Just curious I'm hoping to find information. Do any of you know what criteria the doctor uses to determine and set a stage of MS? I was given general diagnosis in August, now waiting for results with more MRIs spinal tap nerve conduction test and lots of bloodwork
Stages of MS: Just curious I'm hoping to... - My MSAA Community
Stages of MS
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I know they use EDSS score expanded disability status scale based on physical disability and the timed 25 ft walk test. Then based on MRI activity and progressive decline. I myself have wondered if there is a certain criteria the changes you from relapsing remitting to secondary progressive MS?
What is EDSS? Learning something every day
Search kurtzke expanded disability status scale edss
Sure learned allot since yesterday. I would of thought the docs would of used something more closely related to how many and where locations of lesions. I guess my thinking is too limited.
Actually glad not related to # lesions as my MRI looks like a Swiss cheese brain and ironically I have a very low EDSS. Unfortunately, the Swiss cheese is getting moldy and my symptoms are beginning to poke through.
You might also find the swimming pool analogy of disease progression interesting. This is also a relatively new way to describe the progression of MS. I'm on my lap to today and can actually give you the link (worth watching the video) scientificamerican.com/arti...
Hi CalfeeChick, sorry I can't help you. My doctor here in the uk would not let me have a spinal tap, but he did plenty of blood work for vitamin deficiency, especially vit D. I am interested to know what other tests you have over in the state? Thanks Jimeka
Hi, I'm not sure of all tests, but I've had MRI'S, spinal tap, nerve conduction tests on legs and feet. Lots of bloods tests for specific antibodies, deficiencies, allergies, rheumatoid factor. Not sure what else. Maybe others could answer more info.😊 Lynn
Most of the testing done is to rule out other conditions, not rule in MS. The MRI and clinical signs are most definitive. See McDonald's criteria: demyelinating lesions that change over time and/or space.
They recently have added brain atrophy as well as # of lesions seen on MRI as a means for staging MS. The brain atrophy likely accounts for much of the cognitive changes 🙁
Thanks erash, what do they do for brain atrophy?
Atrophy is a normal aging process that's accelerated by MS. healthy lifestyle (nutrition, no smoking, and especially exercise), and having a rich cognitive reserve, aka a higher education level, are your best bets for slowing the effects of atrophy.
Not for me. My neuro said I have a 'fat brain.' Finally, fat is a good thing! My cognitive issues are due to plaques. Personally, I think the fat brain is from exercising it excessively-you know, the hamster on the wheel thing. That's me, constantly talking to myself inside my head, trying to remember this, that, and everything else! I wonder how bad my cognition would be if I wrote everything down (to get it out of my head) as I was told to by the therapist! 😱
🙀😀😅😂😂😂😂😂😂😄
Fat brain, what ever next! How do you go on a diet for that Tutu? Dressed as a scarecrow, now a hamster on a wheel, I am supposed to be going to sleep, not laughing my head off. Thank you, they say laughter is the best medicine. X
😁
Had to read that twice. My husband would say the same for me.. alway churning the wheels, this is the longest I've ever been sedentary in my life. I've poured my energies into research on Ms.. since July I've made 5 afghans, 4 hats, scarf and fingerless gloves for grandkids birthdays & Christmas.. started 6th Afghan yesterday. After that, still have 2 more afghans and a hat to make..wheels turning all the time..
Wow, good for you, Lynn! I've lost the ability to do the crafts I used to love. And with my inability to learn something new, it is a challenge reinventing myself. But I still try. I hope you find satisfaction in your many creations! I know the recipients will love them.
Tutu, yes, reinvention! , I have some serious fine motor coordination issues, a little blurred vision, and tremor, but I'm going to try painting again. I've just decided I will dabble in more "modern" art that's colorful and imprecise. Ive taken first step and put a canvas up on my easil. Hope I won't become too frustrated. Will let you know how it goes.
Send us pictures of your paintings plz erash 
Will do and if turns out bad I will take a photo of someone else's painting 😎
Cheater lol... how are you doing being out of work?
It's interesting. Some moments are great others I feel a little lost. Finance future feels a little scary 😬
Can sure relate to the financial concerns. More fear of unknown. Just what our delicate brains don't need. So glad we have this group and our new MS family..
