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barbarann
Regular Member


Date Joined May 2008
Total Posts : 24
   Posted 5/25/2008 4:39 PM (GMT -7)   
Has anyone been diagnosed late in life.  I was diagnosed at 56 (no previous symptoms) four years ago and have not had any change in the numbess and stiffness to my legs - only getting worse.  I am on baclofen but does not seem to help.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 5/25/2008 5:40 PM (GMT -7)   

Hi Barbarann,

Welcome to the forum.  I am sorry to hear of your diagnosis and that things are getting worse.  That is indeed the nature of this unfortunately.  Are you not on a progression therapy?  I was diagnosed at 43 about two years ago.  I also had little warning before I was diagnosed.

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


barbarann
Regular Member


Date Joined May 2008
Total Posts : 24
   Posted 5/25/2008 7:31 PM (GMT -7)   
No, baclofen is the only thing prescribed.  I have been going to the MS Clinic for four years and they are not sure what to do with me since I am not the normal case.  I have had some minor symptoms that went a away but the numbess and stiffness in my legs have never gone away.

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 5/25/2008 7:36 PM (GMT -7)   
Hi, Barb, it's a frustrating disease for sure!
 
I've just finally been diagnosed but the symptoms have been around for over 12 yrs... they just didn't get bad enough to get anyone's attention until two years ago... finally dx'd in March (I'm52). Going for an LP next week or early the week after depending on docs schedule.. doc will make a decision on meds after the LP. At the moment, my symptoms are mostly below the waist (numbness, stiffness, balance, spasms, pain, plus vision, eyet tics , migraines, and GI tract issues just to name the basics) and they're mostly just a major nuisance.
 
The more I've learned, the more I realize I was missing a lot of symptoms prior to the major ones. This forum has been a really great place for me for information and lots of help with all my questions... I just keep asking... and adjusting. Welcome!
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Tapestryloom
Regular Member


Date Joined May 2008
Total Posts : 169
   Posted 5/25/2008 7:46 PM (GMT -7)   
Welcome Barbara
Carolyn
I am a mother to 4 children; James 7 mo.'s, Davey 2 yrs, Dana 4 yrs, and Anne 9 yrs.  I am currently studying to become a natural childbirth educator.... and just trying to figure out where my priorities are right now.


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 5/25/2008 8:15 PM (GMT -7)   

Hey Barbarann!

Welcome to the board! I'm so glad u've found us and decided to post! This is a great place...as i'm sure u'll soon see. The people here are wonderful and willing to try to answer u'r questions and help where they can. Please feel free to ask anything u'd like.

Wow...not on a progression therapy huh?? That seems way scary. U'r getting worse and not on any meds?? Does u'r doc give u a reason for not trying any of them? What is it that is diff about u'r situation that makes them feel u don't need to be on one? I'm sorry, lots of questions, but it just seems that fighting this in any way would be far better than sitting back and letting it roll. Numbness and stiffness in u'r legs is actually quite common with ms and given that u'r doc has u on bacflocan seems to indicate that he sees the need to treat the symptoms...so why then doesn't he want to treat the cause?? Best wishes to u on this friend...seems like such a roulette.

 


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/26/2008 3:51 AM (GMT -7)   

Rhonda, what is different about her situation is primarily her age -- pretty old to get a diagnosis of MS with no earlier episodes, and the fact that the only main symptom seems to be the stiffness and spasticity in her legs.  At age 56 there could be other causes for that which they're not finding...yet.

BarbaraAnn, I'm assuming they ruled out other things like cirulatory problems?  What got you to the MS clinic? I'm asking because the spasticity could have lots of other causes.

Baclofen isn't a cure for spasticity...and doesn't always work well for everyone.  Unfortunately there isn't a really good treatment that will make it go away entirely.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 5/26/2008 7:57 AM (GMT -7)   

Hi Barb!   My name is Barb also, and I was dx last year at the age of 50.  I also did not have much warning prior to an exacerberation/flare.  In retrospect, my only previous symptoms were a partially numb foot and fatigue.  My foot was that way (and still is) for several years and the doctors said it was probably caused by a pinched nerve.  I am only taking a low dose of baclofen in the evening right now, and I do not really notice that it has a noticeable effect on the stiffness in my left leg.  My other symptoms are pain/ siffness in left rib cage, occasional back pain, and burning/tingling pain in left forearm and on the top of my head.  Neurontin seems to lessen the burning/tingling pain.

I am not on amy of the progression therapies either although I tried 3 different ones and had bad reactions to all three. (Long story).  I have been to a ms clinic and they consider my ms to be relatively mild at this point.  I have another MRI at the end of this week and if it shows no active inflamation I will not try any new therapies for at least 6 months.

