to keep all your 5500 MGS daily of 15 med bottles in, a standard bin/bowl to leave your cell phone/charger/keys/wallet/10 inch tablet notebook in, and if you happen to garden … and have the water running outside, put a one gallon bottle of water on the kitchen counter to remind you the hose is on. I try to “multi-task” … to get at much done, during my strong periods, before I need to go rest for a while … so be RELIGIOUS … everything has a place and gets charged, and you have a medical papers briefcase to grab automatically, with all your medical papers and contacts, if you or anyone needs to grab it, when you are too weak to think or walk clearly.
I belong and ZOOM with 4, and during some months, 6 MG SUPPORT GROUPS. They all say the same thing … YOU NEED TO BE PROACTIVE, and BE YOUR OWN HEALTH QUARTERBACK … to stay alive and in REMISSION, as there are too many poorly trained/poorly up-to-date medical professionals, that don’t know what MG means in ENGLISH, even if you write it out completely for them to read (and goggle on their cell phones … like two of my DUMPED “doctors?? … always did, when ever I asked questions … such as is “……” a live or dead vaccine?)
STAY SAFE … WISH YOU ALL WELL !!!!
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REPLY TO Linda-g … and every one else …
Linda mentioned “MYAWARE”. As I said above, I belong and ZOOM with 4 to 6 MYASTHENIA GRAVIS SUPPORT GROUPS regularly. MYAWARE is www. MYAWARE.ORG Go visit their website, as it has been a continuous godsend of information to me. I try to ZOOM with them monthly, even though it can be difficult, timewise. I live in ARIZONA, USA and MYAWARE is the main MYASTHENIA GRAVIS Support Foundation in the UNITED KINGDOM. So I have to ZOOM in to their meeting, 7 hours ahead of their posted meeting LONDON TIME. Their website is TERRIFIC to every MG patient world wide. They have all the MG PAPERS you could ever want. I keep downloading and printing these papers out to give to my CLUELESS/POORLY EDUCATED AMERICAN DOCTORS, who probably specialize too much … know a lot about one area … and little about other areas of medicine and ACCURATE DIAGNOSING.
MYAWARE has the usual MEDS DANGEROUS TO MG PATIENTS lists, … but this special MG support group makes the extra effort of having on their website … INFORMATION SHEETS to download and hand out to each type of person that you need…. PARAMEDICS, 911 crews, EMERGENCY ROOMS, Hospitals, DOCTORS delivering babies of mothers with MG, DENTISTS working on MG PATIENTS, and ANESTHESIA PROVIDERS who don’t know how easy it is to overdose and kill an MG patient with sedatives, when my breathing is already SUPPRESSED.
So please visit their website … and download any INFORMATION SHEETS they have. YOU NEED TO BE INFORMED to INFORM YOUR MEDICAL PROVIDERS … in order to STAY ALIVE and in MG REMISSION. YOUR LIFE DEPENDS ON IT !!
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I’ve noticed that any memory issues are tied to fatigue, both due to MG and amount/quality of sleep I get regularly. I recently got an Apple Watch that tracks blood oxygen levels and found my levels often dip below 90 (lowest was 78) around 1 am and 4 am. I had a sleep study 5 years ago but couldn’t tolerate the head gear and didn’t sleep. I am going back to my doctor with the new data in 2 weeks.
For those of us with smart phones and watches, I’ve found using some of the features helps me remember when I’m tired. I use them to set timers, reminders and leave voice recordings for myself.
I also set up medication reminders on my devices and I dismiss the reminder as I take my meds. My pharmacy packages my pills in pouches that have a date and time on them so I know if I’ve taken them or not. The pouches tear open easily whereas my mycophenylate is packed in bubble packs and it’s hard to push the pills out twice a day.
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