😄😊💕
Ha!😃
My HA! Was supposed to follow your 'photo of someone else's painting'-NOT your concernsabout no longer working. 😐 I thought I replied in the appropriate place, but instead, it followed the thread. Sorry about that.
I figured that...it's one of the challenges with asynchronous discussions. Can't tell you how many times I respond to someone's text but someone else texted in the interim, so my reply goes to them in error. Sometimes pretty humorous
Erash, that sounds wonderful! And modern painting sounds perfect. Go create!
Thank you😊💕
Holy cow! That's alot. I'm still working on a kitting a little block blanket from last yr. I just can't focus that long anymore. There is always something else that needs to be done.
It's sad to give up things that l so loved to do. I just gave away all my candy making supply yesterday. And going to have to give up my jewelry making supplies also, but right now everything is taking up space, and l cant do it anymore.
Jesmcd2, it's an adventure figuring out what works and which hobbies I can do without too much expense.
You sound like me, Jes. I haven't created the same works of art you have, but I can no longer cross stitch, quilt, or even sew. My mind just can't transfer what I see on the pattern or directions and get my hands to replicate it. That's my problem.I count the cross stitch squares on the pattern, count them out and stitch on my fabric, only to spend the next day ripping it all out. And then, because I'm so stubbornand convinced I'll get it right the next time, I do it all over again. Isn't that the definition of insanity?!?
I used to do the printed cross stitch (sigh) lt was printed because l could never figure out the counted. And to think l was an Inventory and Receiving Manager for a Plumbing and Heating Whole's. They are packed away also. This MS thing kinda sucks lol
I keep reminding myself: focus on what I can do, not on what I cannot do...
I have to remember that. Just hard to do when your getting rid of things that reminds you of your "past" self.
I miss my old self too 🙁 But focusing on that, at least for me, makes me feel 🙁🙁🙁
Great reminder, Erash. And , Jes, I 'ditto' your reply too.
Wish mine were fatter then 🙃 Believ me, there's a lot of self talk going on inside my head. And I even listen to myself now and then 🤓
Ha! I answer myself. My husband often asks, "Are you talking to yourself or am I supposed to be listening right now?"
Thanks CalfeeChick, I have an MRI every year, I have had 9 since they told me 6 years ago. I have blood tests every year, but I have to go through hell and high water to get the results. Normally my ms nurse has to retrieve them for me 3/4 months later. They don't like parting with information over here. At first when they told me I had ms, they also told me that I had throat cancer, the MRI revealed a lump in my thyroid, turned out there was 17 lumps in it, a multi nodule gouyter (can't spell) but don't worry they said, it's easy, we,ll just wip your thyroid out. Shame they can't do the same with ms!!!
Wow, that had to be scary for you.. I worry in the back of my concerns that somehow they will find something else to scare the wits out of me.. just can't imagine what you've experienced.. glad you are here.
Multinodular goiter is typically pretty benign. But it must have been pretty scary to think you had throat cancer 😬
You've been through a lot, Jimeka. Thankful you're okay (well, that's a relative term, isn't it?). There'd be a huge void here if you weren't 💕
in reply to jimeka
Jimeka, it's MSFighter. That is absolutely ridiculous that you are not allowed to see your MRIs results or know what your test results were without a nurse getting them for you months and months later. After all, who pays for these tests might I ask ? I do believe it's probably you through your insurance. I would be the type that goes, I don't care what the system is where your at, to the head of the department or facility were the tests were done and gently remind them that you pay for the test and if they wish these to be paid for in a timely fashion, you needed to see them. The word to keep in mind here is gently. Next, I would keep requesting to see my MRI until they got so sick of me knocking on their door they would automatically share with me my test results every time I had a test done. You know the old saying Jimeka, " the squeaky wheel gets greased", " the squeaky door hinge gets oiled" and I could go on and on. But you get my point. Become a sore on their bottom side until they respond to your reasonable request!
