RRMS vs PMS: So I am newly diagnosed as... - My MSAA Community

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RRMS vs PMS

ktaylor8899
ktaylor8899

So I am newly diagnosed as some have read my previous posts. The neurologist originally thought I would have RRMS due to the history over the last year. But now he is concerned it may actually be more progressive because I haven’t got any better in the last few months- I fact my cognitive abilities are declining quit a bit I can tell. Along with lesions all up in my brain and spine. My legs have ongoing weakness, burning nerve pain, muscle spasms in my upper body and loss of feeling in my left arm. Some days I straight up cannot walk or keep my balance or even open a bottle of water. I have what the Dr considered “severe” demyelination in the left frontal lobe. He basically told me it is what it is and it won’t get better. If it was RRMS wouldn’t I get better to some degree or have a break? I am still not familiar with what to expect- but he seems to think it may be more progressive that RR now. Any insight as to how to tell the difference? Also for those that have frontal lobe demyelination affecting cognitive ability is there anything you do or take to help? I am in the middle of finishing my Masters and I find studying so so hard now :( I am a 4.0 honors student who could take 5 classes and work full time now I have 2 classes and I am struggling to even comprehend what I read without doing it several times. Not to mention I work in HR management and I see it affects my job. I just need to know there is hope for normalcy Cause as my Neuro put it “don’t expect normal cause your disease is not normal.” I just feel like all parts of my life are spiraling. And I just went out and adopted a new puppy while I am out of work. I am gonna be an old dog lady at 30 haha

28 Replies
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Gosh, I’m sorry to hear this. I think diagnosing someone as progressive usually takes time and history. Everyone is so different. MS is a messy puzzle.

Are you sleeping? Getting your ketones in the therapeutic range for neurological diseases could help you think. Forcing meditation breaks (when the puppy naps?) could help. Taking a semester off could help. Seeking out fewer hours at work or school could help.

Did your neurologist offer any medication for fatigue? I take something, plus caffeine or else my morning is difficult. If my ketones are too low to help me think clearly, I drink some in the morning. This has been far more effective for me than my prescription and caffeine alone.

I would feel that way too!

ktaylor8899
ktaylor8899
in reply to kdali

I feel like it is a early early for him to say progressive as I have just started my rebif and even that takes 8 weeks to see a change. I think he just has horrible bedside manner lol I am out of work for the next 5 weeks so I am gonna focus on my health getting it all in check!as much as 8 can meditate and yoga and get my diet in good therapeutic range for Keto. What do your macros look like? I feel like I can handle the physical stuff, but it is more depressing to feel my mental state go. I feel I am pretty smart haha so I am not use to struggling with things that use problem solving and cognition.

kdali
kdali
in reply to ktaylor8899

He might really think that based on what he sees, but he can’t know for sure until there’s more history. I love this plan!!!!! Good for you!

I have no idea what my macros are now 😵 I just check my levels and carry on, unless they are low, but that’s usually because we ate out. Last two days I’ve been at 2.8 and 3.1.

Exactly. I was only slightly more useful that a new graduate totally lost nurse before I retired. I was use to running circles around everyone, helping everyone, and cracking awesome jokes. I wasn’t just dumb and slow because of MS, I wasn’t ME anymore! 😭

ktaylor8899
ktaylor8899
in reply to kdali

Basically how I feel I resign from my job as a peace officer when I felt the physical aspect going then went into HR for the state, I do a lot of communication and memorizing union contracts and legal hiring stuff and it’s like all of the sudden I just forgot what I knew. I plan to go back because I can’t let all the income be on my husband (he is LEO) and I know the more Overtime he does puts him in more danger. If he promotes then I may consider resigning but I hope to stay at work a while longer.

kdali
kdali
in reply to ktaylor8899

I hope these next 5 weeks give you some relief and restored thinking ability. Maybe something will have to change with your work, but maybe it won’t and you’ll forget this load of worries soon.

I am glad you are here, btw. I’m Kristi from FB 😁 I don’t know if you realized that by my posts 😂

There are others here who are progressive and hopefully one of them can share how they went from relapsing to progressive and the time frame.

ktaylor8899
ktaylor8899
in reply to kdali

Oh haha! I was wondering lol

erash
erash
in reply to ktaylor8899

Is this neuro at an MS specialty center? I think I'd want a 2nd opinion.

ktaylor8899
ktaylor8899
in reply to kdali

I feel like it is a early early for him to say progressive as I have just started my rebif and even that takes 8 weeks to see a change. I think he just has horrible bedside manner lol I am out of work for the next 5 weeks so I am gonna focus on my health getting it all in check!as much as 8 can meditate and yoga and get my diet in good therapeutic range for Keto. What do your macros look like? I feel like I can handle the physical stuff, but it is more depressing to feel my mental state go. I feel I am pretty smart haha so I am not use to struggling with things that use problem solving and cognition.

