Personality changes, Emotional issues

[seeknpeace]

Hello,

I am struggling with emotional responses to MS.  I was diagnosed in 07 but the process began in 06.  In 08, I had a huge confession dropped on me regarding my spouse of 37 years that destroyed me.  With all that said, prior to that, I lost both breasts to cancer in 04, my father died in 07, I had a seriouis bout of ischemic colitis in 06 with a ten day hospitialization, the breast cancer forced me to close my busines of 9 yrs and train for two corp jobs in one yr at 51 years of age and end up working for an absolute tyrant, that I finally escaped, so that when the disclosures from my spouse in 2008 came along, I completely had a melt down.

Here is my question.  I cannot recover, I have been in the hosp, I am medicated and yet and still I cannot find my way back to me.  I feel alienated from myself, my family, my spouse, etc.  I cry at the drop of a hat, or can become enraged.  The confession covers 30 years and 6 friends.  So, I am stuck in a backward loop.  Forgiveness is an alien concept to me, and I was never this person in my life.  I struggle to be around even my family.

My MS is progressing, numb hands, feet that are freezing cold, and when I was given oral steroids recently I was amazed at how wonderful I felt, and also at how horrible I feel, I have no life source in me.  My fatique is life consuming.  While on the steroid, I felt like a different person.  I then knew a lot of my inability to recover was my MS.  

I have been on betaseron, and my Dr. is recommending tysabri and I am not comfortable with this drastic of a change.  I would like an opinion from my peers, I would like to know if any other of you have experienced this type of change in your personality.  I went out of work on permanent disability as I could no longer perform executive functions and for that I am grateful, I was able to get out from under this horrible man.  Who was fired later.  I am still with my  spouse who is in deep therapy for sexual addiction and moves heaven and earth for me.  I do know thta he loves me and I  do understand that he is sick and I do believe that he lives with deep regret and remorse and would never hurt me or our family this way again.  

Please tell me about yourselves...

[seeknpeace]

I was reading the Tysabri info that the doctor gave me last night after all of our convos, and I have to say that it is a new drug and has not been studied longer than two years according to their own literature, so that is not correct that it has been around for awhile.  They are uncertain what to expect.  While yes, it is dangerous as to the PML, I want to understand the JC virus more, are we really sure that if we have not been exposed we are safe, and how did they come to that conclusion.  I don't want them to say, oops, in two years, we thought so, but guess not while I am really wasting away and dying from PML.  While MS is progressive there is not a 100% guarnatee that it will get me to the completely immobilized state because no one knows what course it will take.  I am just sounding off here so bear with me.  The side effects as listed in the literature for Tysabri are as follows:

(these are listed as common side effects in their literature)
headache
urinary tract infections
lung infection
pain in arms and legs
vaginitis
stomach area pain
feeling tired
joint pain
depression**
diarrhea
rash

These are things that I battle with MS, and this did not seem like a cure to symptoms,  but rather an addtion or that it is the same same.  

Also, as all that other stuff that I had read, it is only recommended when all else does not work.  Has anyone thought about what you will do when the golden window of two years closes?  I know that on some of these meds, you CANNOT go back to the others after taking them, and with some you have to wait 6mos, a yr, etc.  

This is why this is scary to me.  My very neurologist who is recommending this was NOT doing so a year ago.  I know that things change but can anyone tell me how much research you did before you started this?  I know that we have to trust our doctors, but I have already been down the road where if I had done so I most likely would have died from cancer so I have to advocate for myself and meds scare me.

THe rates of remission are much higher than stated in trials but that one niggling thing, that one thing, PML, is a deal breaker for me.  Along with the fact of other serious infections, and add them to the common side effects.  betaserons common side effects are not as bad, but it may have stopped working for me.  That is my fear.  And I have to do something.  But, I am not sold on Tysabri.  Not yet.  

[michelleric]

Welcome Jan,

Wow, you have had your fair share of losses and grief.  I am so sorry.  Life sure isn't fair sometimes...

As far as switching your meds.  As Quix said, the interferons can produce depression, and I  would get off of it ASAP.  My neuro put me on Copaxone, due to a history of depression at times, and the known depression "factor" of the other interferons.   I would really recommend getting off of the Betaseron. Just my opinion though, and I am no doctor, so it is only an opinion based from myself and from my Neuro.

I too was offered a different DMD, as Copaxone was not doing the trick.  I will be starting Tysabri soon.  Yes, it is a hard choice, but at this point I am willing to try it.  I tested negative for the JC virus, so the thoughts are it is "safe" for me, at least for a year, per neuro.  I don't know what will happen after a year, but we will see what it brings.

