Go Back   NeuroTalk Support Groups > Health Conditions M - Z > Multiple Sclerosis

Technically stable....but feeling like on a decline...

Reply
Thread Tools Display Modes
Unread 03-14-2013, 07:48 AM   #1
Lynn
Member
 
Lynn's Avatar
 
Join Date: Sep 2006
Location: Australia
Posts: 578
Default Technically stable....but feeling like on a decline...

Sooooo.....I had my usual 6 month MRI, and consultation this week - and it appears that everything is stable. Same collection of lesions in both brain and spine. No new evidence on scan - dozens of old players, but nothing new and active.

SO WHY DO I FEEL LIKE I AM GETTING WORSE???? Yes, we had an incredibly hot summer, and I was sick for most of it, but still, after nearly 12 years, I am starting to think I may be succumbing to the dreaded 'hypochondria'. I have tingling, numbness and mobility problems that I never had before - I am finding my mind more vague and easily overcome, my body less accommodating and my energy levels non-existent.

I feel like such a fraud. Getting ready to start Ampyra and see if that helps, but I just don't understand this - surely, if I am really getting worse, there would be concrete evidence????

Perhaps I am talking myself into it - who knows? Embarrassing at the Neuro's office though.
__________________
Lyn
.



Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993.
Lynn is offline   Reply With Quote
"Thanks for this!" says:
ANNagain (03-14-2013), Debbie D (03-14-2013), jprinz99 (03-20-2013), Judy2 (03-14-2013), SallyC (03-14-2013), tkrik (03-15-2013)
Unread 03-14-2013, 08:07 AM   #2
Blessings2You
Elder
Community Welcome Team
 
Blessings2You's Avatar
 
Join Date: Jan 2008
Location: Vermont
Posts: 6,680
My Mood:
Default

All of my "evidence" is the same, but I'm gradually getting worse. No "new" symptoms, but if I look back six months or a year, I can see how much better I was then. I think I'm probably Secondary Progressive, but my neurologist hasn't spoken those words.

The last time I had a true exacerbation was maybe five or six years ago. The same symptoms just wax and wane. When talking with my non-MS friends and family, I do sometimes call them "flare-ups" because people relate to that term, but they haven't been flares per se.

I don't think it's hypochondria. I do think we tend to be hyper-sensitive to whatever's going on in our bodies, though. Don't you?
__________________
*
*
*

**My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73:26)
Blessings2You is offline   Reply With Quote
"Thanks for this!" says:
ANNagain (03-14-2013), Debbie D (03-14-2013), Judy2 (03-14-2013), Lynn (03-14-2013), SallyC (03-14-2013)
Unread 03-14-2013, 10:41 AM   #3
Debbie D
Grand Magnate
 
Debbie D's Avatar
 
Join Date: Jan 2008
Location: Naperville IL
Posts: 4,815
Default

I agree with B2Y...we seem hyperaware of our bodies, because it is usually telling us a lot more than healthy people's bodies, don't you think?
I'm feeling the same as both of you...these little things creep in, yet the neuro doesn't seem bothered by it, because I am strong...leg reflexes are strong, etc. but the weird things that crop up, like my foot dragging more, a new tremor in my dominant hand, all of these things didn't seem to bother him. It's a matter of controlling the symptoms in my case, I guess.

Don't feel bad, Ann...we are the only ones who truly know what it feels like to be in our bodies. Just jot things down with dates, and get on with living, I guess. Docs can only do so much...and as much as I love my neuro, I think neuros are the whackiest bunch of docs around
__________________
Instant Karma's gonna get you-gonna knock you right in the head...John Lennon
Debbie D is offline   Reply With Quote
"Thanks for this!" says:
Judy2 (03-14-2013), Lynn (03-14-2013), SallyC (03-14-2013)
Unread 03-14-2013, 11:21 AM   #4
SallyC
Legendary
 
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 16,909
My Mood:
Default

I know what you're feeling Lyn.. Haven't been back
to my Neuro in 5 or so years, and I've been on LDN
for 10 years, but, I have progressed.

Not so much in MS symptoms, but in AGE!!!
Aging with MS is not pretty. So maybe your
progression is in age, making your MS feel worse?
You're still young, but age still creeps in somehow..
__________________
~Love, Sally
.







.



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With Quote
"Thanks for this!" says:
Judy2 (03-14-2013), Lynn (03-14-2013), tkrik (03-15-2013)
Unread 03-14-2013, 01:49 PM   #5
Jules A
Senior Member
 
Join Date: Jan 2008
Posts: 1,362
My Mood:
Default

It is my inderstanding that as we move on from RRMS to SPMS or for those with PPMS there are often not notable differences picked up on MRI.

It makes me sad that anyone with this miserable disease for 12 years would feel like they might be a hypochondriac. This is not your imagination.