I sorry too ktaylor, yes this M.onS.ter is a wacked out puzzle of mystery, Kdalu has great advice for you, have u had the spinal tap to see what your Oglagonical Bands are, at first my neuro said maybe RRMS until she saw my O-Bands wete too high in Cerebral fluid. Then she said I was a little progressed, I am still trying to cure this All Natural!😍 Cuz, IT SEEMS THERE's no middle ground for any of the RX's!😍😄😃💘🙏😻giid u got a companion puppy, all our furrr babies are great healers!🐶🐺Many Blessings to ya! ---Jazmine

Yes I got a spinal tap done before I left the hospital I got the results in Banding about two weeks ago but had no clue what it meant. The results were emailed to me- >10 whatever that means he never went over it with me. So I didn’t know it plays a difference in if they think it is progressive or not... interesting to know— I wish he would’ve just explained it to me better than him saying “it’s just all bad” :(

And yes I love my fur babies ! She’s an 11 week old German Shepherd my Boarder collie needed a little sister

Oh wow! 10 in C.S.F. tht's high sweety, mine are nine & they say @ Mayo Clinic where they are sent 4 - is normal with no signs of M.S. ouch! i C why he said progressed, well I hope the Keto & diet change wrks. Out for u. Many Prayers for U & Blessings sent Your way😍🙏😻👍💞Hang in there, take care of You.---Jazmine

jackiesj
jackiesj
in reply to Jazzyinco

long ago i went to Mayo and it is amazing.Did you get to see the Mayo brothers ceiling with the angels?Best wishes...

Don’t let anyone get you down I do know with MS you have to Pace your self. I know when I was diagnosed it wasn’t easy for me. I had a 6 year and a eight year old and I was working at a school system with younger children. Try to keep your self moving and hydrated and eat well. I know when I was diagnosed the whole thought of having a disease can bring you down. But like you say your a strong person do as much as you can handle don’t over do it. This hot weather will bring you down physically and mentally. Have cool packs with you when you can to try to keep your body in check.

Good luck 👍

So sorry that you are struggling. I'm wondering why your neuro is using Rebif when there are newer, much more effective, DMTs now. If he doesn't specialize in MS, I'd find one that does, an MS center, or a high end place like Mayo or the Cleveland clinic. Maybe the quick progression can be stopped.

ktaylor8899
ktaylor8899
in reply to Iona60

I think that’s a good idea, I am having my PCP see if she can refer to someone who specializes because I think this Neuro doesn’t.

Have you met any MSers locally? They could be a good resource for finding out which neuros are good/not so good. Or even your Rebif nurse.

I know Rebif and Copaxone have informational lunches and dinners so I imagine the other drug companies do as well. The first one went to was very strange—I was seated between the best and the worst people but I got some good info about the local doctors.

With Rebif you can also call a support line (Lifelines?) and talk to another MS patient—I haven’t used it but I think they try to pair you with someone similar. Finally, have you heard about any support groups? Another good place to find local MSers.

No, my neurologist suggested a support group for both myself and my husband to go to would be a good idea but i don’t even know where to start with that.

I couldn’t find any local support groups by searching online—only from meeting people at the dinner, and from a neuro office. (I just tried searching again, no luck.) But I think I’ve found a source for locating the right doctors! I’ll post below.

Iona60
Iona60
in reply to ktaylor8899

I would jump on this. I was diagnosed at the er at Mayo clinic in FL. It was 13 years back, but they were ready to do plasma pheresis. Thankfully, mine was rr and responded to steroids. Are you sure that you need a referral? If not you could contact Mayo or another neurologist directly.

ktaylor8899
ktaylor8899
in reply to Iona60

I have an HMO so I need a referral but my doctor is pretty good; she refers me to whoever I ask to be. So I know if so FIND ONE she will take care of it

How to find an MS specialist? I think I’ve found a good source! Turns out I’m quite lucky to have three in my area and I’ve now had contact with all three. So, while I may not particularly like the first one I went to, I realize now that I’m actually lucky that I have more than one to choose from.

Search here for your state: mscare.org/search/custom.as...

So sorry for your rough start. Hopefully things will get better. In regards to support group, check for a local National MS society or a national one they should be able to give you some groups. I think initially good for you and your husband.

Both of you will be sanctified through this. Others who are going through this have a lot of info to glean. My first MS not newly diagnosed meeting was with a group of people who didn't have access to DMT, due to them not being available. There were some severe cases. What impressed me most was their spirit and hope. It also inspired me to find out as much as I could to hel p myself. Do your homework on the computer also, knowledge is power.

Prayers for you and your family and all experiencing the ravages of MS, with hope and joy in finding relief.

Bonnie

Thank you!

Welcome to the family! U will find so much support here!

It sounds to me like u need a new neuro asap. Did they do IV steroids on u? Did he offer u more than just rebif? If u have progressive as he thinks u mite i am shocked he didnt try Ocverus for u.

As for thinking and cog fog i use Nuvigil to help with that. Without it i wud be a drooling lump on the couch

Thank you! Yes I had 5 days of IV steroids 1000mg and I was ok for about a week and then it all came back :/ see he hadn’t mentioned anything else so I really think MS is not his “thing”.

Ya totally. Be ur own advocate and demand the best care. I used to be a push over but not any more. My neuro is a bit odd so i started asking for his clinic notes after every apt. Even his quick apts - i was amazed how perceptive he was! A 5 min “drive by” apt wud end up with over 2 pages of notes. Now i trust him

Oh bless u hun I'm in the UK and nice to meet u xxx I'm highly active RRMS apparently. My Neuro says that's why I'm on Tysabri to calm it all down! I have lesions on brain and spine and its rapidly evolving MS 🙄🙄🙄🙄. I think it's all very confusing and I'm a staff nurse with over 20 years experience in liver and pancreatic cancer and endoscopy. I've had to finish work and I'm in the process of early retirement which sucks frankly! I'm giving u lots of hugs and care from across the pond. I've also had to put my registered general nurse part on hold at present which completely naffs me off! Sorry rant over and ill shut up lol xxx xxx ❤❤❤❤❤ and I think a new Neuro for u sounds a good idea xxx

I’m sorry, it’s hard to see how much this horrible disease takes from all of us— I had to resign from my career and go a new path and I am still struggling :( I just pray I can get over this hurdle and maybe it’ll get better over time

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