I am also surprised that your doctor/neuro has not put you on any of the DMD's. There are lots of people in their 50's and 60's who are on these treatments.

Barb


Barb/mystery reader
Diagnosed April 2007
Started betaseron --  May 2007 -- experienced allergic reactions after 2 weeks
Started copaxone -- June 2007 -- stopped after 4 1/2 months;experienced  severe 5 IPIR's
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 5/26/2008 5:58 PM (GMT -7)   
I am so amazed at how much I learn everytime I read thru everyone's posts! I guess I'm kinda in the same boat with barbarann as my neuro is going very slowly on the meds issue. I kinda see his point but then I didn't know some meds could help the numbness, the stiff/spasticity(other than flexeril/xanaflex?), etc... I just kinda thought these are "live with them things". I keep hearing about neurontin... guess I need to ask about it.
 
So many of these symptoms are just what I call nuisances... they can be debilitating at times but I've coped with them for so long that its only when they get really intense that I notice how bad they feel.
 
Is there some reference point for meds for various symptoms to discuss with the doc? I'm curious... I just haven't done enough research yet I guess.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/26/2008 6:17 PM (GMT -7)   
Doctors start taking medications seriously when patients "complain" -- report - -that they can no longer easily perform what doctors call "activities of daily living", or ADL's. That is, when it is challenging for you to: dress yourself, bathe yourself, feed yourself, toilet yourself, cook, do basic housecleaning, walk easily (at least 2 car lengths without support), do your paid job (if you have one), massive fatigue (you sleep 6-8 hours a night but still need to sleep during the day), have sleep disturbances (you DON't sleep 6-8 hours a day)..

A lot of sensory stuff -- numbness, tingling -- can't be found when the doctor examines you. YOU may experience it...but he (she) can't test for it, can't do anyhing to see just how severe it may be. So those sensory things are "self-reporting" -- if YOU complain loudly enough, if you talk about how they impair your ability to get about your normal day, then they're likely to try to find a medication that can help them. Not CURE them, not make them go away entirely...but make them at least manageable for you.

But doctors don't like to prescurbe A LOT of medications...and like to keep the serious stuff (like steroids) for the serious impairments (you can't walk anymore, or your bladder ceases to function) since most of the really serious meds also come with serious side effects.

A lot of what comes with MS is stuff we just "have to live with"..numbness and tingling are at the top of that list. But if it is REALLY challenging, then talk with your doctor about it. Neurotonin seems to help a lot of people, with severe sensory or nerve-related pain.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Steph57
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 5/26/2008 7:05 PM (GMT -7)   
:-)  
 
Hey y'all:
 
Pretty new to this web site, but thought I'd check the MS postings and weigh in on that. I am 51 and was got a tentative MS diagnosis about 6 or 7 years ago. about three years ago my previously mild and rare symptoms paid me a rude visit. The  subsequent MRI (compared the three previous MRIs) and a cursory office exam confirmed that I have Recurring-Remitting MS. After going over treatment options with my neurologist, we settled on daily self-injections of Copaxone. This medication, apparently is used to slow, or even halt!, the progression of the disease, but I still get symptoms. The injections are a piece of cake--I've suffered more from paper cuts! Finally, I have been in contact with a support group called Shared Solutions (1-800-887-8100) staffed by nurses specializing in all things MS. Check it out, and best of luck.
Steph57
 


barbarann
Regular Member


Date Joined May 2008
Total Posts : 24
   Posted 5/27/2008 9:01 PM (GMT -7)   
Thank you everyone for the info.  I will be going to the MS Clinic in two weeks and will talk to my Doctor about medications.  It seems that most ms people have had some previous signs before the first episode.  In my case there was nothing - just numbness in my legs.  I have also had the numbness in my rib cage and the electric shocks up the back of my head but all of these have gone away in about a month.  I was put on steroids a couple of years ago but that only made be sick and the symptons were still there.  I am still working full time but need a walker to get around - balance is not very good.  The one thing that I am thankful for is that I do not have to worry about paying for any medications, tests, etc. (in Canada) even the walker was paid for by the health care - that relieves some stress.   I have just recently gone through breast cancer as well - as if I didn't have enough problems.  Thanks again for all info. 
 