Please keep in touch and let us know if you succeed in getting your test results quicker. Also let us know what stage of MS your doctor finds you in. Most times when you start out even if you had your MS for a bit without being diagnosed the doctors will put you in relapsing-remitting MS. Glad you came to us with this information because we value your input in this chat room and enjoy interacting with you. Take care of yourself. And remember together we are stronger!
jimeka in reply to
Thank you ms fighter. I live in the uk so I don't have insurance, mine is done on the NHS. Last time I had a MRI I was in for a total of 1 hour and 45 minutes, I was desperate for the toilet. I was too polite to ask if I could have a break, I just wanted it over and done with. My friend in Ausralia shared a trick with me about having a MRI. Start at the beginning of the alphabet and pray for everyone you know in alphabetical order. It really does make the time go quick. You find that you keep saying to yourself, " whoops, I forgot soanso, and you can make quite a game of it yourself. I have PPMS and have a brain like a fured up kettle. I have lesions down my spine, especially where I had my discs removed, T7/T8 disc and C4/C5 so they keep an eye on their progression. Anyway I will keep going until God has other plans for me and I will keep smiling. A good Christian friend said to me the other day, ms can allow a lot of negative things to happen to you Jimeka, but it will never take away the glint God has put in your eye, I felt really blessed. Keep smiling, Jimeka
Jimeka, that "glint" comes shining through here in your supportive and cheery chats 😊
Jimeka,
You're a treasure!
Oh thankyou but I have to admit I am not a treasure all of the time.
You could have fooled us! 😍
HostMom-1 in reply to
Very true. You should be able to get copies of any/all results of labs, EMG's (nerve conduction studies), & MRI's.
That way, if you decided to get a 2nd opinion you'll have what you need. At most, tell the truth they are YOUR results & are entitled to see them & have copies. You may need to sign a release of records to get them.
A low B-12 level can often mimic MS. You should have one of those done as well.
Good Luck & keep us posted.
erash in reply to
I can see why you call yourself MSfighter 😊 Bravo! 💪🏻
At least you can take AN MRI without worrying to much. The last 2 l had, l broke. So the 2 hrs went into 3 1/2 so not fun. And they want me to have mri's before every appt. Told them they better give me more valum next time, cause this is bs. Lol l almost missed my neuro appt last time, because it took so long.
I'm so sorry that you had that scare Jimeka. I love that comment about whipping out the thyroid and ms. When my neuro showed me my lesions l was like ok so when do we do surgery? Ya'll do brain surgery all the time, cut um out already.
I say if it's broke fix it, if it can't be fixed, throw it away. Makes sense right?
Add to that EMGs-testing muscles to see what muscle weakness is due to. Sorry, don't remember what (peripheral involvement, maybe?), but maybe it was another test done to rule out something other than MS. That was a LONG time ago. 😉 That's my excuse for not remembering.
I know the neuro radiologist who does my MRIs and when he first realized it was my scan he was reading, he decided to call me with the result. I was taken aback when he called! 😮 That was the only time he has done that. The MRI was stable, no new lesions. I've always wondered if he would've called if it did show changes 🙄
After awhile, I stopped asking my neuro for copies of my MRI. I'm not on DMDs and not much I can do if there are changes...except recently, I wanted to know about the atrophy since the cog fog had worsened and since atrophy was now considered a marker for progression. Still, no changes, yet my disease progresses...
Hi all, I noticed that some are signing and addressing posts with their real names rather than their user names. For the record, my real name is Liz! Forgive me if I continue to use your user names --you know brain fog and all, it gets confusing!
Liz, thanks for giving us your real name. I'm grateful that our user names are given at the top of the posts or I would forget them!
Erin (if I remember clearly)
I think I need to make a spreadsheet listing everyone's user name, real name and details. I'm serious. I am really struggling here. If I (when I am able to) read anything, it can't have more than two characters!! So please forgive me when I get mixed up. I have no doubt I will (I already have). I think I just found a new project for my newly-retired husband. 😁 Tutu Dawn 😉
Tutu make sure we all get copies please 
Now what did you want copies of?!? Ha!!! 😳
CalfeeChick , I'm sorry I haven't read through all of the replies, and so maybe I'll be saying something that has already been said. There are really no clearly defined stages of MS, or for everyone the stages are a bit different. They talk of moving from relapsing-remitting MS to secondary progressive MS, and even that transition is often hard to pinpoint because they're not always sure what a relapse is. They talk of the disability scale, the EDSS or Kurtzke scale others have mentioned. That has been modified a few times over the years but it's a way of assessing the level of disability due to MS that a person is at. Even that doesn't fit everyone's situation. It's too complicated a disorder to be easily classified into stages, maybe.
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Thanks Agate and Jesmcd2. I will look for the MSAA page. Lynn
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