Greetings to everyone. I joined this site yesterday. I'm still finding my way around. I was diagnosed in 2018 with PPMS at the age of 57. To say I was stunned is an understatement .
Hello! I'm new here: Greetings to... - My MSAA Community
Hello! I'm new here
67 Replies
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Welcome to a wonderful family of helpful, supportive people. I’m sorry about the diagnosis and the shock you felt, but hope you find much encouragement here.
Feel free to share more about yourself, your hobbies, and your questions..
in reply to greaterexp
Thank you so much!
Jesmcd2CommunityAmbassador
Hi Hidden nice to meet you! You will have this place figured out in no time!
I'm sure you were stunned! Although I think we all are stunned at 1st. 😔 How are you doing with it now? 🤗💕🌠
Welcome to the group! It's a great place to be. Looking forward to hearing from you.
carolek572CommunityAmbassador
Welcome to the forum, Hidden I, too, have PP'ms' and I am your age. However I was diagnosed in 2006. I discovered this forum in 2018, and it is a fantastic place to connect with so many members who are also knowledgeable about 'ms'. Together, we are all so much stronger. Keep Smiling 
in reply to carolek572
Thank you so much for the warm welcome! I am thankful I found this site.
Happy that you're here, Hidden I am going to shamelessly promote the Coffee/Tea hour on November 5th at 12 noon EST. I hope that you can join us for an hour of smiles, laughs and frivolities!
in reply to carolek572
Thank you for inviting me! Pardon my lack of cyber knowledge, lol, where and how would I attend ?
There will be a post on that day, and you attend by simply replying to it, Hidden
in reply to carolek572
I'm fairly certain I can handle that! 
Thank you.
Welcome to the group. I have never been one for support groups and such or so I thought, but I have really enjoyed this group. There are lots of nice folks, any one of whom can relate to most things I encounter at one time or another. It’s nice having people who understand. There is so much talent in this group, too. Not me...I just admire it in all the others! I’m looking forward to getting to know you. Wishing you a beautiful day.
in reply to Tinker-Belle
Thank you Tinker-Belle for the most gracious welcome! Is it my imagination or is this site a tad more accomplished than others? I really do feel welcome. Like you stated, I , too was never one for support groups. This is very different in a good way!
Tinker-Belle in reply to
You got me! I never gave any others a chance. 😆 I enjoy learning from everybody. Although we are all so different, it’s nice to hear about other experiences and talk about ideas, laugh, and just be able to relate to one another.
Welcome to our crazy 😜 group of ms’ers. Great place to vent and find out questions from people who care and live with MS. We are not doctors but there are No stupid questions here. What were you diagnosed with, RRMS? Welcome again Ken 👍🙏😉🐾🐾
in reply to Kenu
Hi Ken! thank you so much for the very warm welcome! To answer your question I was diagnosed in 2018 at the age of 57 with Progressive Primary MS. I was stunned to say the least. My late sister had PPMS as well. Sadly she passed in 2011 due to her house caught fire. She was unable to get out. I'm 60 now and starting to really have many cognitive issues. At time of diagnosis, I was also told my brain has shrunk and full of lesions as well. Generalized Cerebral Atrophy was the term. It's upsetting and to be honest a bit humilating as well. I worked for 30. CPS. Now I cannot even cash my own disability check. My husband has to be payee as I cannot handle money. Where will this end! How are you doing?
Kenu in reply to
Sorry to have to meet this way. Stay positive and keep moving forward as life isn’t over. Glad you have a good husband 🤞👍🙏🤗 Ken 🐾🐾
Bnali in reply to
I am not sure if this will help, but have you tried Lumosity? I have been doing the free version for a while. My neurologist had suggested it to help when my cognitive function started declining.
in reply to Bnali
I have not, thank you as I've never heard of it. I've my neuro appt. coming up and will mention it. Any side effects for you?
Bnali in reply to
Sorry, It is an app I have on my phone. It is several different ‘games’ to help strengthen and rewire cognitive skills. 😊
in reply to Bnali
I can't stop laughing! "it's an app"...good thing I know prior to my neuro appt!
Bnali in reply to
I realized I did a bad job explaining when you asked about side effects 😅. I was so glad to read you had not gone to your neuro appointment yet, that was definitely not the first impression I wanted to leave you with. 🙃
welcome,tell us about yourself,at first i tried to navigate myself, then I found this amazing group that keeps my sanity
Welcome robbie2499!
I too have PPMS. I was diagnosed in 2017. All I have to say is...this group of loving, caring folks have helped me more than anyone I live with or around. The cool part is when I’m down, troubled, concerned or overwhelmed these are the people I turn to. Use this site/people to help you navigate this journey w/MS. God bless you my friend.
Robster1 over and out. 😎😎😎😎
in reply to robster1
Hi Robster...(I love that name)! This is the only site, at least so far for me, where I have found more that a few others with PPMS. I know it's rare but still. I feel at home already.
robster1 in reply to
I have learned to always rely on more than myself. By myself I can make a mess out of me.
We’re here for you my friend...ALWAYS!
