Hi

[Jesmcd2]

Hi like most of you lm new here and new to MS. Was told last yr that l had it. I'm 50 yrs old and guess l hit the cut off. I don't know. I don't know about you all but l find myself angry and just want my happy back, if that makes any sense at all.

[Smurfsmom]

I got diagnosed at age 47. I feel the same as you, I can no loner enjoy long rides on the Harley along the coast because the heat makes it impossible. My vision is shot from optic neurotics and I have no energy at all. (I won't even talk about my memory and problem solving problems) My neurologist said I probably had it 5-7 years before being diagnosed. I want my happy body back too!

[Jesmcd2 CommunityAmbassador in reply to Smurfsmom]

I'm having a hard time with the heat this summer. The hotter it gets the more my vertigo acts up. One of things l love doing is just being outside and l find myself being inside more and more. And l know winter is coming and it won't be an option anymore..

[TanyaLWelch69 in reply to Smurfsmom]

12 years ago 5 CT scan's were neg. 5 specialits were sure ms.One was a social security Dr. who has me promise I'd see a neurologist as he was certain I likely had ms. I've found in research CT scans can miss it. I have gone into a serious crisis. I'm being tested in every way for anything pissible. MS is the suspect once again. MRI in morning.

I'm 47 as well. My body feels like it's almost dead, my vision, memory, clear thinking.

I'm a dancer and backpacker. Nice when so much loss of limbs.

[daHumoon in reply to TanyaLWelch69]

I am 64 my diagnosis process was hell! I was told in early 30's it is depression, my vision and unknown degenerativr neuro disease!!! I was repeatedly sent to mental health, they took an interest and assisted in my navigation of the system (thank God!!). It ms has now been showing up on mri as well as symptoms and history. I was diagnosed was even told I was embellishing it by a dr who was doing a consult (her credentials 2 weeks out of medical school) at a medicaid clinic!

I am so thankful to know what is wrong and what to do and amdmt that is working!! It was originallt rrms now spms.

A personal hell I went through, insulted, rejected and felt violated,!!!

Once diagnosed a relief and I could move on to another phase of healing and coping of what was really happening. NO I do not like this disease but a relief to have an explanation and a frame of reference!!!

My Mother had this disease and my doctors armchair diagnosed her as hysterical without hving spoken to her or even seen her records. So unprofessional and disgusting.

It is. ow 2016 I no longer need to utilize the mental health system, take the tysabri, get assistance in my home, have my life saving kitties and strive to live as stress free as possible!!! I attribute my life calm and acceptedmby self and others due to these last few comments!!

I know this is long yet hope something is of assistance to u or any reader Hang in there and peace!!!

[Jesmcd2 CommunityAmbassador in reply to daHumoon]

Having a diagnosis finally is something we all strived for l think. It's like we know something is "wrong" but what I'd the question. The 1st dr. I saw told me that everyone has gray matter and l had more cause of my migraines. Then asked if l wanted botox for them. Went for a 2nd opinion and sent to the MS clinic the very next wk. I was blessed to have an answer so quickly. Oh yeah.. told the 1st dr off. Lol

[HSCT2016]

Yes it makes perfect sense....you can get it back with the right treatment. Check out HSCT. It's amazing. It's the closest thing to a cure, stops MS in it's tracks, yet you don't hear much about it from the MS Society which is really disturbing. I had it done 2 months ago and already have major relief. I was walking with a walker and now I'm walking fine and no more incontinence or nausea from vertigo....amazing. It's a stem cell transplant using your own stem cells and chemotherapy. Amazing. I'm here to help educate because the National MS Society apparently won't.

[Pink-1 in reply to HSCT2016]

Can you please tell me more about this treatment.

[HSCT2016 in reply to Pink-1]

Yes! Basically, you are given a dose of chemo to suppress immune system, then you create new stem cells using neupogen injections. They are then removed thru a port in your neck, the blood is circulated thru this machine that collects your stem cells and returns the other parts of the blood back to you. The stem cells are frozen for later transplant a couple weeks later. Then you're admitted for transplant, receive a few days of chemo and stuff and then you get your stem cells back and then your immune system rebuilds. I was in the hospital for 2 weeks during this process sometimes it's longer. But it's like rebooting your immune system. Check out these links and I will include my blog:

hsctstopsms.com/what-is-hsct/

healthline.com/health-news/...

stemcellresearchfacts.org/d...

elliehsct.com

In our county it's only available through clinical trial but hopefully it will be approved by FDA in a few years- more likely several. It's available in other countries. It's not cheap but it's worth every penny.

