Hi Everyone, I'm Diane, and am quite new in this community (although not to HealthUnlocked), and while I've commented here and there and been following for a few weeks, I thought it was time for me to take a minute and introduce myself to the group.
My MS story started in the summer of 2015 in a very atypical (my middle name) manner. I had been struggling with symptoms of a connective tissue disease for about a year, but had few neurological symptoms or red flags up to that point. One day after work while simply standing on my back porch looking out over the pond, all of a sudden my legs just went out from under me. My son came running over to see if I was alright, but from that instant on, I was definitely NOT alright. I couldn't balance and had difficulty walking. It felt as if gravity was shoving me down into the ground and I needed support to steady myself.
Over the next week or two (it's all a blur) things continued to worsen and I slowly but surely became completely incapacitated. I needed help to hold my head up to eat, help to walk more than a couple of wobbly steps, and life as I knew it came to a screeching halt. It was hard to hold a book up, and I couldn't control my legs. I was terrified. An MRI scan of my brain showed many white matter lesions (around 2 dozen) in a distribution highly suggestive of MS, and a scan of my spinal cord revealed one lesion at C7. However, a lumbar puncture was negative, and my clinical presentation was not at all typical for MS, so my neurologist has been restrained in rendering a diagnosis. The rheumatologist managing my CTD and my neurologist/MS specialist met to review my case in more detail and agreed that both conditions may have been triggered by exposure to an adjuvant. If true, they wanted to wait and watch for awhile before introducing potent drugs into my system, so treatment was mainly supportive. They hoped that sufficient time away from some type of exposure might allow my immune system to kick in and restore some function.
Gradually, the neurological symptoms did indeed show remarkable improvement. My balance returned fully, I regained control of my legs, and recovered the ability to walk, although I cannot walk very far, and I don't feel "normal" when I walk. My neurologist says that the diagnosis is still somewhat unclear but that it is either MS or MS-like, and looks more like PPMS than RRMS on MRI scans. There have been no new lesions or activity since that first "neurological event." Because both specialists feel that B-cell depletion therapy would be very well-suited to my constellation of symptoms, they settled on a PPMS diagnosis and are preparing me for a trial on ocrelizumab. I am apprehensive, but hopeful. I will keep you posted on how things go.
I'm looking forward to getting to know you all, it seems like a wonderful group of members here.
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dianekjs
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dianekjs , it is so nice to officially meet you. Your story is quite dramatic, and must have been very frightening for you and your family. I am happy to hear you have improved greatly.
You'll find everyone here supportive and compassionate. As we say, "We're happy you're here, just sorry it's because you have MS." Welcome!💕
Welcome to a great place. I hope you find as much support as I have.
Though your symptoms aren't typical, there isn't necessarily a lot about MS that is! However, I sure hope it turns out that it isn't MS, and I'm glad your doctors are communicating with one another so well and are cautious.
I'll be praying you get a clear diagnosis and the best possible treatment. Knowing that everyone here understands and can empathize with you can take a big weight off your shoulders.
Hi dianekjs, I have PPMS, not nice to be labelled with, but I find the doctors like to categorise us particularly when they are faced with a dx. You have had it rough, and I hope that things get better for you. Even though all of us on here have ms, we are all a mixture of the different types. We all have similar symptoms so we can all relate to each other. Until last week I didn't know that there was a different type of PPMS, you sure do learn a lot on this site. I was told by my doctors that with PPMS once you get a certain symptom you keep it and there are no relapses, so far that has been true for me. Anyway on a happier note, this site has been a God given gift, the people on here are very uplifting, are great listener, and for me personally, they like a laugh. So enjoy 😊 blessings Jimeka 🦋 🌈
Thank you, jimeka I appreciate it. No, PPMS is not a nice label to have at all, but insurance companies like a firm diagnosis and there is more than enough medical justification to support it. I struggle with it because my dramatic improvement from when things were at their worst would seem to contradict the idea of no remissions. As my doctor said, on MRI you have PPMS, clinically, not so much. May I ask what treatment you are on, if any? It's nice to be in touch with others that can relate to some of this.
dianekjs welcome. You have had what sounds like a very dramatic initiation to MS. My own has been more insidious. I can hear the bravery and courage in your story/voice. I'm looking forward to chatting with you and sending you well wishes galore 🌈
Good morning Dianekjs, it's Fancy1959. Welcome aboard and we are glad to have you in our extended family. As you have noticed you have found a safe place to come and ask questions, voice concerns, or simply speak to someone truly understand what you're going through. This chat room is full of the most compassionate, caring, and kindest people I have ever met. Our goal is to support everyone and keep the atmosphere here very positive.
Your story is very unique yet quite typical of this monster we live with . This Beast tries to devour us each in its own way, yet many of the symptoms and results we must live with are extremely similar! Please keep us in the loop as far as your diagnosis goes. Take care of yourself and remember together we are stronger!
Thank you Fancy1959 , I appreciate the support and warm welcome. I will keep everyone posted, and look forward to learning about everyone else's stories as well.
Hi dianekjs ! I am glad you got your legs back. I am also sorry you got this strange disease. It can be very scary and having someone to talk to who may have similar symptoms can be helpful.
Most of my symptoms are sensory with muscle cramps/spasms, pain, fatigue and weakness thrown in. I guess that means no spinal lesions yet.
Keep us posted about yourself and jump in anytime with your thoughts, opinions, wishes or hopes any time.