Robster1 over and out. 😎😎😎😎
Welcome to the forum. As Tinker-Belle says (as usual) so well, this is a good place to visit. I start every day here, checking in on my friends. As you will discover, this is a widely scattered, extremely supportive, multi talented family. This is a safe place where we can grouse and gripe, fret and question, tell jokes and laugh, and celebrate accomplishments. As for me, this MS family is the only support I have, the only place where I find help and understanding when I am struggling, the only place where people are non-judgmental.
in reply to goatgal
Hi goatgal! Thank you for your very kind welcome. I can already "feel" the connection, support but most of all other that truly "get it" and "get me". It's such a complicated disease and so many things affected.
Amore55 in reply to
Welcome! Like goatgal says, this is the safest place I know to be yourself. Please keep coming here often, we welcome you! Love, Kelly
Good morning & welcome... positive thinking & never give up on you.. push yourself
in reply to Red_TLE1980
Thank you so much! I appreciate your "push yourself" phrase. If I'm being honest, there are days I wallow.
Amore55 in reply to
We all have those days trust me!
Red_TLE1980 in reply to
I have days like that.. there are days when my legs just ache 😖 like crazy & I wanna have a pity party all by myself cause no one else seems to understand but I talk to myself & once I actually start it gets better.. that’s because I pushed myself 😜♥️ Hang in there love there’s going to be a brighter day
Welcome and I will hope for the best for you
in reply to Turtlepie
Thank you! Everyone is so kind
Welcome to this wonderful site!!! I am sorry for your diagnosis. But being part of this group will be helpful to you! I love in the NW corner of Arkansas, in case you are close to me!
Thank you for your gracious welcome! I live in NY, but just a cyber jump away!
Robbie,
Looks like you have family. There are no coincidences. Cant add to what has been said. Peayers for you & your family, your journey and caretakers. God provides strength to handle, just do your part
Welcome, But sorry for the reason(your diagnosis with MS) I have been living with MS for almost 13 years now, and the good news is the choice of treatments available now, when I was diagnosed there were 4. Best wishes stay strong Robert
Welcome. Although the diagnosis was shocking, this group will be your release. You will find experience, encouragement, comfort, and the best resources for traveling this road. The most positive group I have experienced since my diagnosis. Welcome to somewhere to relax.
This a good place to learn about MS issues.
Welcome to this great group Hidden , sorry for the reason. Jump in anywhere or start you own message. This is a great group to celebrate with, vent, ask questions, and anything else. Look forward to getting to know you.
in reply to bxrmom
Thank you kind soul! I feel welcome...
Hi robbie2499, welcome and sorry to meet this way, but this is a great supportive site. And I too check it early every day to see how my friends are and if there is a need I can meet. I was 55 when I was diagnosed with PPMS 9 years ago. You are right, it is a shocker and if you are like me , not where I thought I would be in retirement after many years in a rewarding career. But here I am! I am very limited in my mobility, but my husband and friends are angels who help me tremendously. Cognitively I don’t think there has been much decline. Sometimes a bit forgetful but I attribute that to age. My husband says he doesn’t worry unless I repeat myself. I stop him there and tell him I only repeat myself because we have been married 43 years and sometimes he doesn’t listen! You hang in there. You are like the rest of us, stronger than this disease! God Bless you
in reply to DIsneyQueen
Hi DisneyQueen...So good to meet in another in similar circumstances! I love what you said about your husband....so true!
Hi robbie2499, welcome to our group. I was dx with PPMS 5 years ago at age 65 so I underestand what you mean by stunned! Also, I live in Maine so we are from the same corner of the country. Best wishes!
in reply to bavery207
Hi bavery! Would it be strange or odd to say I feel a bit comforted by your diagnosis? lol. How are you managing?
bavery207 in reply to
I have been staring at the screen for several minutes trying to figure out how to answer your question. A seemingly simple question with a complex, emotion laden answer. I am doing OK all-in-all. I am still walking, but much shorter distances and with much less balance . Part of my funk has to do with the pandemic and keeping to myself so much the past few months. I am blessed with a wonderful husband and family, am able to take Ocrevus, and am doing fairly well. I hope you will be as blessed.
Yes, a diagnosis does rather knock you to the ground. This is a great group of caring people. Welcome!
Welcome! I know how you feel. Diagnosed summer of 2019. This is a great group.
Hi Robbie and welcome!
Glad you found us! This is a great site. Everyone here is great, helpful, and understanding. I was diagnosed at 50 for my birthday with RRMS. I just tell everyone that when you turn 50 the warranty runs out and everything starts to fall apart. Sorry to hear you are having cognitive problems. I am too and lately, it seems to be getting worse. Not sure what's going on. I have an MRI coming up soon, maybe I will find out.
in reply to hairbrain4
Hi hairbrain....(you must have a good sense of humor; I love the name) ! What a shock for you as well, on your birthday besides. I wish well on MRI coming up. I find a sense of humor really is the best medicine for my cognitive issues because somethings I say ARE odd ,funny and usually a surprise to me as well! Thank you for the warm welcome!
hairbrain4 in reply to
My husband and I are hairdressers and owned a beauty school until he had to have heart surgery, and had complications from it. That's where the name came from.
I’m happy you chose to find support with processing such a life changing diagnosis Robbie. Welcome.🧡
in reply to tiffortat
Thank so very much!
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