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611606 tn?1315517767

Chronic Progressive MS

I am wondering if there is any one at this site that has Chronic Progressive MS. I have had MS for the past 23 or more years. When I first found out this was what I had I was in a state of shock, and had no idea how it was going to change my life. I joined a peer group, but no one there and it was a large group seemed to have the same problems I was having. I quickly learned no two people have the same problems.. I don't know any one with CPMS, except me. But I know there are a lot of us out there.
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198419 tn?1360242356
Welcome! Thank you so much for joining!

We do have one member who's user's name is 'monotrome' and his name is Craig. His wife "Elaine" is the one who posts.  She and Craig have been all over the map to get a Dx. I'll hit her up w/a note so she can see you here as Craig finally, thank the good Lord, was diagnosed just recently.

My journey to diagnosis was short.  I basically thought the Drs were wrong and that I had a stroke.  But I now know differently.  It's so true w/no two people have the same exact problems.  Those of us w/it understand, but the general public (and some Drs) does not understand this and thats a problem I'm sure you are all too familiar with too.

I'm so happy you are here to lend your knowledge, your experience, and support.  Once I joined here, I never left.  Our family consists of those who are not diagnosed, those who are, those who should be, etc. What's nice is we have such a variety of talents, knowledge and compassion.  Lots of us say that someone blessed this forum early on and I know that has to be the case.  

Thank you again for coming along, and look forward to getting to know you better. Please share your journey when you feel comfortable to do so.  We'd love to here how you've been after all these yrs of living w/MS.

(((welcome hugs)))
-Shell
Helpful - 0
611606 tn?1315517767
You are so kind. It didn't take but one month of test for them to discover the MS. The MRI was the last test(1/29/86).. Three major lesions and too many minor ones to count. I was ill with the "flu" for 2 1/2 years before I found a Dr. That realized something was wrong and it wasn't the "Flu"...
This is quite the journy we are on... I will share my journy with you, which is some thing I haven't done before this past month. The first site I tried, I was the only one there that had MS.. Laura saw my page and told me about this site... I can't thank her enough.. I don't feel like I am still alone any more... What a Blessing all of you are to me.. I have been very lonely this past year... It is getting harder... But now my Spirits are lifted... Thank you God for all your many gifts...
Helpful - 0
572651 tn?1530999357
I can't imagine getting a diagnosis these days with only one MRI - the hoops we have to jump through now are amazing.  But then again, so are the disease modifying drugs amazing that are available now that weren't around in 1986.  

May we ask what kind of treatment your doctors haveyou on now?  Sorry if that is too personal.

My best,
Laura
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429700 tn?1308007823
I want to welcome you, too.  I'm so glad you found this forum and am looking forward to getting to know you.  Shelly is right about the people on this forum.  People here do have many talents--not just the experience, intelligence, etc.  but God-given gifts of the heart.  I can't think of a more caring and supportive group.  

I was just diagnosed with RRMS in early February, but have been sick for a very long time (I think in the mid 90's).  I never was referred to a neurologist and thought that my problems were rheumatological.  It wasn't until my younger sister was diagnosed with MS in the later part of 2006 and insisted I see a neurologist, that I even considered my problems were neurological.  Once I did, the puzzle pieces started coming together pretty quickly.  I did go through one incompetent neuro in the process who didn't even want to do an MRI, but I found someone just a couple of months later who took me seriously (my sister's doctor).  

My sister has been told that she may be converting to secondary progressive MS (she's on Tysabri).  I sometimes wonder sometimes if that's what's going on with me, too.  Some symptoms definitely go away, but others remain.  However, my sister isn't able to walk (drop foot)--which is a huge difference.  I walk, but with lots of pain in my feet.

I don't want to continue rambling on about myself, so I'm going to cut it off right here!  I'm looking forward to hearing from you.  :)  Deb

Deb
Helpful - 0
Avatar universal
Hi and welcome to the forum!!!   My husband has just recently been diagnosed with PPMS.  I would love to hear your story when you have time to tell us.

Hope you stay with us!!

Elaine
Helpful - 0
611606 tn?1315517767
Thank you so much, You have no idea how finding your messages warm my heart. It's been rather lonely these past years, I knew I wasn't the only one out there, but was so scared that if I tried to reach out, people wouldn't understand that I wasn't complaining just needing some support from some one who understood where I was coming from...
As you get to know me you'll learn that my Faith is how I get through the darkest days.
I can't help but feel that God lead me to finding Laura on a site where no one else had MS, she lead me to this site and to all of you...
I promise I am not going anywhere else... there is no need. I now that I am not alone anymore... may God Bless each and every one of you...
Hugs on the winds from me to each of you...DJ
Helpful - 0
611606 tn?1315517767
Laura, right now we have ran out of treatments, in the beginning we tried almost every new drug when it hit the markets, but none of them worked or if they did it didn't last. I am so glad that today they have more new drugs to give to the newly diagnosed. So long story short, my Doctors are doing what they can to keep me as comfortable as possible, but as I said earlier there isn't a treatment at this time for the internal pain in the colon, bladder and other organs.  I spend a lot of time on my computer playing cards to get my mind off of my body... They( The Doctors) know that after all these years I am so very tired, it's difficult for my family because there isn't anything they can do, except love & support me. I know it is much harder on them than it is for me..
Hugs on the Winds(HOTW)...DJ
  
