dumb relapse question...:)

[meg321]

This  a is probably a dumb question but after three years with MS, I am still not sure what exactly a relapse is.  I am sure someone can help me here.

and I am the one who says "there are no dumb questions!"

thanks, meg

[meg321]

Well, he could be, thats a good thought.  Not sure what I would or could do about that.  He denies a lot of things or gets angry if I ask.....I really don't understand him at all..lol

I know that my MS Specialist was great in the beginning but that soon stopped and she seems to not really care that much. I bet I have not seen her for over a year now...in fact it seems that they try to get rid of people more that help them.  I was given a PA for awhile and she was very helpful but she was taken away from me and now I have a LVN that doesn't even answer my emails.

I think teaching hospital's, in my case UCSF, are only there for themselves, you either are a good subject or you are not.

This is one more thing I do not understand and there are no neuro's close to me that I could see.  A nurse from my insurance co. is trying to help me find a neuro closer to me, we now drive 3 hrs to SF, she doesn't know yet I don't think but the list came to me and it is blank.  I just had to laugh....

hugs, meg

[PastorDan]

Passing thought: could hubby be suffering from depression?  Might wanna just give that a thought or two.  Depression can often show up as a reluctance to do things until they are absolutely positively necessary.

I very much understand the concern over decreasing brain function.  I was largely encouraged by my neuropsych analysis (Summer 2009, IIRC), but it felt like the other neuros, especially the so-called MS specialists, paid no attention to those reports, which said I had deficits consistent with demyelinating disease processes.

Well, we will pray that your week ahead brings some solutions and relief.

[meg321]

Hi, this is such great help....a lot of it I already do.  In the house I am really good about keeping things in the same places and I always put things away.

Some of these things are "firsts" for me and I make errors that are way out there and I have never made them before.  Today I ordered a wedding gift for friends, it was for a trip to Hawaii, not the whole trip but $50.00 towards it.   I charged it to PayPal.  

I didn't notice but I paid it to a "garbage can" company of some sort.  I only knew because I got a note back. Now I have to figure out how to get my refund back.I had already called two friends to figure out how to do it and I still messed it up.

I do tell my husband things, he does the best he can,  his "best" is frustrating  LOL  My bills may become a problem at some point, although I have most of them set up automatically from my Credit Union online.But there are the ones that are complicated.

Its what I do, I was a bookkeeper and had to retire from it, my husband took over and it drove me crazy....I am sure between him and my boss it is a real mess.  I finally had to let it go..

But to turn over my bills and payments to him would not be easy, I can't do it, won't do it, it wouldn't work.  Plus its what I do at home, its almost all I do.  Enough of that..not yet !  Gotta go to sleep but you and PD have given me ideas to work on..

hugs, meg

[Antalya]

Oh dear, oh dear!  I know the  brain drain feeling.  PDad had a great idea.  It's what Kessler Institute told me during rehab.  The problem with a couple drs is that they won't allow me to tape!  (THAT made/makes me mad.)  If you have an iPhone they will help you figure out how to use various features.  Just make an appt w/ the "Genius Bar".  If not an iPhone, I don't know about other phones, but I assume others would too.  Or ask friends.  And write down what they say.  And always use the same little notebook - or calendar - so you keep your notes in the same place.  
It really does help to try to keep all your "stuff" in consistent places.  Batteries always..... keys aways...... bills always..... (altho I have to pay them as soon as they come in or I forget!)....everything in your purse always in the same location (maybe all in separate pouches/containers?)
Have you specifically told your hubby what you would like him to help you with?  He might just not have a clue!  
We're pulling for you!  Do you have any good MS support groups to go to, depend on?  
Good luck!  I just call it my swiss cheese for brains!

[meg321]

Now, PD, that got me excited !!  Its a good idea, I actually bought one to take to my Drs. office to tape my visits but never learned to use it and the last time I was going to try it, the batteries were dead.  And for some reason my husband does nothing unless I ask him directly and when I do he puts it aside and does it when he feels like it.  He is a bit useless in that dept. ...he is mostly good at taking me to my Dr. appts...or if he "feels like it"...LOL  It is frustrating.

Maybe on my computer or smartphone although I cannot use it very well.  I used to be the 'techie" in the family until my brain started dying.  But those are some good ideas..I will look into it.

I always loved high tech stuff so i am not liking my brain much nowadays, I still buy things and then i cannot use them, makes me nuts !!  I will get back to you on that.

hugs, megster

[PastorDan]

Good to see you again, megster.  Was wondering.

See if you can find a digital voice recorder to keep wit you.  I think many computers and smartphones have them built in nowadays, but i'm thinking small and simple.  Anyway, when you think of something you want to say or share (with us, neuro, family, etc.), just hit Record & talk your heart out.  Then find some speech-to-text software, or just listen to your recordings when you can take a.few notes before going to your appointments.

[meg321]

Sorry, I was off for a few days, oh wow, a lot of days now that I looked at the date.