As far as the steroids you asked about.  I have had 3 bouts of Solumedrol with a 12 day taper afterward.  My most recent was lat month.  I felt GREAT for about 2-3 weeks.  Caught the bug that was/is going around my house. I am going to PCP later today. I feel so sick right now, can't sleep from a severe sore throat.

So, I am pretty sure the steroids brought my immune system way down, and I am paying for it now.  I will once again rethink the steroids for next time.

I saw my neuro about 2 weeks after the steroid infusion.  I was looking to best I have ever been, according to her. (I definitely agreed). She said from the excellent response to the steroids, the Tysabri was a really good choice for me.

Well there is my 2 cents on the meds you asked about,

Welcome again,
Michelle

[seeknpeace]

I have not read the steroid stuff yet but I am going to.  The same friend who had the steroid therapy also ended up with advanced osteoporosis.  She told me that she should have been taking a lot of calcium w/vit D and no one told her.  Now, because of this, she cannot take anything for her MS and she is deteriorating.  So, that may be one of the things that you are referring to.  If I were to considering the steroid thing, I know to do that at least.

I did go into the psych ward of a local hospital, and had the displeasure to share a floor with either meth addicts, alcoholics or elderly ppl who had been just dumped there by family.  The elderly were just almost tied into chairs in front of a inadequate sized TV all day long, left in their pjs.  Unless they knew family was coming.  Then most all were cleaned up (their food was all over them) and dressed to a degree.  Horrible.  Comments like "yeah, my pit bull was cool, when he was just a puppy he could beat up a poodle", so you can imagine.  I checked out asap.  It also was a teaching hosp and they would see me, the gaggle of students, and then stand in the hall and review me.  I finally screamed "I can hear you".

So I went to a private one and it was way worse, the therapist was on vacation, no one had therapy the entire week, the food was almost inedible, the place was filthy and almost everyone there was brought in a police car except me because if they went to the hosp. and wanted help for substance abuse, if they allowed the police to bring them there in that fashion, they qualified for a special program that paid for their treatment.  Art therapy was coloring sheets from a book with markers while listening to Pink Floyd.  Exercise time was playing WII.  It was a nightmare.

So if I go into a facility, it will be a really nice one, not a treatment center for drugs, or addictions.  Period.  This is why it is so important for me to understand what is going on with me.  If this is a physical problem manifesting this way because of MS, I do not want to waste money.  I will be limited as to aerobics and a lot of the things that are offered, and most of the places are in the desert, Utah, AZ, etc.  So we are talking hot hot climates and we know what that will do.  

I am so confused at this point, I want to run away.  I really have never been in this place.  Ever.  Being afraid of Tysabri is me, I have a difficult time taking most meds, and changing to new ones period, add to that one that can be fatal, and I am on high emotional alert.  

This is a huge deal for me.

One other thing, do you guys freeze, like your hands and feet?  And do you go from being cold to hot a lot?  This is not flashes, been there done that.  And my body temp is from normal to 100 all the time.  Can our whatever glands that control that, can any of that be messed with by MS?

Thank you for your help.  I have been on the board for a long time but I joined and then went away.  You do not know how badly I need you and so does my husband..

Jan

[Saadbell]

I know exactly how you are feeling; I was diagnose almost 15 years ago and was started on betaseron when it was still on the lottery system.  Did the beta for about two years and decided that I was fine and stopped.  I put MS behind me and low and behold about 4 years ago I started to have seizures and my personality started to change.  I finally went in and after an MRI I have a large lesion on my brain which has affected my personality and I too cry at the drop of the hat. You are not alone, I am in the trench with ya girl.  My husband left me so yea can’t win the lottery and get millions but I sure can get this horrible disease. Just know you are not alone, and depression, oh yea, I have always dealt with depression but this depression is on a whole other level.  It is hard to describe it to people, so I just don’t.  Just hang in there better days will be coming.

[essdipity]

Hi, Jan. Welcome to the forum. We'll do our best for you, despite the many issues you are facing, and hope that in some ways we can help. You have already been given some good suggestions so I won't repeat them.

I do want to say, however, that steroids very much have their pros and cons. A frequent diet of heavy steroids is never a good idea. Please see our Health Page on this---

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Steroids---Friend-and-Foe/show/365?cid=36

As a matter of fact, take a look at many more Health Pages for well-written, reliable information.

I do understand that it's hard to separate the mental health issues coming from your life circumstances and those caused by MS, but maybe that difference doesn't matter. It seems that your mental state is what's bothering you most, regardless of cause, so I urge you to find the best possible health resources. If you need it and can afford it, maybe you should consider a month or two away in someplace pleasant, not a hospital, just a low stress place where you can get a lot of therapy without the stresses of home and family.

By the way, Tysabri is not new, nor would you be a guinea pig. There are risks, of course, but under a good doctor I myself would feel safe.