[Pink-1 in reply to HSCT2016]

Do you mind giving me an idea of the cost and where did you have this done?

[HSCT2016 in reply to Pink-1]

clinicaltrials.gov/ct2/show...

I had it done at Northwestern in the trial above. My insurance covered it but most don't. The private pay rate is $125k. It is less in Mexico and other countries. If I was going to get it out of the country I would check out Singapore or Israel but it's also done in Russia, Italy and Phillipines. If you are on facebook look for Dr. Burt HSCT page and there is a ton of info in the files.

[Pink-1 in reply to HSCT2016]

Many thanks

[TanyaLWelch69 in reply to HSCT2016]

Thank you. I'm awaiting confirmation is likely ms.

I want to live again. Thanks for the hope (:

[Judi4 in reply to TanyaLWelch69]

@TanyaLWelch69 What have the doctors done so far to be able to diagnose you? I've had an MRI and spinal tap and now I'm being sent by my neurologist to the MS specialist at RUSH hospital for my official diagnosis.

[daHumoon in reply to HSCT2016]

Great!!!!

[Fancy1959]

Hi, Jesmcd2, I'M Fancy1959. if you meet someone who has MS and they tell you that they never get angry with the hand life is dealt them, I simply don't believe them. You are not the one who gets angry, sometimes at the whole world, that Ms has descended upon you. But the important thing is to reach out to others like yourself to talk to. And remember in the long run we're very lucky. Yes I said that I feel we are very lucky to have MS because it could be so much worse. I have to tell myself that every single day to remember it is so true. I have lost one sister-in-law to breast cancer just three years after she was diagnosed. And I have lost another sister-in-law to pancreatic cancer less than two years after she was diagnosed. Are we lucky you bet. We have a fighting chance to make a difference in our disease. It takes a lot of heart and a lot of determination but with exercise, physical therapy, and positive attitude we can get through this. After all what choice do we have? I may occasionally let MS get me down but I'll never let it keep me down. I'm just to da**rn stubborn (if you know what I mean) to let that happen. Keep your chin up, redirect your energies, and scream when you need to talk! And most importantly of all, never, never give up or give into MS. Together we are stronger!

[heathera1 in reply to Fancy1959]

Thank you! You have been thru a lot and it's obvious you have the right attitude!

[daHumoon in reply to Fancy1959]

AMEN!!!!!

[Jesmcd2 CommunityAmbassador]

I have always been a fighter. I raised 3 beautiful daughters by myself . Had 2 back surgerys and lost the feeling in both feet. And learned to walk again every time. I'm a fighter and a fixer l want to fix this!ugh very fustrated with the whole thing.

[Hidden]

Hi Jesmcd2. I too was diagnosed at 50. Can trace my symptoms back to my mid forties but was always able to explain them away- the stress of running my own small business, raising two teens, etc. They say when your given a diagnosis like MS you go through the stages of grief ( denial, anger, bargaining, depression, acceptance) mourning your old life. I have only been dealing with MS for 2 years now but have definitely experienced all of these feelings and still do. Just understand that these feelings are normal and there will be good days and bad.

[Jesmcd2 CommunityAmbassador in reply to Hidden]

Definitely good and bad days. And oh so tired of being tired! Would love to hear what ppl do to beat the sleep!

[ynggal]

I don't believe there is a "cut off" when it comes to MS. Sure, there's an average age, but I was diagnosed 2 years ago at the age of 53! My original neurologist, whom I've since relieved of his duties, told me I was too old to have MS. Apparently I had a very benign form of the disease and never even knew it until the trauma of being rear-ended in an automobile accident exacerbated the condition. I was fortunate that 3 months after the accident I had a definite diagnosis. It took 2 MRIs and a spinal tap. I hear of people going for years without a diagnosis and I can't even imagine what that's like. I get the angry part. I think it's only natural to feel that way. I feel angry...a lot! I'm still trying to adjust to my new normal, but I think it'll always be that way because the normal is constantly shifting. You're justified in feeling whatever you're feeling on a given day. But if it becomes overwhelming please talk to someone about it. There are so many resources available to help you feel better emotionally.

[Jesmcd2 CommunityAmbassador in reply to ynggal]

The support and out reach lm finding here is amazing and heartwarming. Thank you. Seemed like no one wanted to talk about the anger, but it really needs to be l think. Sure MS is our new normal and our normal changes every day. Each one of us have to go through this the best we can and together. Thank you

[ynggal in reply to Jesmcd2]

MS is a very isolating disease so I think talking, keeping a diary, etc. can help keep thoughts and feelings in perspective. Talk, talk, talk about it!

