Hi,I am new to this, and want to get involved with something like this as in-person support groups are not easy for me to find.
I was diagnosed with MS in 2021, and had chronic symptoms for a few years prior to that, with symptoms off and on since I was in my 20s.
My symptoms, once chronic, have gotten worse over time, even with being on meds.
I have been off work due to medical issues for nearly a year now, and I miss working. I was a physical therapist, and now need therapy myself due to the issues I am dealing with.
I am having a hard time with losing my ability to work, as well as things I enjoy. I never thought I would be in this situation so soon after diagnosis, though I may have had this without knowing it.
Anyways, I am glad to have found this site, and hope to be able to be there for others and find some support for myself as well.
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Jhayespt
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Thanks. I am doing my best. Some days are better than others. I continue to grieve some of what I have lost. I know it can take time to go through that part of it.
Welcome but sorry you had to join. I was diagnosed with PPMS in 2020 and grieved the loss of my abilities for about a year. I have a strong faith in Jesus but it is normal to grieve and at times get angry as well as scared. At this time I have gone to pt 150 times and my balance and muscle strength have improved quite a bit. Be kind to yourself. There is a learning process in this journey. I would caution you to be careful about the articles you read and listening to the “stories “ you will likely hear. Everyones ms is different. I have joined many groups and left bc of their “doom and gloom “ attitude. This group is supportive , positive, and loving!! ❤️
Thanks. Unfortunately for me, the therapy has not changed my balance, but I have some strategies to reduce the ataxia, which is such a frustrating thing to deal with. I just try to remain hopeful that, maybe, the ocrevus will stop things from getting worse. It just takes time to see how helpful the DMT will be.
welcome to the club; sadly but if you got to be here you’ll enjoy it with us. 😬
I hear it in your words the pain of needing pt and being a pt. Just know your tools and education will help support yourself as you DO know how to help yourself.
We will listen, we let you rant and we relate! Just know above all else you are certainly not alone in any of it! 🤗
Welcome to the forum, Jhayespt ! In this new normal, ‘ms’ does present a lot of changes and challenges. Your medical team can certainly assist you. You can look at trusted resources such a mymsaa.org, and there are many others, I am sure. We have many members in this forum that can speak from their experiences. I am looking forward to hearing more from you! In the meantime, keep smiling!
Thanks. From when I first started to have symptoms, and it was thought I might have MS, I hunted for information from many sources. Being a PT helped me, as it was part of my job to educate myself as much as possible. Had I not, I think I would have had more trouble dealing with everything. Also, I am my own best advocate. No one was going to do that for me, I had to for my own sanity. More resources are always good to have. I just have to be careful to not go down a rabbit hole to find info thst may not be available.
You are your own best advocate, Jhayespt , and I agree with you that it is somewhat easy to go down a rabbit hole (think Dr. Google) with all your research. I place my trust in my medical team because I place a lot of effort to find the best doctor/nurse for me, so they can give me the best care possible. What I am trying to say is: trust your medical team and not just the ‘resources’. Keep Smiling
I appreciate your advice. If you have a good team of providers, it is easier to trust and know they will do what they can to help. I am now with my 4th neurologist, as I have had issues or concerns ignored. I hope this new doctor will be the one for me.
I too am going to see my fourth neurologist this week. #4 is because the previous ones didn’t listen to me, who knows my body the best. I feel confident this is the one. Being your own advocate is one of the best things you have going for you!
I don't know if this will comfort you or make you cringe, but I have serious issues with how they diagnose MS these days. There are so many of us who spend years knowing that *something* is wrong, but the doctors either won't listen or can't figure it out. Would it help your mental state if you began thinking of your MS as having started way back when you had the first symptoms? Then you can tell yourself that you've done okay all these years and that of course it has progressed a bit as you've grown older.
I understand missing work. It took me a good year to adapt to being "retired", and I didn't even like my job! I was just so used to working for a living, and it was a major blow to my self-esteem. Just keep reminding yourself that you didn't cause this, you can't cure it, and you're doing the best that you can every day.
This is a great site for venting. We have a lot of laughs here and the occasional tears. Feel free to ask or say pretty much anything. Between all of us, there's little we haven't seen, heard, or experienced!
Thanks. I appreciate your insight. We have to sometimes change our perspective on things to come to terms with all the changes and living a new normal.
Hi welcome to our family pull up a chair & sit awhile sorry it has to be this way but we are here for each other. Be thankful for what you can still do, be thankful for each day & try to find a reason to get up each day! I am starting on my 29th year! I know some others have been dealing with MS longer than that. Finding a reason to get up in the morning & my faith in God is what keeps me going, you are now on my prayer list! Mary
Welcome, jhayespt ! I'm sorry to learn you've had to leave such a meaningful - and much appreciated! - career due to our mutual nemesis. It strikes me that MS is such an ironically unfair condition for a PT to develop. I think of how often I've been tremendously helped by those in your field, and I'd like to thank you on behalf of all of those therapists!
Thank you. I never thought I would be in this position at this point in my life. I loved my job and being able to help others, and I no longer can. I'm glad therapy has helped you. I hope that I may one day be able to contribute some of my skills to help others, I just may have to do it a different way.
