Hi, I'm Bonnie and I'm new here

[silvereyes]

I was diagnosed at 23 with MS. A year later was rediagnosed with PPMS. I have been on numerous treatments and nothing has slowed down the progression. My dr told me years ago he had only seen one other case as progressive as mine and I've even done a great deal of research trying to find other cases like mine and have not been successful. It isn't that I wish for others to have my experience, it's just that I have a difficult time finding others who can relate to my situation. I look forward to familiarizing myself with this site and the members.

[Jesmcd2 CommunityAmbassador]

Hi silvereyes I am so sorry to hear this. There is one person here that might be able to help you. Allen5280 has aggressive MS also.

We are certainly glad you are here tho.🤗💕🌠

[greaterexp]

Welcome! I’m sorry that your disease is so aggressive. I hope others with similar issues will chime in here. I hope will feel supported here.

mymsaa.org/

Be sure to look at all MSAA has to offer.

[HarleyKing]

I too have PPMS. It has been a fast ride downhill. I lost my bikes in January, a wheelchair in June. I understand what you are going thru... trust me.

[kdali]

Welcome!

I’m sorry you have not yet found what you are looking for. Most 20 year olds with an aggressive progressive disease have not made a presence here, yet. Maybe you can change that! I understand feeling isolated among those who share a similar diagnosis. You will get back what you put in here and then some, and sometimes that’s exactly what a person needs.

GL!

[Raingrrl]

Hi silvereyes ! Welcome! There is a broad spectrum of people dealing with MS in this forum. I’m sorry that you are experiencing such an aggressive version of this beastly disease. We are a such a wide range of ages and experiences so you are sure to find people that can empathize with your experience.

[Jackjosh]

Hi welcome

[Violetberg]

I was diagnosed with PPMS in 1984. I have tried everything starting with BetaSeron and just recently with Ocrevus. Nothing slowed the progression.

I stopped taking the Ocrevus because I was getting much worse. I should have done more research before taking it because the criteria for Ocrevus is you have MS for less than 10 years and able to walk. I didn’t fit either. I was so excited because it is the first PPMS approved medication that I went full steam ahead. My co-pay was $4500. Five co-pays later I finally got back to reality. I’m not giving up. I’ll just wait for the next silver bullet.

[silvereyes in reply to Violetberg]

I can relate. My neuro had been telling me he couldn't wait for Ocrevus to be available for me and I began treatments as soon as possible. If anything, I progressed faster. My mom, who is my caregiver, called the pharma. co. and spoke with their medical specialist. When they heard what my condition what when the dr started me on it they were floored. They couldn't even hide how concerned they were that I had been given ocrevus, given my edss score when I began treatment.

[Violetberg in reply to silvereyes]

Thank you for your quick reply. The more I dwell on my stupidity for not doing any research before my infusions the madder I get. I decided to call my neurologist to have my records faxed to my new dr. As of today I am going to be my own advocate. Looking ahead instead of back. They say you can’t unring a bell so I’ll just wait for the next miracle drug and bell.

[Peruzzot]

Welcome to the group! As others have already said, we have a wide variety of people here of different ages and versions of MS. A few have very aggressive forms of it. How old they are I'm not sure. I'll be 50 in a few weeks and am still classified as RRMS.

[rjoneslaw]

welcome

[RoyceNewton]

23 wow, you have a long way to go, perhaps one of the ms specialist clinics around the country can provide you with some guidance

[Jazzihorsecat]

Silvereyes, a very, very warm welcome to the family here, I too am very sorry for your prognosis, I was just finally Dx'd last year in May after 11 years of mis-diagnoses, age 48, then found out I have had it for many, many years before, I shook & tremored when I was 17 years old, I just thought it was my nerves being shot because of stupidity of doing drugs(laced Mary-Jane w/Crystal Meth), then I noticed I was always very Constipated(clogged up). Come to find out, through mega research, ((we kind of become our own Dr.'s through all the research of everything & anything we can get our hands on))) that & my hub/cg is an herbal Doc. Himself.😀

I found Many Herbal YAH/G*D sends, first2 were, Ann Boroch's books (Life-Changing) "Healing Multiple Sclerosis", & "The Candida Cure", & The web-site Digestionsos.com or org, many great info. For our disease...

We have 2 precious brains, 1 on our head & one in our guts(Small I.ntestine & L.arge I.ntestine) & whenever 1 of them is clogged, all of it gets clogged & cause a plethora # of Auto-Immunes Diseases, we have to 1st clean our leaky guts, then heal them, & we can really, really heal & manage our chronic diseases.

I started Progressing from a very moldy (Toxic-Black Mold) apartment I lived in, & so, I started to clean out my leaky gut & finally Blessed 🙏💐to move out of there,😃😀😄👍 & then now, I am really keeping in a good Remission, got an A+ from my neuro. She said whatever I'm doing, to keep it up!💗😀

Well, sorry for the long winded letter, but I am here to always help. Many Blessings to ya!🙏💐 & never forget you are now family too!😍💗 much love!

Jazihorsecat

[kwhompus]

Hello silver eyes, I too have ppms since 2005. For the last 3 years I have been treated with Ocrevus. Does it work ? Hard to tell. If I stop the treatments I may become worse or progress at a faster rate. Its really a catch 22. My condition has worsened steadily since my diagnosis. I understand your concerns about what the future holds for you. searches for answers have left me frustrated. 6 years ago I was working as a mechanic, today I struggle to move around the house with a walker. I too am new to this web sight and look forward to any helpful insights people are willing to share.

[falalalala]

Welcome!