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 5/27/2008 9:15 PM (GMT -7)   
Uppity, great post for reference, thanks! I always thought my neuro was "weird" cos he likes to ask a question and listen... and I like for him to just exam and tell me... but he always asks something first and then he'll do the neuro checks and make me walk (I flunk) and do it over and over again and he documents it all. In the beginning when it was 'inconclusive" every visit... I kept imagining him typing "hypochondriac!" ... my bad attitude was rising from my discouragement knowing something was wrong but unable to explain it right. But instead it turns out, he's listening the whole time and comes up with conclusions... :)
 
I appreciate how he is going conservative on the meds too... save the big guns for the big stuff cos it'll be around soon enough. I have a fairly good med regimen already to deal with all the little stuff between him and my GP and to keep anything from becoming habitual I try not to use it all the time. So far so good. If the LP produces enough concern, he's already suggested Copaxone.
 
Most of my symptoms have been around so long and poopoo'd away for so long that now that I learn more about MS heck I've been living thru them forever already! The numbness, tingling... yep, top of the list but not unbearable... those little electric shocks... they've happened dozens of times at the weirdest times but heck if I knew they were a "sign" of something... I had a car accident in '92 and neck/back damage... figured I pinched a nerve the wrong way... it just happens...now I know what it was.
 
That's what I love about these forums and sharing information... it so helps to hear everyone else's experiences because along the way it validates our own so we know we're not imagining it.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


gammer
New Member


Date Joined May 2008
Total Posts : 1
   Posted 5/30/2008 1:11 AM (GMT -7)   

Hi,

I was diagnosed (finally) at age 57, although I had symptoms for the last 20 years but never worsened until just 3- 4 years ago. I'm now 60 and require a cane for assistance in walking.

 

Over the years of seeing many doctors, they indicated a possiblity of MS to it was all in my head. Don't feel to upset of what you feel the doctor is thinking about you. No one has exactly the same symptoms with MS.

I'm currently taking Betaseron after 2 years on Copaxone.

 

Good luck to you and keep a positive attitude. Get lots of rest and try Yoga or at least try to stay relatively active.

 

Regards,

Gary


Steph57
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 5/30/2008 9:11 AM (GMT -7)   
Hey y'all

RE; MDs who talk more than they listen, don't ask questions when the patient brings up concerns about a symptom (i.e.: "My blood pressure, which is usually normal, has been sky-high for a couple of weeks. I'm worried." Doc's response "Oh, it's probably nothing." That kind of thing.) I would suggest searching for another doctor. Any doc who doesn't take thepatient seriously should be regarded with scepticism. They're not gods, though some possess such a self-delusion.
If any of you are from the Boston area I can pass along the name of my neurologist, who is terrific, and knew from a (what seemed to me to be a rather cursory) office exam that the MRI would show the MS progression. Yup, it did, but she didn't let on until the MRI provided incontrovertible evidence.
Steph57
 


barbarann
Regular Member


Date Joined May 2008
Total Posts : 24
   Posted 6/14/2008 3:09 PM (GMT -7)   
I went to MS Clinic last week.  The doctor is now questioning whether I have MS or not and has booked me for another MRI.  When I walk my legs get stiffer and more numb to the point that I cannot hardly move.  It feels like my legs are wrapped in cement and my feet are wrapped in foam. She thinks that most MS patients feel better after they walk because the stiffness lessens.  All the previous MRI's have shown very small lesions and the last one (about 6 months ago) did not show any change.  Could this be something else?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/14/2008 3:39 PM (GMT -7)   

barbarann,

I am sorry to hear that you are back in limbo.  I hope you get some answers real soon.  It seems as your doctor is saying this could be something else.  This makes sense as you were never treated for MS.  I think I recall you never having taken an MS progression therapy.  But, it could be that the doctor finds that your symptoms are caused by something else that is perhaps more treatable than MS.  That is my sincere hope for you.  I know you are suffering I am hoping this doc can at least successfully treat your symptoms so you are feeling better soon.  Please keep us posted as to the results of your MRI.  Let us know what the doc says.  Good luck and hang in there.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 6/14/2008 4:24 PM (GMT -7)   
Barbann, what your doc is saying about the stiffness is true for me... with my legs the stiffness is like the legs aren't getting the message when I think I want to move, but once I'm up and have begun moving, they finally catch up and the stiffness lessens. It's hard to explain. I feel like I'm frankenstein walking at first or off balance, going to teeter totter... but once I'm moving... then they're listening... it's a message issue. The Nerve conduction Test I had confirmed my nerves to my legs were much smaller than they should be for a woman my age and size, and the messages were delayed... thus the delayed response time.
 
The perpetual stiffness/heavy legged feeling can also be many other situations like peripheal neuropathy, which my neuro hoped I'd had cos that's very treatable and often healable. Diabetes can cause these problems too. Many many other issues can cause the stiffness. You gotta let the doc work thru the steps...
 