It really sounds like being in a helping profession was tailor-made for you, Jhayespt, and I suspect that in time, you'll find a new way to offer your unique gifts. I benefited from so much physical therapy for so many reasons (I'm 71 now). It helped me to strengthen atrophied muscles around my knees, rehab following hip-replacement surgery, and rehab after I broke both ankles on two different occasions (osteoporosis is another condition I have). All of this therapy was at an orthopedic PT facility, but all of the PTs were so well acquainted with MS and its various demands. I could never thank them enough! And I'm grateful to get to meet you here, too.
I think you could one day turn your work/past passion & education into something valuable. It just maybe not be today as you go through your own highs and lows.
I know from plenty of time reading and researching that sometimes the best support is support from people that are similar to you and what your story is. Know that when ready you could turn this into something that helps more than yourself but know today is about you finding your new normal as it’s going to vary and it’s gonna take time. 🤗
That is a great way to look at this. I am not yet ready to think beyond what is happening right now, but, one day I will be able to. I appreciate you saying this, I think I need to be reminded of this every so often. Thank you
hi and welcome! I’ve had the same experience as you. I think this was probably going on since I was a kid. It is still hard for me to accept this and all the changes I have to make. Their are many here who can kelp and uplift you. This really stinks, it’s hard, but we can do it!
This forum has been the only support for some of us who have found that MS is a disease that separates us from work, people, and activities that we loved, and that fulfilled us. I would be even more isolated than I am without the forum family. That said, welcome. It's a safe place to express fears, ask questions, share problems, and to share joys, jokes, photos and accomplishments and milestones.
Thanks. I am glad I came across this group. I hope to be able to assist others if I can, and find some help to deal with the changes that come with this disease.
It is very hard to deal with change. I think my philosophy that has helped me most is that while you have been dealt lemons… make lemonade!
Your life is changing, but it is also an opportunity to be open to new experiences that you wouldn’t have unless MS entered your life.
Your life is not falling apart…it is falling into place.
We all are here for you and learn from each other. Who knows, maybe your PT will lead you to specialize in pt for people with autoimmune diseases that share similar challenges that require your skills. We need more pt and ot people who get it and understand what it means when we say we’re tired or can’t move a body part.
Each day is different as you’ll see. Like a fingerprint, we all have them, but they are unique. Stay as strong as you can. When it gets tough, just ask for an ear, shoulder or hug!
Thanks. I have thought about other options as a PT, such as teaching. Not possible for me to treat anyone as I have balance problems and ataxia myself. Safety would be an issue for a patient and myself. Unless that changes, treating is no longer an option for me. Teaching or consulting may be it, but teaching requires more school for me to do that. I have been advised to apply for disability and am going through that process now. It sucks being in my 40s and having to do that now. I never thought it would be so soon. Thank you for your support
Ouch! I forgot to factor in the COST...🙄 It's been a half-century (!) since I finished up my master's...😱 There were few computers on campus back then, and we wrote on stone tablets. Since we have no children, we're REALLY out-of-touch on the cost of education these days... Yes, that's a huge consideration...
Welcome - glad you found this forum. I've been with it several years and find it supportive, inspiring, informative, and even funny (with hilarious cartoons that you might see). I'm at year 29 with MS and am always looking for a new perspective and way to manage and cope. Best, Elizabeth
Thanks. I think having people to share with helps to feel less alone. It can be quite lonely at times when people don't understand what we deal with , and having a community to reach out to helps so much.
I agree. And even friends and family who try to understand (but come up short, from our perspective) can leave us feeling alone, isolated, frustrated, etc. People in this forum seem to be quite understanding, experienced, and open minded.
Well we have been dealing with this MonSter disease for so long I have heard a lot of stupid comments from supposedly intelligent persons that make me shake my head in wonder!
I was diagnosed in 2014. The thing that helped me accept my new normal was discovering a new way of doing art. It restored my feeling of accomplishment that I had lost. I hope you can find something you enjoy that helps give you a feeling of worth, like I did.
Welcome jhayespt! This is a great forum. As many others have written, this group is full of information and a great source of support and lots of chuckles along the way. We are here to help, answer any questions, ask a few, and most importantly, just be here for each other. Glad you found us!
welcome to wonderful and great people of all ages with different stages of MS and have lots to offer for answers with the different phases of this disease that we can live with but of course sometimes we think we can't but we can ...just have to at times make a few adjustments ....we are strong and we will not let it stop us ...we are still the same person we were before a doctor told us we have it ,it is a journey but you can and will live with it ....love and happiness...
Like you, I didn't find it easy to get to/from support groups, and when I tried a couple of times, I didn't particularly want to return to them because of the effort involved in the transportation process.
My MS was diagnosed in 1980, and to get from one place to another I call on a paratransit van with a lift as I use a wheelchair for distances. I also sit in my wheelchair most of the time though I can get around my small apartment without using a rollator much of the time.
This won't need to be your destiny--as everyone's MS is different. But a place like this can be useful for everyone with this disorder. People who don't have MS seem to be incapable of understanding what we mean when we say we can't do something. People with MS always understand.
So you've been a PT? I've had several courses of PT over the years, and every one of them has been very helpful. Every PT I've known has genuinely wanted to help and has found ways to be helpful. You PTs are the best!
Welcome to this group. You will have many questions and want to try out many things as years go by. This is a valuable tool to get your answers. At least one person will have been there and be happy to help. Search older posts, you might find your answers there.
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