Personality changes in spouse with MS. Feeling lost.

[KerryLyn]

I have a long story, but one I hope you all will read through because I feel completely lost as where else to go for help.

My husband got diagnosed 4 months after we got married. His response to the diagnosis was to push everyone out, including me. We tried couple's therapy, he wanted to separate, then wanted to divorce. We're trying to work things out currently - we didn't go through with the divorce. We live in separate houses close to each other.

He almost immediately had a sudden shift in personality although his doctors say he's had MS for at least 5 years. It's been a year since his diagnosis, and I have concerned for his mental health and well being.

- His personality change has been profound. He is/was aggressive (pre-mental health treatment) and narcissistic (pre and post mental health treatment). He's suicidal on Tysabri without his antidepressants. All of this things are new parts of his personality that I would have never in a million years expected to come from him.

-After the diagnosis, we were fighting, as couples do when something this heavy falls on them. However, he was blaming everything on me. Friends said it was like he had to lash out at something, and that something was me. Again, not like him at all. He claims he felt abandoned not matter what I said to him. I had absolutely no intention of ever leaving. Period.

- He started lieing to his close friends about me. Saying things about me that were blatantly not true. Close friends (one of which has had MS since he was 15) talked to me about these because they seemed so far fetched. His friend with MS said it was like he was trying to justify divorcing me.

- He started to really argue with me about how much we weren't having sex (pre-mental health treatment). The night he kicked me out of the house, this was a large part of the yelling at me (again, something he had never done in the 7 years we'd been together. We never yelled at each other). It also included other things. He has no memory of this event all.

- We have been in couple's therapy since the diagnosis. We agreed to a separation to try to work on the marriage. He kept saying he wanted to see action from me (what I was doing to work on the marriage), but he wouldn't listen to any of it even during therapy and said he wanted a divorce. Present day- he doesn't remember the reasoning why we agreed to a separation. It was for working on the marriage (I wrote it down because I write everything down) and he says it wasn't. The therapist did not correct either one of us, just tried to help diffuse the situation.

- The above is all pre-mental health treatment. He's on antidepressants which have their own set of side-effects.

- He's not eating. I have been trying to reach out to family, as his mom is a dietitian. I honestly believe he has an eating disorder at this point. He's wasting away. Food doesn't taste the same anymore (the MS), but he also makes excuses to not eat very reminiscent of eating disorders.

- His memory loss issues have been alarming at times, and I wonder if they aren't tied a bit to his not eating.

- His friend with MS said that, a month ago, that he said he wasn't interested in the marriage. This is in complete contrast to what we are working on in couple's therapy (even a month ago). His friend compared him to someone with dementia.

- His family is in a bit of denial about his prognosis. My family is one to talk about death and what to do when we can't help ourselves, so it's been hard to talk about these things with them. When I mentioned that I accepted being a caregiver she freaked out. She couldn't understand that you can be a caregiver and a wife at the same time. I don't talk to her much anymore.

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That is the background of all of this. I've tried finding MS meetup groups in my city to no avail (I'm going to start my own once I get paid again, a close friend of mine is also concerned and wants to join with me). I've talked with close friends but they are getting frustrated. I'm getting frustrated. My next step is to talk with his neurologist now that we are really trying to make the marriage work and I am taking more of a role in his healthcare.

I know this is only part of the story. Some close friends are telling me to walk away (including the one that has MS), while other are hoping that further treatment and therapy will help him cope. He says he loves me, I'm his best friend, and he want to make it work. That is recent-ish. He hadn't said "I love you" to me until maybe a month or two ago. And it's only been in therapy. We have been in this weird relationship limbo because I'm scared of getting hurt again, and he's scared. We've just now decided to push forward, slightly, out of limbo. It's been hard though - dealing with his symptoms can prevent any opportunity to talk or even just cuddle (his current anti-depressants give him vertigo).