The key to MS is the "index". Let the doc put the puzzle together... one or two don't make the disease. And please try to avoid reading all the symptoms of MS, it's too easy to plant the stuff in your subconcious and drive your stress levels up worst. Be good to you and patiently wait the docs methods out. As a friend of mine told me, don't wish yourself that slippery slope.
 
Hoping the best, would love to hear you've got something she can take care of pronto. :-)
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


barbarann
Regular Member


Date Joined May 2008
Total Posts : 24
   Posted 6/18/2008 7:02 PM (GMT -7)   
Does anyone have swelling in their feet with MS.  My feet get swollen when walking or sitting for long periods. 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 6/18/2008 7:44 PM (GMT -7)   

Hey Barb,

  I do not get any swelling of my feet.  Usually swelling of the feet or ankles is associated with circulation disorders.  In women, it can be a sign of heart disease.  I would definitely tell your doctor.  Swelling is usually caused by a condition called "pitting edema" and it is typically not a good thing.  It can happen once in a while when you stand for a long time, or during heat spells or if you have ingested a lot of salty foods.  Usually this is short lived however and will resolve itself in a day or two.  If this is lasting longer or if it happens frequently, it can be a sign of a more serious problem. This is my understanding of swollen feet but I am not a doctor.  If I were you, I would let your doc know.



Gretchen       co-moderator MS board       diagnosed with MS July 2006

Post Edited (Gretchen1) : 6/19/2008 9:46:14 AM (GMT-6)


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 6/19/2008 4:44 AM (GMT -7)   
Barb, no I never get swelling but my sister who is diabetic and has circulation issues because of that does horrendously.  She also has uric acid issues, that may be something you want to look into. These high protein only diets can cause that imbalance in our bodies (me included) and uric acid bring on gout which brings on the swelling too... but no I don't have any of the swellling in the feet stuff to worry about... Gretchen's on the right track with the pitting edema as that's what my sis fights a lot.

Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


barbarann
Regular Member


Date Joined May 2008
Total Posts : 24
   Posted 6/20/2008 3:52 PM (GMT -7)   
I have had my blood checked several times in the last 6 months (due to breast cancer) and the results came back with no indication of diabetes. I have also had my heart checked for the surgery and everything was ok. The swelling happens every day and will only go away if I sit with my feet up for about 20 minutes. Since I am sitting at my desk most of the day, the swelling usually starts in the morning. It also gets worse when I walk even short distances. I can hardly move once it sets in. Although the numbness is the only symptom that has never gone away, I have still had the electric shock sensation up the back of my head. That lasted for about a month. I also get numbness in my back and part of my torso but that seems to go away after about a month. I would like to think that it is not MS but no one knows for sure.

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 6/20/2008 8:48 PM (GMT -7)   
And that's the problem with getting the dx... I got so depressed and felt I was "wasting:" my time going to the neuro so I was going to just quit... then he followed up and that impressed me, so I went with an attitude... and more symptoms, new stuff and he kept testing... finally when the ON was in a full blown flare he could actually see it clinched the dx. But it is a long harrowing road to be on.. I know the whole "discounted" feeling all too well, everyone looking at you like your nuts... hypochondriac... etc. And most MS neuros who specialize in it know this and paitently continue to explore and followup.
 
I hope you don't give up nor do your docs miss anything.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


barbarann
Regular Member


Date Joined May 2008
Total Posts : 24
   Posted 12/7/2008 4:56 PM (GMT -7)   
After my last visit to MS Clinic, I realized that the neuros have been telling me all along that I had Transverse Myelitis.  I always thought it was a symptom of MS and did not question it - not realizing it is a different nerological disorder.  My last MRI showed some new lesions on my spine.  Everything started to make sense once I did a little research on this.  I am still puzzled about whether it will eventually turn into MS.  Right now I do not have any other symptoms except for the numbness and stiffness in my legs.  Has any one had TM that turned into MS.

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 12/10/2008 3:55 PM (GMT -7)   

Hi there and lots of posts......one that stuck in my mind was the one by D'Awesome - where you said that you were dx in March and you will be going to see your doctor here right away to determine what DMT (treatment) u should be on.... I really disagree with this - gees your dx was almost 9 months ago.......it has been established that once you recieve your dx, the faster that you can get on a DMT the better off you will be....this person has almost waisted a year for u, and I would not let this go on any longer.  Just my two cents worth..

And yes Gretchen, I have not been here for awhile, but Im bacccckkkkkkkk!!! Did you miss me ????? Don't answer that....

Anyhow, have a great day, even and talk at you all later

Gary

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