Helpful - 0
600901 tn?1221971745
When I was diagnosed in 1992, they used the term "Chronic Progressive". It is my understanding that they just don't use that terminology any more. The designation doesn't mean that you have different symptoms, just that you are progressing, and are probably secondary progressive. I hope this helps you to feel less alone out there! :)  Hugs,
mrsmel
Helpful - 0
611606 tn?1315517767
Thanks, I am so happy I was lead to this site by Laura, my goodness for the first time I feel like I have a support group. 23 years is a long time to feel alone(when it comes to living with MS). My family is very supporting, especially my one daughter. She & her husband are "My Rock". She has walked every mile of this journey at my side. How she does it, I don't know.. she has five children 17 to 4years, she home schools all of them, plus takes care of my shoping etc.. Talk about a Blessing.She was so surprised when I told her yesterday about joining your group. She knows I tend to keep to myself.. and not talk to people about MS... I can't stand their looks of "pity"...
I don't consider my self "disabled" I have just had to learn to do thing a new way..
Have a love filled day...HOTW..DJ
Helpful - 0
572651 tn?1530999357
Your presence here can add so much to all of our knowledge and compassion about MS. The fact that you have been on this journey for so long makes you an authority (sounds better than elder, right? LOL) and I certainly think your voice can tell us so much about what lies ahead in our own futures.  

I am looking forward to reading more about your life experiences.

Be well,
Laura
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Avatar universal
Hi.  We homeschool our six children too!   Tell your daughter "hooray for the California homeschoolers in fighting the court decision and having it reversed"!!!!

Glad you are here!

Elaine
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Avatar universal
I am so glad you are here!!  You sound like a truly amazing person, and I can't wait to get to know you.  You will love it here, it is the greatest place in the universe.

I also homeschooled my children and it was the most rewarding thing I have ever done.  

Looking forward to hearing more from you.

Hugs
doni
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608526 tn?1300956781
Hi there,

I haven't been diagnosed yet (it's been 7 yrs) and was feeling quite alone myself.  I found this site and already feel much better!

I look forward to being friends.

Zeta

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611606 tn?1315517767
See, now you know you aren't alone. I know there are a lot of people who haven't been diagnose, All that means is the Dr. haven't been smart enough to discover what is going on with you... All a diagnoses is is a name, they are surely treating you as things show up. I will keep you iny Prayers... Hang in there, you aren't alone Now.
Hus & Prayers...DJ
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147426 tn?1317265632
Well, yes you have come to a wonderful place.  We have a couple people here in their 60's.  Neither are posting much right now, but if they drop by, I'll have them say hi.  Many of us though are in our 50's.  There's a whole wartload of us.  

I am Quix, a retired/disabled pediatrician diagnosed with RRMS just a little over a year ago.  Most of my most severe symptoms showed up and have never improved, the leg weakness, the spasticity, the incontinence.  But, other symptoms do resolve over time, so I am going along with Relapsing Remitting right now.  

It isn't clear to me either whether you have Primary Progressive or Secondary Progressive.  That would depend on whether you ever had episodes of symptoms that came, stuck around for a while and then improved or went away.

In any case, you are most welcome here.  We talk about absolutely everything and the forum is big enough to have a lot of experiences to share.  But, it has always kept its intimacy and compassion.  These people are truly wonderful!  I can often answer medical questions, though I was not a neurologist, but I do try to understand what is going on.  We have areas to read more information called the Health Pages.  These can be found in the upper right hand corner.  Also on your profile are several different areas.  You can share photos or write your thoughts in a journal.  The journal can be set to be public (in which case it will be available to anyone on the internet), be private, like your own private diary, or available just to your friends.

We also have a couple ways of communicating with others.  You can send little "notes" which are like "post-its" and are public on your profile.  You can also communicate privately via "messages" which is like an internal email system.  These messages are readable and seen only by the two people they are between.

Read all you want.  Jump in and share whatever you like with anyone that's posting.  I'm so sorry you have had so many years alone with this disease.  I hope we can change that.

Quix
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611606 tn?1315517767
I think that in 1971-1973 I had an attack, and again in 1982, but my Doctors discounted them because I wasn't given any diagnoses, I told them that in both cases my white blood count was very high with no signs of an infection. Back than I was told I was nervous and high strung... DUH!!!
I stoped trusting most Doctors after that. I was so "Lucky" that I found Dr. Hessler in Jan.1986 and he realized something was really wrong and sent me to the Neuro Surgeon.
It's only been a couple of days since I joined this site, and I love it. All of you have been so welcoming and thoughtful. I don't think it really matters what type of MS the Doctos give us, except when they labled me with CPMS, and every treatment they tried failed to get good results.. They would give up on me.  Not the team of Dr. I have now. They keep looking for any new treatment that might come along. We never know what tomorrow will bring, do we.
It's so funny I am use to being amough the younger set, I have a hard time wrapping my mind around the fact that I am almost past middle age...It's OK, every B/D  I have is a gift, Shortly after I was diagnosed the Dr.'s gave me 5to 8 years to live, but I informed them that They weren't in charge of my dying date. Every day I wake up after a nap. I think of that day as a Blessing, even on my worse days, I try to make it into something positive. Like with every one else, some days are better than others.
I am so grateful to Laura for leading me to MEDHELP and to all of you and your many kind messages..
My real Name is Donna and my Friends call me DJ, Shadow happends to be my Mom's kitten hince the name "Shadow's Sister". My Kitty is 15 years old his name is Smokie..
Well I have kept you far too long. so I'll sign off for tonight. I do Hope I'll hear from you again... Have a love filled day tomorrow  
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