[5alive5 in reply to ynggal]

Hi I'm new to this community and i was diagnosed at age 55,

I had a rear end accident @ 50 also

I my back and body was never the same ,I didn't know

about MS then.

This MS is really sneaky thats what my neuro told me

and now 3 more years later I

finally understand what my Dr is talking about...

Somes I feel angry maybe depressed at times but then

I just look up and keep on moving it could

be a lot worse

I see that a positive attitude makes the difference

I may have MS but MS doesn"t have Me

keep SMYELIN ;0)

[Jesmcd2 CommunityAmbassador in reply to 5alive5]

I say that a lot also. I have MS, but MS doest have me. I think my biggest problem is that there is no one to be mad at. If that makes sense. I am oh so thankful that my girls will most likely not get it. That was my very 1st question

[daHumoon in reply to ynggal]

mMy neurologist tells me ms is a young persons disease and sees

me once a year after dx me with spms....

[Jesmcd2 CommunityAmbassador in reply to daHumoon]

No its not l was 50 some are older... l think when it wants you it wants you. Although l feel young at heart most days.

[daHumoon in reply to Jesmcd2]

so do I

[steverudyk]

Anger is a normal reaction. I'm 70 and have lived with this progressive curse for about 35 years. Anger won't solve anything. Take inventory of your abilities every morning when you wake up. Make the best of today and be thankful for it. YOUR HAPPY WON'T COME BACK. Physical therapy may help create a better tomorrow. There are no guarantees ... what works for some, may not help others. You will get more positive responses, but this is my experience speaking.

[Royjr]

I think most of us here felt that way at some time. When I was told at 43 that I have MS, I cried and asked the Almighty "why me". What have I done to deserve this? I can remember to this day what I was told. I was told "why not you". You don't have to wake up tomorrow; you can have a stroke or heart attack; you can be hit by a bus today. Why not you having MS. This is a test on your FAITH. If you believe you'll be just fine. To this day I believe. Of course I have my limitations but I'm alive with a loving family and friends. Would I have this if I wasn't being tested? I don't know but life is good. Keep your head up and you'll be fine. Good luck and keep us informed on your well being..

[Pbargal]

I was diagnosed two years ago this month. Getting my happy back hasn't been easy and I'm not nieve enough to think that I won't have bad days again, but I have finally gotten to my happy place with 40mg Copaxone My Happy is Back...and this summer has been amazing and I'm so thankful to the Lord above.

I still have athropy in my hands and lower arms with some weekness. But the fatigue had lessend. There is hope, faith and state of mind play so much into finding our Happy Place it is out there don't let ms rob you of that. Please don't.

[5alive5]

hi Jesmcd2, I didn't want to belive I had the MS diagnosis but I @ 55...

What.. ??? ...

It was very sneaky and I remember certain little things were wrong

but it wasn't drastic.

When I finally ended up in the Emergency room.

My sypmtoms were like a rubbeband that kept moving and stopping

then one day pulled and then finally broke.

You can get your groove back

keep the faith...

read everything about this MS disease

Its different for everyone

[Jesmcd2 CommunityAmbassador]

Hi Kim I did read your comment and read everyone's that posts to me. They give me a boost and support that l think we all need. Unfortunately l dont use FB sorry and really don't plan on getting it back again but ty

[elaineslife]

I was 51 when diagnosed but had symptoms for years. I was happy to find out what I had. The neurologist looked at my reaction when I sighed and immediately said, "OK, now what do we do to take care of it". As a former care giver the patients I had in the past were in bad shape.

[Jesmcd2 CommunityAmbassador in reply to elaineslife]

It's funny how we all react differently to the news. My 1st question was" Were my girls or grand babies going to get this?" He told me that it's not haradatry. Then l cried, l had an answer.. then was like, ok now what? Welcome to your new normal world.

[elaineslife]

I think I heard about this from a woman sitting next to me at a seminar, I was skeptical. I will get in touch. Thnx

[daHumoon]

just made a note to do so

tha nks

[itasara]

Not sure there was a cut off. I was 57 when I was diagnosed! I think MS can hit all ages but doesn't rear itself until it does!

[Jesmcd2 CommunityAmbassador in reply to itasara]

I'm beginning to relize this. Being in this chat has opened my eyes to so many things. And l have learned so much! The ppl here are wonderful and l consider everyone a friend and l find so much support. And we ALL need that on this roller coaster ride!