It may be that you won't get all of your old self back, but try to be welcoming to your new self. You have been through an enormous amount, and though you're down, you're not out. You are a survivor. I am too, and that helps me not to worry about the future.

Please keep in touch.

ess

[seeknpeace]

Thank you so much for your insight, and as an MD it helps me even more.  I started my career as a stock broker in 1993 with Dean Witter and migrated to opening my own company in 96.  When forced to close it in 2004 due to my breast cancer I was devastated and at 50, I was not willing to build another book of business so I went to work at a bank for six months, then to another where they promoted a boss into our department who was ill equiped, could not pass licensure, was intimidated and tortured me constantly.  When I was diagnosed with MS finally, I was relieved to know what the h*ll was going on, I was pretty messed up, and the betaseron really helped, and I was glad to have the disability insurance, as it provides me with an excellent tax free income until 66 when I will then get a pension from them.  However, I am really afraid of Tysabri.  My Dr. is going to check me for the virus.  I do understand that my risk is nil if I have not been exposed to that virus.  And that they will test me for exposure every six months.  But what happens when the two years expire?

And, this is all so new, what if they have it all wrong, and this virus thing is not right?  I just do not want to be a guinea pig.  The brain disease is so serious.

I am so afraid of losing mobility.  I can hardly climb stairs now.  And walking is difficult.  I never thought I would end up here.  My doctor calls these symptoms "nuiscances" of MS.  They do not seem that way to me, they seem to be symptoms leading to immobility to me.  He checked my cervical spine and I do have lesions there.  My spelling is horrible, sorry.

My mental health is awful.  I go to sexual addiction codependent therapy weekly and individual therapy as well and I am looking at inpatient.  But, only at a really nice place, not a psychiatric hospital.  They are all substancre abuse now.  I have a few options and I plan to make a decision.  

One other thing, does anyone on here take provigil or ritalin and does it help?  What about neurontin?  Does it help with the pain?  

Thank you so much for your comments and help.  One thing that my doctor has not addressed for some reason is the connection between emotional issues and MS, the direct physical changes that can happen from lesion activity causing damage, etc.  I have asked him with no success, and it has always made sense to me that this can be a real possiblity.  And I do know that betaseron is not good for depression.  I was already being treated for depression way before MS, for years.  I was told years ago that my depression was one that would have to always be treated.  I could never come off of meds.

One other thing, I have a friend who has gotten steroids by IV and then taken a round orally and she says that all her symptoms are abated for up to 6 mos.  Has anyone else here had this treatment?  

Jan

[Quixotic1]

Welcome to our family and I am so sorry for the wagonload of poop that life has dropped on you.  What a mess!  My MS appeared during the three years of a move, new job, nasty divorce, bankruptcy and it was what knocked me out of my profession of 23 years as a pediatrician.  I truly was years coming to terms with those losses, so I have an inkling of what you are going through.

I hope you are in frequent counseling.

I think the worst possible med for you would be one of the interferons.  One of their major side effects is depression.  This is unfortunate because MS causes depression directly by its effect on the workings of the brain.  On top of the situational h*ll you are in, the Betaseron may be making it worse.

Tysabri has helped an enormous number of people.  Yes, there is a warning of one in 1000 chance of serious brain infection with damage or deat, but that has to be balanced against the 100% chance that MS is taking your function from you.  Without something you WILL get worse.  They are gaining more and more ways to predict who is likely to suffer that complication (Like are you infected by that virus or not?) and the complication, PML, strikes most often after two years of use.  So, there is a cushion of time when it is quite a bit safer.

I became more depressed on an interferon med and didn't really know it until I stopped it.  I was stunned at how much healthier I became mentally.

I'm not sure about the % reduction in relapses on Tysabri.  I believe it is quite a bit higher than 30% and maybe one of our members can look it up.  Gilenya - is newer and carries it's own risk of infections and such.

I would encourage you to keep in mind the almost certainty of deterioration without a med like Tysabri or Gilenya as you look at the potential side effects.  But, stopping the interferon seems to be mandatory at this point.

MS is not good, in general for our mental health,  and yes, we can have definite personality changes, in addition to depression.  I encourage you to take every step to try to reverse the mood and also the persistent thinking about the betrayal - hard to do, but the characteristic of survivors is learning the ability to move beyond our hurts and our losses.

Again, welcome,  this is a good place.

Quix, MD

[jensequitur]

I don't think I've seen you around before - if not, welcome to the forum!

Tsaybri may seem like a big change, but it hsa a proven track record.  Is your neuro wanting to switch you because of disease progression?  You might talk to him about Gilenya, which is an oral medication.  Unlike the injectables available, Gilenya has a 50% reduction in relapses.  I think that even Tysabri only has a 30% reduction.