Morllyn , thank you. As for getting my legs back, well yes in part - they are working again for basic function but they still aren't MY legs yet (or at least that's how I think of it). "My" legs can run 4 miles, waterski, and do the splits, but I'm not sure where they went or if they have plans to return. The legs that took their place a couple of years ago are starting to figure a few things out (like how to walk) but are still quite unreliable and max out walking at a little over half a mile, and that's on a good day. I hope your spinal cord stays lesion-free!
I'll add in on the welcomes to you, dianekjs - so...welcome to My MSAA Community! As you're already familiar with how HealthUnlocked formats their online communities, hope you'll be able to navigate and post more easily.
Thank you johnMSAA , this is clearly an extremely supportive and responsive community. I'm looking forward to getting to know everyone and sharing war stories (and small triumphs wherever we can find them).
Hi and welcome dianekjs! Although I haven't been diagnosed, I can relate to most everyone on here, both from a symptomatic and personal perspective. I have yet to see a doctor but you can bet the farm on it that I'm going to find one now that I qualify for Medicaid!! My legs haven't given out on me yet, but I can recall more than a few times when they felt like wobbly bricks. Once while going for a walk I had to stop and sit down in the middle of the sidewalk; I live in a large mobile home community so no benches nearby. But at the time I wasn't thinking about how or if I was going to get up, just that I had to sit down and fast! Thankfully, a kind resident gave me a ride home! I now schlep along with my folding camping chair in the bag with me slung over my shoulder like a backpack (it's pretty light) in case it happens again, but no, I'm not going to stop going for a walk because of it!! Although afterward, I tend to get home and collapse in the chair for a while! Wishing you good thoughts and positive results on your upcoming med trial!
Thank you for the welcome, Bamfan1442 . I'm afraid I've wound up sitting on the curb more than once, and have to gauge how far I walk carefully so that I know I can make it back! I'm not sure I want to strap a chair on my shoulder (I can't really venture far enough to really make it worth the encumbrance), but I do make sure I have my cell phone in my pocket and that it has a full charge. Whatever works, right?
Exactly! But since I don't have a car and my BF works 12-hour days, sometimes I get cabin crazy being cooped up in here all day alone and need to get out! I live in the "outback" on the very last street here next to the field fence behind us, so it's a mile or so to get to the front where the office and park is. Then, if I can make it that far and rest, I can walk across the street to where the shopping plaza is. And of course, there are many days when I say "no way" to walking because of the weather, pain, and fatigue so I just wait for my BF to get home from work around 7 pm and use his truck!
Wow, what an introduction to MS! Glad you have some great docs and have recovered some of yourself. I just started my MS journey last summer. So far only symptomatic meds that are giving me some relief. I have 20+ white spots, a lesion T2-5. Thanks for joining our group, amazing people here!
CalfeeChick , thank you. Yes, my doctors are top tier professionally, but are also just exceptionally nice and caring people. I am fortunate to have them on my case. You're just as spotty as I am - have they diagnosed which form of MS you have?
So far they list me as Possible MS. Dr feels the T2-5 lesion is MS but is hesitant to DX. Evidently my brain white spots do not look like a MS white spots. In the meantime I'm taking symptomatic medications that help with my numbness and tingling and my brain fog and fatigue.
Hi dianekjs, welcome, I think I commented on one of your previous posts or vice versa. Sounds like you definitely got thrown into the deep end of the MS pool (if it is MS), I'm glad you've seen some improvement. I'm interested in something your dr told you, I have never heard that they can distinguish between PPMS and RRMS based on the MRI scan. Did he offer any further explanation for this? It may be that this is possible with the newer machines. I have not had an MRI in a couple of years myself so I may be behind on the technology. I have SPMS, was diagnosed in 2005 and my MRI scans over the next 10 years were always fairly stable, though my symptoms have progressed slowly & steadily.
Hi BillD999 , I remember bumping into you earlier as well. I think that your understanding is technically correct, particularly with regard to the actual morphology of the lesions, which appear to be the same in both RRMS and PPMS. The lesions tend to be larger in RRMS than in PPMS, which may sometimes provide a clue but the significance isn't really understood. I think in my case, in addition to having (lots of) smaller lesions, there has been no evidence of new disease activity in two years, while on no MS treatment. I was told that if RRMS, we would generally expect to see more activity by now, new or changing lesions, etc., but that my presentation was not really typical of either. Interesting that your MRI scans have been fairly stable for so long, did you have obvious relapses in the earlier years? Thanks for wishing me luck with Ocrevus, I am quite apprehensive!
dianekjs , I had at least 2 episodes of numbness in my lower body as well as some vague unexplained symptoms between 1980 & 2002 or so; then I began to notice weakness in my left side which has continued to progress to this day. I was diagnosed because of vision problems which at the time was considered by my dr a relapse, even though it really wasn't because it occurred when I had a fever. So I was diagnosed as RR which soon transitioned to SP. Went through several meds for RR, without much if any benefit and now I take Ampyra and high dose Biotin, as well as Modafinil for fatigue. I am also supposed to be a candidate for Ocrevus so I will be anxious to hear how you do with it.
BillD999 I am new here, So I have not done much as far as Intro etc. I am extremely interested in how the Modafinil worked out for you? I was just prescribed waiting on approval by Insurance. I take Ampyra as well. It really helps me a lot.
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