Tired of feeling down, newly diagnosed, support and friends

[pnowsitall]

Hey everyone,
I don't know who is new to being diagnosed and put into this category and situation. Is anyone out there around the NY area? I'm 31 male that got diagnosed last day of 2011, and feel like things started to happen after taking medication. I mean, having one symtpon which was optic neuritis, now to having the "3 tests" done, it just seems...like how could this happen to "you", finally, after hearing about diseases happening to others. How could my healthy body, that would "never get sick", get something like this?

[KGage]

I am from upstate NY and was diagnosed in march of this year. I am 30 years old and know how you feel. I started with optic neuritis as well. I have already tried 2 treatments and had to stop both because the side effects made me feel worse than the disease does.

[hunterd]

WELCOME PNOWSITAL!!!!!!! great to have you here but sorry why. This is a great place to come for support and suggestions from others who have gone through the same things. I am in Northwest Pennsylvania. I don't think it matters what type of person you are, MS has no boundaries. I look forward to seeing more of you around here. Good luck

[LammyCat]

hi newbie

Hello there, I am a 29/f from Ca. I got dxed in 2009 and yea this stuff SUCKS! I was 26 and smack in the middle of my prime too. I wish I had had kids before the dx but now who knows what my life is going to become. Single and watching everyone around me having babies is EXTREMELY hard on me, my role as a woman is unfulfilled so far, its pretty depressing. I am a beautiful woman with much potential, who loves to ride dirt bikes, go hiking and play my piano. It really doesnt seem fair at all. I have cried many nights (and still do) about the hand I have been dealt.


I am fighting this thing holistically which I am fortunate to be able to do, its not been easy at all tho. I have really bad hopeless days. I hope to always be able to ride a dirtbike..although I am super skinny and frail right now due to my strict diet. Ill keep saying my prayers that a man will come along who loves me enuff to work with me thru this thing.

Know you are not alone. I believe autoimmune disease is a lot more prevalent then we all realize. Most people I think just dont talk about it, arent aware of it, or choose to ignore it.

[choklitdiva1]

SAME HERE....

I WAS DIAGNOSED IN 2008 AND OPTIC NEURITIS WAS MY FIRST SYMPTOM TOO. AFTER I STARTED THE MEDS, THE NUMBING AND TINGLING WORSENED. I WAS DEPRESSED AND THOUGHT HOW COULD THIS HAPPEN TO ME. I STILL AM DEPRESSED 4YRS LATER. I'VE AN INDEPENDENT PERSONALITY SO MS DOESN'T MIX WELL WITH ME... I LIVE IN FLORIDA AND AM 32 YRS OLD.

[pnowsitall]

Life after the Diagnosis

Hi Everyone,

It's really sweet to finally hear back from a post. I never really have ever done this kind of thing separate from discussing about our disease, and have to say it does feel supportive.

So it seems the optic neuritis is prety common. I know that the Osbourne son just also got diagnosed with MS and had the optic neuritis as well, which is interesting. I'm sure his dad had some influence :-) Anyway, he mentioned that he did have some signs before his neuritis, like have numb feet, legs, etc. Did anyone here have anything happen to them prior to the neuritis? I do remember my left knee getting numb at the same time as the neuritis pain in my right eye. It lasted actually longer than the neuritis, and I just thought it was from my motorcycle. It's funny that my primary Dr. said that it was my sinuses and motorcycle that gave me the eye pain and numb knee. I only decided to go to the opthamologist and he saw the inflammation and referred me to a neuro-opth.

Oh brother its hard to type all of this and not think about what LammyCat said. I feel what you are going through, as I am in the same predicament. I have been married for 6 years, and now that I have been diagnosed, it seems like my wife wants to do bigger and better things. I also believe in the holistic medicine, and there are some things that she doesn't like, but its the truth that it helps. One thing is that we are not damaged goods. It sounds like you are a very fun person, riding dirt bikes, and just don't stop that. I feel like my life has just begun with this diagnosis, as I just graduated with my MBA from Fordham University, so how could this stop me???????

LammyCat, let me know if you ever stop by NY. I have been thinking of moving to CA or CO because of this whole ordeal. Its all about networking!!

Phil

[pnowsitall]

Where is everyone?

Aww I was really looking for a reply, and that this blog is going.

Anyone out there?

[ChristieAnn67]

Hello

I am sorry, don't live in your area, but just wanted to let ya know that you have alot of support right here from all types.

I'm a limbo lander myself, no diagnosis yet, but no rule out yet either. That is frustrating as well in its own way. But wanted to offer a big cyber (hug) and say you've come to a great place for info, and support. Good luck on your journey!!!