This is going to sound very self centered, but I have put a ton of work into this relationship. I have not given up on my husband and don't intend to as long as he says he wants to work things out. If he wants out then he wants out. But this whole process has left me wondering who to trust, what to believe, and how to trust again. I'm an emotional wreck- I see a therapist, but I've accepted I need more help and need to see a psychiatrist to deal with all of this. I feel completely neglected and no matter how much I say that it's like he doesn't absorb the information.

If you've read this far, thank you. I know this is a bit of a mess, and only part of the story. I'm writing to ask for people's take on this information. I feel like I'm screaming at brick walls - am I going crazy? Am I crazy for sticking through all this? Does MS really do all this to someone? His is friend with MS right when he says that part of it's MS and part of it is that he's just a dick now? How do you deal with difficult mental health issues combined with MS?

I do have a good support group of friends. My own family is supportive. My husband has a good support group- albeit people are getting a bit frustrated and they don't always know how to handle MS. They try. My social circle is full of good people, but I haven't met anyone who has dealt this this type of situation before.

[jimmylegs]

hi and welcome

sorry to hear you've been going through a rough time.

i can empathize with your personal situation and wonder if, given the dietetic expertise in your husband's family, whether he is open to taking a closer look at nutrients that are typically lower normal in ms patients than in controls and which are correlated to things like mental health and even sex drive.

i am not a dietitian myself, but after 12 yrs of immersion in the academic literature as it pertains to ms and other chronic disease, i can provide links to relevant research and resources if you think your husband would be interested.

[David1949]

What kind of MS symptoms did your husband have? Were they severe or mild? Did it effect his walking ability, or vision , or something else?

Being diagnosed with MS is a huge shock for anyone. It can certainly cause mood changes. But Tysabri is potent stuff. Depression is a known side effect. It can also cause PML, a rare form of brain infection which is frequently fatal. You might want to ask the neurologist if he could be on some other medication.

[KerryLyn]

What kind of MS symptoms did your husband have? Were they severe or mild? Did it effect his walking ability, or vision , or something else?

Being diagnosed with MS is a huge shock for anyone. It can certainly cause mood changes. But Tysabri is potent stuff. Depression is a known side effect. It can also cause PML, a rare form of brain infection which is frequently fatal. You might want to ask the neurologist if he could be on some other medication.

It's a bit of a long list. He has RRMS, but nothing has really "bounced back". He had a motorcycle accident before we met that left him in chronic pain in his leg (he's got a metal rod in it). The pain killers he was on were hiding many of his MS symptoms, so he didn't get diagnosed until things got pretty bad. So he can chronic leg pain on top of MS. His mobility issues weren't really noticed because he already has that due to his leg injury.

Off the top of my head, but this is not an exhaustive list:
- mobility issues (MS and his leg)
- vision
- numbness / grip strength
- sexual function
- he hiccups a lot (which according to his doc is a MS thing)
- fatigue (which could also be the antidepressants on top of the MS)
- short term memory loss
- personalty changes
- appetite / food tastes different


He does get tested for PML every 6 months because he's on Tysabri. So far he's been negative.

[KerryLyn]

hi and welcome

sorry to hear you've been going through a rough time.

i can empathize with your personal situation and wonder if, given the dietetic expertise in your husband's family, whether he is open to taking a closer look at nutrients that are typically lower normal in ms patients than in controls and which are correlated to things like mental health and even sex drive.

i am not a dietitian myself, but after 12 yrs of immersion in the academic literature as it pertains to ms and other chronic disease, i can provide links to relevant research and resources if you think your husband would be interested.

It's been real hard to get him to listen to anyone. When friends and family try to bring up him not eating (gently), he gets super defensive.He gets narrative in his mind and doesn't try to see outside of it. It's been incredibly hard to try to break through that. I gave him a book on MS once on the suggestion from someone with MS I had been talking to (this is pre-mental health treatment) and he was offended. So giving him research papers and resources wouldn't really work. I would love to look at those if you have them though. It is something I can show to my therapist and we can try to bring it up to him in that kind of environment.

