Kerry,
You have received a good bit of chemotherapy and there is a phenomenon known as "chemo brain." It is associated with changes in the neuroimaging of patients. I have not read the following article in full (going on cytoxan myself) . However, it appears from what I have read in the past, as well as recently, to be reversible. It may be due to more than just the chemotherapy. I haven't seen any treatment suggestions to hasten recovery, but wonder if the drugs that work for cognitive impairment for other reasons might not be helpful as well as the general recommendations of a healthy diet and exercise--the secret to . . . (why do they always say secret?)

Here is the link: http://www.mdpi.com/1424-8220/13/3/3169

We have to remember that while we are getting therapy, the years are not standing still and there are other stressors beside MG and our therapy. I would prefer to ignore that, but reality and MG have a way of calling it to our attention. Hope you are recovering well from your thymectomy! hugs, b.

Hi Kerry hope you are recovering well...YES I have noticed alot of changes to my personality especially.....Im also a nervous person and have developed OCD as well...Im not sure exactly what from, prednisone, my chill pills as I call them??! But I remember one of the first things my neurologist said to me when I was diagnosed Jacki you will never be the same person you were! Didnt know what she meant but now I sure do..I do go to therapy but has not helped to much as of yet but still trying....Also gonna try a meditation class, hoping that might help a bit to....Just dont feel the same....And so true that as we are getting older other stressors besides MG etc are there....Hang in there...Hugs

When I'm not breathing well, I find myself very confused. For example, getting lost while driving a route I've driven countless times, or being unable to think of simple words. Thankfully, now that I'm a little more stable and my breathing is more sound, I'm not finding it to be an issue. I don't, however, feel as mentally sharp as I used to.

Definitely
Fortunately it comes and goes. Always worse when tired.

Kerry,

I just read an article about reversible cognitive dysfunction in a disorder that is very similar to MG. It is called autoimmune autonomic ganglionopathy and it's symptoms are similar to symptoms of MG only there is an autonomic component and severe orthostativ hypotension. Instead of the problem with ACTH at the neural junction, in AAG it is at the autonomic ganglia

The article talks about the cognitive dysfunction of working memory, executive function and sustained attention as being reversible in this case by plasmaphoresis.

http://archneur.jamanetwork.com/article.aspx?articleid=1150051

I have no knowledge if there have been paralell studies done for cognitive dysfunction in MG.

I would be interested tho in what others may have experienced who have some mental fog with MG and who have also experienced plasmaphoresis.

Marie

If I ever have plasmapharesis again (I really wish it were my treatment as I feel wonderful after,) I will have to make notes about brain fog. Happens often now and is often the worst right after IVIG.

Kerry absolutely MG has an effect on us mentally. I know when MG is flaring up or after IVIG I just cant think straight at all. As far as personality changes, I was wondering that myself, here though I believe in my case the stresses of adapting to MG affected my personality the most.

Long term stress really has a toxic effect on us us well and I know in my case it has changed my personality somewhat. Add to that the meds we take such as long term steroid usage which is known to cause personality changes. In your case the heavy duty chemo meds I cant imagine being benign mentally.

I hope you continue to heal and do better

Joe

Hi Kerry ,

I can certainly relate to that no doubt especially in my earlier years of my mg. I've always been that type "A" personality but like Jacki I'm borderline OCD and therapy for me wasn't as helpful as I'd hoped so its part of me now.

Also as time goes on I think a lot of frustration that we have with mg has changed as all in ways , some good and others not so good.

Stay strong friend , and don't ever give up..Cj

Without a doubt, yes. I am much better with treatment for the MG because prior to that I was afraid that I would have to find another line of work. People tend to get a little squirmy when you are coming at them with a needle and a look of bewilderment. I would forget what I was doing right in the middle of doing it. Thankfully, I was smart enough to step aside and take a more "behind the scenes" position to avoid those problems. Now with the medications, it is greatly improved. Due to my dyslexia, I've always had a bit of OCD but MG has pushed it a bit further. I've never been overly anxious but that has changed too in the last 5 yrs or so. I think by the nature of MG personality has to change. The cognitive issues area little different though. I think it largely depends on your treatments and medications along the way. Like bweeds, I think the chemo is a large factor in your case.

I hope that you are healing well and feeling better each day. Hang in there... we are all here for you. Hugs!!!!
Angie

This example of stupid courtroom lines of questioning I found while googling soon after my diagnosis:

ATTORNEY : This myasthenia gravis, does it affect your memory at all?
WITNESS : Yes.
ATTORNEY : And in what ways does it affect your memory?
WITNESS : I forget.
ATTORNEY : You forget? Can you give us an example of something you forgot?

My theory is that it is an over abundance of CO2 in our bodies that make us woozy/foggy. ~Joe

Kerry , sometimes the frustrations with our limitations take away our hope and joy also. bweeds has very good advise , in fact I wish she was my Doc. be well my good friend and rest , it helps. Charlie

When I'm really tired, I can't think of simple words. Words that I absolutely know and have been using all of my life simply escape me. Also confusion when doing a simple task that I have been doing without even thinking about it for years. Now I get confused. A very strange feeling.

Absolutely! I am actually very relieved to read all the posts! That means I am not losing my mind after all! :)
My personality has totally changed and I just can't remember things at all. Have resorted to writing down everything so I can somewhat keep track of it all. Also lose words mid sentence or forget what I started to say. I really do wonder which contributes most: meds or MG?
Thanks for posting this and wishing you healing and health.

Yes, Kerry. Medications! And combinations! - of medications!
Example: high-dose Prednisone. Only now, in tapering the Pred?
I can see for myself - the edginess. Personality change - more than a little!

I can also see, now: chronic-fatigue - and chronic lack of sleep? Caused all kinds of cognitive problems. - Ross

Not that I am aware of. Although I could always be happier!

I hope you are feeling more like your old self soon friend.

Best wishes for peace,
TJ