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Multiple Sclerosis is a beast and for those of us who have been living with it for many years we find it hard to find a support group where we fit in. I would like this to be it. A support group for those of us living with multiple sclerosis who are no longer relapsing remitting. Judgement free zone, always respectful zone and keeping it real and honest.
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Community Voices

Six Month Neuro Follow Up

Had my six month follow up appointment with my MS Neurologist today. He had a third year neuro resident working with him today. I told her about my concerns and she did a quick neuro exam. I noticed that neither of my legs had reflexes, which just six months ago they were hyper reflexes. I asked should I be concerned and was told by her that she may have not hit the reflex in the correct spot. I’ve had this done for over 20 years, she hit them in the right area.

My MS Neurologist came in and wanted to talk more about my recent shoulder surgery and recovery from that as well as my recovery from Covid from 12/31/21.

He did a very minimal neuro exam and didn’t redo the reflexes. I suppose the best outcome from the visit was getting approval to go ahead with my Ocrevus infusion. It had been delayed due to me having Covid (almost 8 1/2 months between infusions instead of six).

I absolutely adore my MS Neurologist, have been with him almost 20 years but this pandemic has changed him. I can tell he’s transitioning to retire soon. Maybe that’s for the best, especially if he’s starting to cut corners and not actively listening.

Anyone else have non reactive reflexes in their legs (knees and dorsal/ankles)?

Grateful for the abilities that I still have but can definitely tell I’m progressing.

#msprogession
#wehavems

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Community Voices

Hello, I'm Peggy

I've had MS for 43 years this March. I've coped fairly well by acting as if I did not have MS. For some reason way back when, I thought I needed to hide the fact that I had MS. I don't remember why I thought it was necessary. Maybe it was related to my job. For the first 15 years or so I had many relapses and was in and out of the hospital. Back in the early '80s the only treatment was ACTH injections for 10 days for exacerbations. In the mid 1990's my exacerbations stopped and I went along with my life and to all appearances nothing was wrong with me. I was able to work as a CPA for 32 years. But we all know about "invisible diseases". People often treat us like nothing is wrong with us, but we are struggling with multiple issues. In my case, a lot of that was probably my fault. In the past two years my life has changed drastically. I started to need a cane. Then I couldn't walk at all for any length of time. With that, I sort of lost my independence. I am still trying to figure that out. But, I always remember that I have been so very blessed!!

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Community Voices

Winter Blues

Is it just me or has this year just flown by? I find when we change over to daylight savings time it has an affect on me, mentally and physically. My husband has always had SAD (Seasonal Affective Disorder), but I never have experienced it until last year.

I find that as the weather changes and all of the ups and downs with temperatures, it affects my MS therefore I think that’s why I have now have developed SAD. As I progress with my disease, the weather bothers me more physically, which takes a toll mentally.

I’m dreading Thanksgiving and Christmas and having to tell family members and friends that I don’t want to be around large crowds, especially those that are not vaccinated for Covid and Flu. I don’t want to host any gatherings or have anyone outside of my bubble stay overnight in our home. This leads me to my last paragraph.

I read a post on Instagram that really hit home for me. I’m not depressed, I’m not sad, I’m optimistic and have so much hope, but despite this, I’m not happy. All of this is so true. I don’t quite understand it but undoubtedly it definitely has a lot to do with the ongoing pandemic and state of affairs we’re in.

I wish everyone a Happy Thanksgiving and I hope all of you stay healthy. 🧡

#SeasonalAffectiveDisorder #sad #msprogression #optimistic #hopeful #unhappydespitebeingoptimisticandhopeful #momswithms #HolidaysAreHard

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Community Voices

Progression

Progression, what does that even mean in the world of those of us living with multiple sclerosis? Sure we can look up progression in the dictionary. We can research what progression means for persons living with multiple sclerosis. We can even ask our neurologist what progression means. And you know what? We would get all kinds of different definitions.

We’re not a one size fits all and I for one want people to realize that; our physicians, our family, our friends, our coworkers, etc.

#snowflakedisease
#MultipleSclerosis

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