I think he tastes some Vitamin D supplements. As far as sexual function goes, he's got a lesion on the the spot on his spine that erections. As far as sex drive goes - toward the end of us living together he was accusing me of not having sex enough. He was being unlike-himself aggressive about it. That completely blindsided me as he never talked about it in therapy. We were having problems around the time we were getting married, but it was because he was developing all these MS symptoms that were causing issues (that we didn't know about).

[ElliotB]

Ultimately there is no way for you to know what is going on in his head.

My brother, who also has MS, is highly social. I am the total opposite and frankly just want to be left alone as I don't feel well most of the time (this has gone on for 4+ years although I have been doing better in the past month) and the last thing I want to do is socialize when I am in pain or have a general feeling of not feeling good. When I am not in pain or don't have that sick feeling, I do fine socializing. Everyone has different symptoms and responds to them differently.

I will use this very simple analogy that may help you to have a better understanding. I assume you have had the flu or a really, really bad cold at some time. Imagine feeling that way most of the time and having to be social. It would not easy! Your husband is likely dealing with far more, certainly far more than just a flu or a cold, And he may not even be telling you everything he is feeling. And he may not even be able to describe what he is feeling.

There is no simple answer to what you should do, but for your own well being you may have to make a major change in your relationship now which may seem extremely difficult to do but may best for you in the long run.

[jimmylegs]

hi again,

sorry to hear he's not feeling receptive to input.

also sorry to hear he's not eating well. intense nutrient therapy went a long way for me - and fast - in the early months. slower and less frequent gains as time went by, to the point that i don't have issues unless i stop taking care of myself. not on any meds so far.

here are nutrients typically low in ms patients and linked to relevant items on the symptom list (i'm being very simplistic here)

- mobility issues (MS and his leg) (b12, magnesium)
- vision (zinc)
- numbness / grip strength (magnesium)
- sexual function (zinc)
- he hiccups a lot (which according to his doc is a MS thing) (magnesium - spastic diaphragm - see study link below)
- fatigue (which could also be the antidepressants on top of the MS) (magnesium, zinc, d3)
- short term memory loss (zinc)
- personalty changes (magnesium)
- appetite / food tastes different (zinc)

these are a few of the nutrients i would consider low hanging fruit, ones that are either understood in the mainstream to be an issue for ms patients, or which in spite of not being standard practice, have well known issues with reference range definitions meaning deficiency symptoms often occur in patients with 'normal' levels.

of the handful of nutrient tests relevant to ms patients, your husband may already had had serum b12 and serum d3 run. is he taking d3 on the doc's recommendation? if so do you know how much? do you know if he is taking any other complementary nutrient products? cofactor depletion (especially magnesium) is an underrecognized side effect of higher dose vit d3 supplementation.

one sample case study:

Gabapentin for intractable hiccups in a patient undergoing peritoneal dialysis
http://www.pdiconnect.com/content/28/6/667.extract
"Hiccups are involuntary, rhythmic, spasmodic contractions of the diaphragm. ... hiccups became frequent and severe enough to produce insomnia, anorexia, and weight loss. His other medical problems included hypertension, ischemic heart disease, gout and anemia secondary to ESRF. ... Laboratory investigations were as follows: .... magnesium 0.66 mmol/L ... gabapentin was further increased to 600 mg nightly, leading to the hiccups disappearing over a 3 month follow up period"

0.66 mmol/l is not good... at some labs locally, the lower serum mag cutoff is 0.70 mmol/l. perhaps if that range had been used in this context, the patient in question might have had his deficiency address and might have achieved some relief. at other local labs, the lower serum mag cutoff is 0.65 mmol/l.

i guess that's the range these researchers were using too. they appear to have drugged the hiccups out of this poor man, without addressing very low normal serum magnesium status - likely for fear of magnesium 'excess' due to the dialysis context. i'm not an expert but to my mind it makes next to no sense to keep serum mag circling the drain.

