MS personality changes?

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Veteran Member

Date Joined Oct 2007
Total Posts : 748
   Posted 11/16/2008 1:47 AM (GMT -6)   
I wrote awhile back seeking info on this disease because my brother was diagnosed with MS, and also he tested very high for lyme disease, His primary physician declared MS this was a few years back I can not remember exactly how long. Well now he is really acting different, argumentative, highly sensitive, confused, almost childlike in his speech i..e. he stretches words out and uses a different high pitch voice, almost as my other brother crudely put acting like a "ret---." He is having trouble sleeping and has for a very long time now experienced very vivid constant dreaming when he sleeps. HELP?  Everytime I look up this disease I get nowhere because the literature always says highly variable and because I used to know a girl with ms who said she did not have pain I assumed his pain eliminated the diagnosis of MS and instead indicated lyme. Now i am not so sure he is so turned off by doctors (I do understand this I too have been chronically ill and have pretty much given up with the exception of pain killers and a beta blocker drug) I am not sure if i can get him to one and if I can what kind of a doctor should I push for?  Thank you for any direction you can send me, I am really blessed that on a prayer chain I "found" MS associated with personality changes so here I am again.  I know late chronic lyme can lead to MS symptoms so heavenly days I am so confused. He has difficulty finding the right word (as I do also) he forgets everything (which I do also) but the recent increase and obviousness of his personality change makes me wonder is this how ms progresses, I know he has trouble getting up and walking its an effort but he does it .

Veteran Member

Date Joined Mar 2006
Total Posts : 2146
   Posted 11/16/2008 11:17 AM (GMT -6)   
Hey Roses

I've not known of any personality changes as u describe here with MS. Have u also posted this on the Lyme board?? Pain IS a part of ms, but that's to be expected with a disease that affects your nervous system. However, lyme affects the nervous system too, so u can't eliminate either on that basis. Of course with chronic illness, esp associated with pain, u will get SOME personality changes...but they are more to the affect of either acceptance of what is happening with u'r life and body and of course the pain. If u haven't posted this on the lyme board, please do. If we have any lyme board members reading this, please respond as u see is needed. If i were going to try to lead u in any direction, i'd say get to an ms specialist AND to an LLMD. Find out what they both tell u and proceed from there. This does, to me, seem more likely lyme related, but i'm no doctor.
Co-Moderator, MS Forum
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
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Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 11/16/2008 12:46 PM (GMT -6)   

Hi Roses,

I remember you posting here before.  You have a tragic story here.  I am afraid that of course we cannot help you with a diagnosis.  It seems that he has received both lyme and MS as a diagnosis?  I do know that MS causes pain and for some, that pain is severe.  I know that MS causes word retrieval problems and depression.  I am not sure I have heard of anyone having the problems your brother is having; the extreme cognition issues, the changed speech patterns (beyond just your basic word formation).  Certainly there IS a ton of variation person to person in both MS and chronic lyme.  I suppose that "argumentative" can come from depression and anxiety.  If I were you, I would continue to press both neuroligists for MS and a LLMD for treatment.  See what each says and what they offer as treatment. 

You are correct; MS and neuro/chronic lyme are very difficult to distinguish.

Is your brother on a progression therapy for MS?  If he does in fact have MS, it appears to be progressing rapidly.  You may also want to press for a neuro-psych testing. This can test for specific areas of cognitive functioning.  Good luck! 

Gretchen       co-moderator MS board       diagnosed with MS July 2006
I have no lesions on my soul and so I will live with no limits.

Regular Member

Date Joined Aug 2008
Total Posts : 271
   Posted 11/22/2008 12:02 AM (GMT -6)   
Yes , I do recognise all of the following as being part of MS - loss of word retrival, memory loss, increased irritability, emotions very close to surface (in my case quick to tears, but I have also heard of anger), severe pain. I would also say I have little faith in drs & can understand his attitude & yours too. Persevere as long as you have the time, energy, strength and money and I hope you find a knowledgeable one. Love & light

New Member

Date Joined Nov 2008
Total Posts : 2
   Posted 11/24/2008 1:21 AM (GMT -6)   
hey rose ive had ms for 15 years now and the personality changes are very difficult to deal with. i know it costed me 20 year mariage. because quite simply i wasnt the person i used to be. tag that along with being a man how could do it all in the eyes of my children, and someone who couldnt talk to his wife about things (embarassing ones)) to sombody else. look just remember hes going to change and if you dont try to understand him he could go off and seclude him self and forget the outside world. and by your question you care enough to inquire hes very lucky. pain constant can make even the toughest man weak. im actually one of the rare people that can force myself on and off pain killers at will. though i broke my back and neck so the pain is for different reasons. as for lyme disease the tests are inconclusive 90% of the time they run a pannel but the tests are flawed they need to be typed and that takes along time most dr.s wont spend that much time unless you tell them too (and expensive). i also have had problems sleeping which over a long period of time can lead to pyschotic episodes at worst but hostile at best. i now take a pill coctail at night and sleep for 10 to 12 hours with out waking up. remember when a part of the brain is effected the other parts may become more active. i have problems with short term memory and loss of words but the cool thing is i can now watch jepordy and know stuff i didnt know i knew. your a good person so comunicate with him but being a sister stear clear of the embarassing aspects of ms, unless he brings it up. and dont push. know when to not say anything. kinda hard to do but youll learn his patterns.

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 11/24/2008 9:22 AM (GMT -6)   


Hi again. I posted to your other response.  You have a lot of experience and I am so glad you posted.  I am truly sorry for all you have been through.  It is not men alone that have trouble communicating that their bodies are failing them.  I hope you are managing your symptoms and finding joy in life.  I appreciate your candor and your willingness to share.  Your support on this post is wonderful.  Thanks.  And again, welcome to HealingWell.

Gretchen       co-moderator MS board       diagnosed with MS July 2006
I have no lesions on my soul and so I will live with no limits.

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