[pnowsitall]

How does everyone feel? Does anyone have a new purpose?

Hey there everyone. I have been posting a lot lately because this is fairly new to me. There is great info on this site, and it looks like everyone is down to earth and nice.

So how is everyone doing today? I'm feeling kind of ok, kind of down at work. See no one knows that I have the disease at work, and I have noticed that I have been to myself lately. Not happy with the job, the roles and responsibilities, and the fact of my diagnosis. I've been here for over 4 years, and no promotion. It seems like a dead end road, even getting an MBA two months ago, it seems like there is a new purpose.

So my question out to the MS World is, do you feel like you have been given a new purpose in life? Doesn't this diagnosis give you hope and something to look forward to? I don't have too many symptoms now, so I am lucky with that, but I am almost ready to change careers and become a hardcore researcher for the society. It seems that all we have to focus on is our health. Of course we have families, etc, but every person is different- and is in a different stage.

Id like to call out to anyone out there that has this drive. I want to research how ms could be affected by marijuana. It is a debatable, political, and emotional topic at hand, but I feel that there will be a cure eventually. I would love to have to chance to educate and help people in this community to feel better, to take something that will enhance their lives, and I feel I have a passion for this.

If there is anyone out there that could provide information about this? Anyone in the society, community? I would be willing to have a company, whatever it is, for me to partake in this everyday, and do whatever MRI's on me, because that is how much I believe in this plant. SO, ANY drug companies, entreapeneurs looking for the next cure, anyone, I would be willing to succumb to any tests, however long, to try to find the evidence that this helps us with MS.

[unsureofanything]

marijuana, hope, purpose

hello

sciencedaily.com has articles on marijuana and MS. from my limited read of the subject, so far trials have seen it provide some relief for neuropathic pain but it does not appear to alter the course of the disease. in the meantime i try vegan cocoa anyway. why not even if it is no help it doesnt seem to hurt me and i feel emotionally better for it?

uhm ok as for the new purpose in life. i guess it depends on what life was like before. for me life wasn't good before anyway. so this is just another kick in the pants (More ****, thanks Richard Pryor) after many attempts to improve things. that is quite depressing. on the other hand it has forced me to reflect on how i handled things before and i've realised that i can't do things the same way i used to and it probably was unrealistic to do things that way anyway (2020 hindsight with a free set of phosphene, lol).

so in some ways i am looking forward to what the alternatives are. but at the moment i don't know what the alternatives are and am in limbo land with my dx anyway (it's probably MS though) and am feeling overwhelmed. but i take hope from knowing that there are old codgers on this site with this dreaded curse and they seem to be out and about living life so that gives me hope. so i hope i can at least keep my vision and my hands so i can paint although that seems to be going. and i hope i can tell storys, but my speech is impaired, thankfully i can still type so hello maybe i'm going to be a blogger. thanks for listening.

does that answer your question?

[Mable]

Hi Pnowsitall,

It's funny, I was feeling really down last night about all the things that have changed in my life. All the things I have lost. But the more I tried to dig into that hole, the less successful I was. I valued different things before my Dx, and some times were really fun. But my life is actually kind of richer today. My relationships are all better, my living situation is better, I'm taking much better care of myself physically. MS is no blessing, but so far my life isn't worse.

When I got diagnosed, I obsessed on reading and learning everything about it. I would have loved to drop everything and become a neurologist! And in fact, I'm flirting with getting my PhD now, but in something more in line with my current degrees... I don't know. I'm already 50.

Anyway, I want to share with you some of the things I found to get up to speed on the disease if you're interested:

* There's a multiple sclerosis blog out of Barts and the London that posts several times a day about current research into MS. It publishes posts from the top clinician and a couple researchers (Mouse Doctors) at their institute. They've done trials on marijuana, and you might find their posts on that very interesting. They've also been involved in other trials that are talked about a lot.

* If you want to dip your toe in the water a bit, there's a site called Projects in Knowledge that everyone from nurses to neurologists use for continuing education. They have everything from a full-blown text book on MS to "Grand Rounds" where you look at MRIs with a top MS researchers or clinician and hear about how they make treatment and prognosis decisions.

* As I read this stuff, I realize I'm not knowledgeable enough to follow everything. Currently, I'm taking a free online course through Coursera on genetics. I'm also signed up for some neurology courses coming up. It's helping me understand what a lot of the jargon means in the research papers I see.

I can't remember what the guidelines are for posting links, so I'll leave it to you to find all these resources with a little searching.