While I get the value of having a positive attitude I really think that many times on these message boards it is cruel to those who are suffering from this chronic, progressive disease. "There but for the grace of God....."
__________________
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
Anonymous
Jules A is offline   Reply With Quote
"Thanks for this!" says:
Lynn (03-14-2013), SallyC (03-14-2013)
Unread 03-14-2013, 05:26 PM   #6
Aarcyn
Senior Member
 
Aarcyn's Avatar
 
Join Date: Jan 2008
Location: San Diego, CA
Posts: 1,699
Default

I can only add to what the others posters have said.

Nothing really new just a decline in the old sx's. The damaged nerves may be dying and that is what is leading to a decline.

CCSVI succeeded in eliminating a couple of sx's but the existing lesions are and will forever be diminishing my quality of life.

Good luck on trying a new drug. I hope it works for you.
Aarcyn is offline   Reply With Quote
"Thanks for this!" says:
Debbie D (03-15-2013), Jules A (03-14-2013), Lynn (03-14-2013)
Unread 03-14-2013, 07:00 PM   #7
Lynn
Member
 
Lynn's Avatar
 
Join Date: Sep 2006
Location: Australia
Posts: 578
Default

Thank you Thank you Thank you!

I think part of the reason I feel like this, is because all of my consultations play out the same way. I am on Tysabri (which has been good for me, and slowed things down), and I am JC+ so I have an MRI and a neuro appt every 6 months.

Each time, I hand over my films, he puts them up, goes through them screen by screen and points out all of the lesions that look the same, have not grown, and says he can't see any new ones, or evidence of new activity so I am stable, congratulations all is well.

That takes the wind completely out of my sails and anything I say from that point on feels baseless - like I am whiney and being difficult. He is nice, and does take time to listen, and make suggestions about medications etc so it is probably my own fear of being labelled a hypochondriac or a whinger.

Thanks again - I love this place, and all of you in it.

Lyn
__________________
Lyn
.



Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993.
Lynn is offline   Reply With Quote
"Thanks for this!" says:
Aarcyn (03-15-2013), ANNagain (03-26-2013), Blessings2You (03-15-2013), Debbie D (03-15-2013), Jules A (03-14-2013), Natalie8 (03-15-2013), SallyC (03-14-2013)
Unread 03-15-2013, 08:43 PM   #8
Debbie D
Grand Magnate
 
Debbie D's Avatar
 
Join Date: Jan 2008
Location: Naperville IL
Posts: 4,815
Default

Lynn I TOTALLY get what you're saying-we feel a "difference" in our bodies' ability to function; they look at films, test our reflexes, and throw a new med at us.
We feel like we are wasting the doc's time...yet we are afraid..we don't want them-or us-to miss something that might indicate that we are on a downward slope.
When I saw my neuro the other day, I thanked him for squeezing me in. He told me in no uncertain terms that if I have a concern, to call immediately. He said some people complain about working later hours. He to,d me,"I love it...because I HATE losing. And I don't want to lose you. So call..."
That made all of my embarrassment melt away. I feel blessed to have a doc like that...
__________________
Instant Karma's gonna get you-gonna knock you right in the head...John Lennon
Debbie D is offline   Reply With Quote
"Thanks for this!" says:
Lynn (03-15-2013), SallyC (03-15-2013)
Unread 03-16-2013, 08:37 AM   #9
Lynn
Member
 
Lynn's Avatar
 
Join Date: Sep 2006
Location: Australia
Posts: 578
Default

Sounds like your neuro is one helluva guy.
__________________
Lyn
.



Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993.
Lynn is offline   Reply With Quote
"Thanks for this!" says:
Debbie D (03-25-2013), SallyC (03-16-2013)
Unread 03-24-2013, 02:52 PM   #10
mojovandy
Junior Member
 
Join Date: Feb 2013
Location: Nashville TN
Posts: 8
Default

I thought psychiatrists were the whackiest, but am interested in hearing why neuros are.
mojovandy is offline   Reply With Quote
"Thanks for this!" says:
SallyC (03-24-2013)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Sex OK?d for Heart Patients If Illness is Stable NewsBot Health News Headlines 0 01-20-2012 04:30 PM
Feeling guilty. How would you cope with this terrible feeling !? BlueMajo Survivors of Suicide 7 08-12-2009 08:07 PM
I am Stable!! well, sorta Dejibo Multiple Sclerosis 8 01-27-2008 02:25 PM
Arizona sextuplets, mom all stable (AP) DocJohn Health News Headlines 0 06-13-2007 01:50 AM
Disgraced Pakistan Scientist Is Stable DocJohn Health News Headlines 0 10-28-2006 11:00 PM


All times are GMT -5. The time now is 12:42 PM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.


All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy
NeuroTalk Archives