My husband was diagnosed with Multiple System Atrophy and Mild Cognitive Impairment six years ago. MSA effects the autonomic system and progresses from can to walker to wheelchair to bed. Presently, he should be using a walker full-timebut won't and I think in several months he will be in a wheelchair. He is in pain from the MSA and ha begun to have hallucinations. I think his Mild Cognitive Impairment has become worse and it is just a fancy word for dementia. He is on several drugs including Effexor for depression. I need advice about handing his mood swings - the ones where he says very nasty, hurtful things and sometimes grabs things from me that he shouldn't have. When he sees the neurologist (about every two months) I feel disrespectful talking about him as if he isn't there. I also can't get the neuro to reevaluate him for drug interaction and possible dementia. The dr keeps saying that some of this could be from the drugs but won't do move than that. What to do?
MSA does NOT show up on brain scans. Unfortunately the only diagnosis can be made post mortem.
Not every neurologist is qualified to manage patients with MSA. It took us years to find one and he and his team are always adjusting MIL's meds. I suggest you get your husband a second opinion at a teaching hospital that has a Parkinson's or Movement Disorders practice.
There is the MSA Coalition and they have an annual conference. Check out multiplesystematrophy.org
I cannot emphasize enough that physical activity is very important for your husband. Keeping him moving, getting him into a PT program, will SLOW down the progression of the disease.
Your husband may not have cognitive impairment at all because MSA and cognitive impairment do not automatically go together. Again - you need to get a second opinion.
If he is depressed that is understandable. However, antidepressants are only going to numb him and not help him deal with his illness. Denial is not going to make things better. My MIL fights every single day and I am so proud of her for not giving up. MIL hoped she would be a candidate for a clinical trial for brain pacemakers but was determined to be too frail and rejected. But your husband may be able to avail himself of new therapies.
That said, MSA does get worse and one day your husband will become bed bound so you should ask him now what his wishes are - DNR, feeding tube, etc. But one day can be 5+ years away!
I'm very sorry that your husband has this illness. If you want to talk more about this offline please send me a message. I'll share with you what I've learned the first and most important lesson is to not give up.
I said NO, and I paked a couple bags and gathered up the kids and hit the road with them, stayed with friends, called our pastor to help talk Henry into getting back to the doc and did not return home until a medication change was made (from SSRI to TCA) which got him settled down and OK again. At first he asked me how long I was "going to play keep-away" with the kids and I made it absolutely clear that it would be as long as we needed to prevent abuse and keep everyone safe. I honestly do not remember whether it was Effexor or something else, but it certainly did seem to work backwards after an initial improvement. He eventually did some counseling and tapered off all meds and has been pretty much OK. He never did agree that their should be consistent expectations for behavior that did not depend on his mood at any given moment, he said he thought that things needed to be flexible. Our parenting suffered from that and these are not happy memories, as that meant that with him the kids had to constantly test the limits to find out where they were that day. That's what it took to get his attention and make him change what he was doing; he has always tended to go back to what he was doing before, but this never went to the point of physical abuse again.
psychologytoday/blog/evolutionary-psychiatry/201104/your-brain-ketones
Yooutube also has many good sources of information on the ketogenic diet, as well as "keto" recipes.
If your husband is unwilling to change his diet, consider adding coconut oil and natural butter (preferably grass-fed, like Kerry Gold) to his food. You can add coconut oil like you would butter--in oatmeal, on vegetables, etc. You can also get coconut oil in capsule form. It's more expensive but worth the cost if that's the only way he'll take it.
No doctor should be insulted by the fact that a patient wants a second opinion, but you don't have to mention it to him. If you need a referral, ask your husband's primary physician, just stating that you'd like a second opinion because of the complicated nature of the illnesses.
It wouldn't surprise me if the drugs used to treat the MSA are making the MCI worse. Not all MCI leads to dementia, though it often does. Drugs that affect the brain can push a person in that direction. It's possible that there is no other choice but it doesn't hurt to see if another doctor is aware of an alternative option.
My heart goes out to you, as the caregiver, with all that you are going through. Please update us on how you are doing.
Carol
It also sounds like hubby needs updated cognitive testing - it's very possible that the MCI has developed into a dementia (esp hearing about his hallucinations mood swings) - has his memory also deteriorated? MCI isn't a fancy word for dementia - it just means the person diagnosed doesn't have dementia at the time of testing.
How was he originally diagnosed with MCI? Neuropsych testing is generally recommended first for a baseline and then every 1-2 years for changes. Why wouldn't the doctor investigate whether the changes are medication related or resulting from a dementia? Perhaps his neurologist might be the best MD for his MSA but I tend to think when it comes to cognitive changes & dementia, you are best served by a memory disorder clinic team. Good luck!
I was on Effexor for a few months and know all about withdrawing from it. In my case, I resorted to opening the capsules and emptying a few grains from them every day, until I was emptying half the capsule. Eventually it worked and now I'm on Celexa. I know that some doctors don't prescribe Effexor anymore, for that reason, and also the possibility of getting serotonin syndrome (which I had). A bad drug for many people.
MSA sounds like a dreadful illness. Hugs to you.
If the Dr. thinks your husband's behavior may be from the medications have you asked the Dr. why he won't adjust the meds? I think this is a question you could ask in front of your husband if worded right.
Have you tried putting in a call to the Dr. with a question? Or making an appointment specifically to address your husband's behavior? Is there someone you could bring to the Dr. with you so you could step out into the hall with the Dr. to speak to him while someone stays in the room with your husband?
Beware of the Effexor. It has physically uncomfortable withdrawl symptoms.