Stages of MS & Me: Just a little info I... - My MSAA Community

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Stages of MS & Me

CalfeeChick
CalfeeChickCommunityAmbassador

Just a little info I came across right here on MSAA regarding MS stages mymsaa.org/publications/abo...

To update you all on some stuff about me. At my April appt with my MS doc he said I may have gone from "not quite sure what stage of MS, to primary-progressive MS (PPMS), I do have active lesions on my spine T2 thru T5, but had never really been given a definite diagnosis in the 2 years since I first went numb.

Anyway, because of my age, doctors, health insurers etc are hesitant to prescribe DMT's for me. My doctor, husband and I discussed what he would prefer to prescribe for me, but first he and hubby preferred to have me have Neurophysiological testing to determine how I am doing with mental focus and related mental status. He is aware I am predisposed to develop Alzheimer's and some of the testing for it would be included. My Mother, her sister and just recently my brother all died from Alzheimer's.

I was stressing myself out about the testing for almost 2 months. Buying math, puzzle workbooks and internet brain testing. We live in such an age of everything being done for us.. I haven't used a calculator for years. RESULTS: He thinks I am doing very well. I maintained my focus fairly well throughout the testing. He said he doesn't see any outward Alzheimer's symptoms(Whew!😊) He says "I am holding up great!" in regards to dealing with MS. He recommends that I try to reduce to amount of Baclofen that I am taking to 4 - 10mg tablets a day and use some CBD creams or Magnesium creams made by "Ancient Minerals" available on Amazon. I have used the daytime cream, but especially love the Night time Cream. He also recommended more exercise so back to the gym for me. So overall, I am pleased and looking forward to my next appointment in October with my MS Doctor. This ol' lady just might get on a great DMT and get some of my life back!!🚴‍♀️🚴‍♀️🧡💜💕

17 Replies
oldestnewest

Thank you for sharing your good news. I’m so happy you got a good report about cognitive function. Will you be coosing a DMT soon?

CalfeeChick
CalfeeChickCommunityAmbassador in reply to greaterexp

Maybe at my October appt. just have to check my notes to recall the one he thought might be best for me.

CalfeeChick
CalfeeChickCommunityAmbassador in reply to CalfeeChick

Just found my notes. Dr preferred Rituximab (Rituxan) for me because he feels it would be best for me.

I've been on Rituxan for a few years now and love it. If you take it I really hope you have as good of results as I have.

So glad to hear your story and how well u did on the neuropsych testing. No doubt watching ur family with AD has been difficult and no wonder u were so stressed about the neuropsych testing.

Curious, how does one go TO PPMS? I'll check out the link u posted.

And if this is ur stage the 1 DMT approved for this is Ocrevus. Would this b what u r considering?

Going to also check out the topical magnesium. In what way does that help u? The spasms?

Hope the CBD gives u relief. And glad u r getting a few answers. Must feel like a snails pace🐌

🌈

Midgey_Midge06
Midgey_Midge06 in reply to erash

I have been using theraworx relief which is basically topical magnesium on my legs for spasms. It helps but with as much as i need to use it i need to buy it by the case!

CalfeeChick
CalfeeChickCommunityAmbassador in reply to erash

CBD oil in drops under my tongue didn’t help me at all the Magnesium creams from Amazon work very well with the spasms, especially the Nighttime one. I’ve reduced the Baclofen to 4-10mg tabs a day. See my reply to Lois below for a few more details. He feels my stage my be defined as PPMS in that I have never had relief from symptoms, just gradually worsening symptoms and more obvious symptoms of focus, awkward balance, transposing words. Just found my notes. Dr preferred Rituximab (Rituxan) for me because he feels it would be best for me.

CalfeeChick
CalfeeChickCommunityAmbassador

You are right! He recommended the ones on Amazon because of high magnesium content. I got the magnesium “Ultra “, the Goodnight with melatonin, which I like the best. I also got the oil which I haven’t tried yet. I looked at CBD creams at a local vape shop and it was quite expensive. Cost the same as what I bought all 3 from Amazon. Side note: I also take Lorazepam at night to help me sleep, so a combination of that and the “Nighttime” lotion makes you pretty groggy. I feel asleep 💤 on the toilet for an hour at 3:30 this morning. 😁 I have rails that hold me up😊

CalfeeChick
CalfeeChickCommunityAmbassador in reply to CalfeeChick

Just found my notes. Dr preferred Rituximab (Rituxan) for me because he feels it would be best for me.

carolek572
carolek572CommunityAmbassador

Hey CalfeeChick,

I can personally vouch for the Ancient Minerals because I use it when my back or knee acts up.

Stay strong,

Carole :-D

Great news!

CalfeeChick What a positive and supportive experience! To have a medical professional who listens and works with you is empowering and encouraging. Getting some of your life back is within the realm of possibility thanks to teamwork.

I'm so happy for you. That's great news!!

Leslie

Love it!!!! Awesome news!!!

Blessings!!!

thanks for the link. It's a very good read. I appreciate the update cause I know it has been very frustrating to not know for sure. I really like the Rituxan. It has a very safe, long record for ms use. In my book Rituxan is almost equal to O, or the other way around. I am happy for you. ~terry

That is great news, I am happy for you

Love your attitude!

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