This was good for me too...Ren & Laurie, you both sound like me.  My Dr wants me to go go a therapist and she gave me a list.  I am in a small area so it is a small list..lol  I need a daily therapist I think...for instance today someone said something to me, it was regarding a visit I was going to make and to go into the whole thing would be a lot of writing but from what they said it made me want to change my plans, which then made me sad and unhappy and now I just end up crying.  I like to keep things simple and so far, 3 people have made it more complicated for me.  I honestly would just rather stay home...the part that makes me unhappy...I am not sure what makes me unhappy.   Its just so much trouble writing down what is bothering me just to wait for a Dr or therapist so that I can read it to them....
I am so confused right now that I can't finish this.....normally when this happens I just delete everything and wait til I can share better.  This time I will leave it here and come back later...my mind is just such a mess.

meg

[rendean]

I ,too, can relate to you and Laurie (welcome Laurie-since wwe haven't met).  I feel bad a good bit of the time especially since my last relapase which was a whopper with 7 days in ICU.

I came home Nov. 1st and still do not feel like my old self. TOO tired, too much pain, too much trouble sleeping ,mostly to pain, which only heightens the "I feel like crap" syndrome.

I haven't been driving for a while and when I do get a ride, a trip to the grocery store is a big event, leaving me paying the price the next day with increased fatigue.

As for your heart and lungs, those could be contributing factors, especially the fatigue from those on top of MS fatigue.

There is a Health Page on Relapses:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Relapses--Pseudo-Relapses-and-Remissions/show/372?cid=36

Quix , at one time , said that worsening depression is a sign of a relapse. I searched the archives BRIEFLY , and didn't find it. I did find an old thread that discusses depression and MS and Alex has a good response:

http://www.medhelp.org/posts/Multiple-Sclerosis/depression/show/1533848

I know this isn't a very detailed answer but it's late and I'm again too tired to continue. Had to proofread twice due to too many typos. I need to get on here earlier in the day but this month have had doc appt or PT every day this month except one. Even have PT on New Year's Eve which I hope will kick off a better, healthier new year and I wish the same for you and the rest of  the forum!!

Ask more questions Meg!!! We'll get them answered!

Best,
Ren

[rendean]

EXCELLENT POINT PD!!

[grandmalaurie59]

Hi Meg, I am sorry that you are feeling so bad...I unfortunately can relate. I feel like crap most of the time lately too! I had about 2 weeks where I felt pretty good...I overdid it and I am still paying for it.

I too have other health problems which only compounds the MS diagnosis. I just was told by a Neuro-Psych doc my test results showed I am mildly depressed and anxious due to my health problems and life situation I am currently going through (no job, no money ect) she wants me to get counceling from a Health Psychologist to deal with things instead of "stuffing" and trying to deminish my feelings and problems.

I think my biggest problem is I feel like I have to be the "strong one" for everyone else. I don't have time to deal with me...and my deepest needs...to much pain and work. My Neuro-Psych feels by getting counceling and learn helpful ways/tools to deal with my "stuffed" feelings, I will feel better mentally and physically. I DO have real health problems that won't go away.....but she promises me I will feel better overall.

I don't know what your situation is, but just thought I would throw that out there....I am sure there are a lot more people out there who are like me! Stubborn, Pridefull, and hardheaded! ;)

I too don't really understand how to tell the difference in relapse and everyday crapiness! I don't "feel" depressed or unhappy (thank God). I already take Effexor....do you take an antidepressant? They do help a lot with feelings of depression/unhappiness. They also help you feel better too...but not for me right now.

I thought I was having a relapse when my fatigue and cog-fog began to worsen....along with feelings of weakness increased tingling, pain, muscle spasms ect....Am I having a relapse? Who knows? Probably not I imagine...I am new to this all too....maybe someday I will be able to tell the difference too.

I hope you will feel better soon!! Have a Merry Christmas!

Hugs,

Laurie  :)

[meg321]

Ren, I would like more info but I am not exactly sure what that is. Its just that I am always sick..I just feel like crap all of the time, shortness of breath, headaches, other pains, all the cog stuff is worse and the depression..just all the same stuff but worse.  I can't even explain it, I feel like I am crazy.  

I just never feel good and it could be a combo of my heart and lungs. My cardio says my heart is doing fine,can't find a good pulmonoligist, but from what mine says my lungs are not alll that bad.  They keep pointing me back to the MS.

I know that I am not the only one, but I would love to have a life, which means going to Safeway again or even driving the 20 min to get there.  And being a bit happy would help.

I am just looking for answers or am I asking too much, do we all feel this way?  I may be just venting...

thanks, meg

[PastorDan]

And there ARE no dumb questions -- EXCEPT the one you should have asked but were afraid to ask.  No need ever to be afraid of this community; whatever it is, some of us have probably been there!

[PastorDan]

Yeah,what Ren said.  Relapse means that whatever it was that was troubling you and went away has now come back, uninvited.  (In evangelical circles, we call it backsliding! ;-D )

[rendean]

Dear Meg,
No dumb question! A relapse is whe your body shows signs/symptoms of MS. some relapses involve old symptoms and some like my last, involve  new symptoms or old and new symptoms. remittance is when the symptoms wane and you start to feel better.

The remittance does not always mean you will be back to square one as the relapse MAY have caused new permanent damage depending where the new lesion(s) were.

Not a complete explanation but I can expand on it tomorrow if you'd like more info. Just let me know. Too tired to think it through anymore right now.

Ren

[meg321]

I knew that was a dumb question...):