much better to aim for the upper end of the normal range, whether 1.05 mmol/l or 1.1 mmol/l, where the levels of healthy controls tend to be concentrated. for anyone not currently undergoing dialysis, this will much more certainly be the case!

i need a break but can revisit with more literature links later on

[KerryLyn]

hi again,

sorry to hear he's not feeling receptive to input.

also sorry to hear he's not eating well. intense nutrient therapy went a long way for me - and fast - in the early months. slower and less frequent gains as time went by, to the point that i don't have issues unless i stop taking care of myself. not on any meds so far.

here are nutrients typically low in ms patients and linked to relevant items on the symptom list (i'm being very simplistic here)

- mobility issues (MS and his leg) (b12, magnesium)
- vision (zinc)
- numbness / grip strength (magnesium)
- sexual function (zinc)
- he hiccups a lot (which according to his doc is a MS thing) (magnesium - spastic diaphragm - see study link below)
- fatigue (which could also be the antidepressants on top of the MS) (magnesium, zinc, d3)
- short term memory loss (zinc)
- personalty changes (magnesium)
- appetite / food tastes different (zinc)

these are a few of the nutrients i would consider low hanging fruit, ones that are either understood in the mainstream to be an issue for ms patients, or which in spite of not being standard practice, have well known issues with reference range definitions meaning deficiency symptoms often occur in patients with 'normal' levels.

of the handful of nutrient tests relevant to ms patients, your husband may already had had serum b12 and serum d3 run. is he taking d3 on the doc's recommendation? if so do you know how much? do you know if he is taking any other complementary nutrient products? cofactor depletion (especially magnesium) is an underrecognized side effect of higher dose vit d3 supplementation.

one sample case study:

Gabapentin for intractable hiccups in a patient undergoing peritoneal dialysis
http://www.pdiconnect.com/content/28/6/667.extract
"Hiccups are involuntary, rhythmic, spasmodic contractions of the diaphragm. ... hiccups became frequent and severe enough to produce insomnia, anorexia, and weight loss. His other medical problems included hypertension, ischemic heart disease, gout and anemia secondary to ESRF. ... Laboratory investigations were as follows: .... magnesium 0.66 mmol/L ... gabapentin was further increased to 600 mg nightly, leading to the hiccups disappearing over a 3 month follow up period"

0.66 mmol/l is not good... at some labs locally, the lower serum mag cutoff is 0.70 mmol/l. perhaps if that range had been used in this context, the patient in question might have had his deficiency address and might have achieved some relief. at other local labs, the lower serum mag cutoff is 0.65 mmol/l.

i guess that's the range these researchers were using too. they appear to have drugged the hiccups out of this poor man, without addressing very low normal serum magnesium status - likely for fear of magnesium 'excess' due to the dialysis context. i'm not an expert but to my mind it makes next to no sense to keep serum mag circling the drain.

much better to aim for the upper end of the normal range, whether 1.05 mmol/l or 1.1 mmol/l, where the levels of healthy controls tend to be concentrated. for anyone not currently undergoing dialysis, this will much more certainly be the case!

i need a break but can revisit with more literature links later on

This really helps, thanks! I'm going to talk to his neurologist something in the near future, and I can add this to my list.

[jimmylegs]

ok sounds good - just be aware that this kind of info occupies the vast gap between research and practice; between public health messaging and clinical care. dietitians aren't neurologists, and vice versa.

dietitians don't even really hang out in the research space discussed here. in my limited xp, the dietitian's wheelhouse is maintaining health for joe average. definite value to their efforts, but as an ms patient the dietitian i had access to could not answer my questions about nutrition. the answers had to come from the academic literature. at times that has involved waiting for someone to occupy an existing research gap. frustrating!

at the end of the day, sometimes restoring health to a patient requires extra nutritional punch. if supplements need to enter the fray, so be it.

hope everything goes well with the neuro!