Ms diagnosis scared

[Medina89]

I was diagnosed recently i am terrified,Only 23 years old and recently married

All kinds of thougts run now ,but what i want to know is how many people can still walk after many years?I know a wheelchair is not the worst ms can do to you but it scares me ,i hope to be independent as long as possible

[VikingKitty]

Hello Medina89! Welcome to the forum. I know how frightening receiving the diagnosis of MS is!!

MS affects everyone differently throughout the course of their life. My first episode of MS was when I was 28 years old. I had a bout of optic neuritis that lasted 3 months. 3 years later I had another bout of optic neuritis. I had no troubles for approximately 11 years.

In 2009 I had a flare that made half my body go numb. I should have gone to the doctor and gotten a diagnosis at that time. I was too afraid to go to the doctor though. 2 years after that I started having more problems with numbness. My feet were numb for a while.

I did get a diagnosis in 2012 and on medication since 2013. I am currently on Copaxone and was Tecfidera for a couple of years. I am now 51 and still walk fine. My feet are still a little numb. I have trouble with fatigue though but I sometimes wonder if it's not other things like menopause. It's really hard to tell.

I hope that can be of some reassurance to you. But like I said everyone's different. Had I been on medication earlier I might not have had the flare-ups that I had in 2009, 2012 & 2013 - or they might not have been as bad.

[robert152]

My

Wife was diagnosed 18 years ago but feels she had MS long before being diagnosed. On meds since being diagnosed and still walks fine.

[Jules A]

Hi and welcome,
This is terrifying especially at first. Take some time to allow yourself to process it.

I'm blessed to have been diagnosed 13 years ago and am still able to walk. I pray we all have an easy course.

[Ant1981]

Recent diagnosis

Hello and sorry to hear about your dx

i am 37 male and recently dx last sept (2017) I had picked up a nasty flu and I knew something wasn't right so I went into the hospital with stroke like sx like partial numbness in my left face (still numbness) , rigt flank and arm, lower leg (foot, calf, lower thigh) ear ringing, gait disturbance, speech slurring, face drooping, uncoordinated fine motor and gross motor could hardly write and ended up in wheelchair (paralyzed ankle/toes on right side) for a couple days in hospital. Finally the IV steroids (2 infusions) got the flare on my brainstem (pons) to let up after 6 weeks of misery.

I went from wheelchair to walker to cane and lots of PT but now just ran/jogged 40 mins straight (no breaks) and significant weight lifting routine. Do yoga and went back to school to change my occupation as balance has some lingering issues still and I work on scaffolding and in construction, I don't think I can rely on that for income 4 life and I didn't want to anyways.

the initial dx was big anxiety moment and was terrified but I recovered so well my life had resumed.

i too fear the wheelchair and I'm running everyday to control my anxious thoughts but as you read others response most are still walking pretty good and the stat I always remind myself that the vast majority of ppl with ms never rely on a wheelchair, only about %12 according to NMSS. Chances are you will be walking for life but eat extremely well, excersize often as possible, live with low stress and keep living if you have RRMS you should be fine and starting a DMD.

i too have much to learn but I'm 6 months only with MS and learned a lot.

hope this helps.

[Medina89]

Thanks all made me feel a bit easier,i have rrms too and still feel that relaps a bit hope it Will go away Soon (started 2 week ago with extreme balance issues)

[pennstater]

Diagnosed 12 years ago, beuros think symptoms back 25 years, but possibly even 37 years. Still walking unassisted.

The first year after diagnosis is tough, many emotional ups and downs. While never a good time to be diagnosed with MS, there are so many more options for meds to slow progression. Try to control what you can towards a healthy lifestyle and let go of what you can't control.

Welcome. Lots of luck to you.

[ru4cats]

I was diagnosed recently i am terrified,Only 23 years old and recently married

All kinds of thougts run now ,but what i want to know is how many people can still walk after many years?I know a wheelchair is not the worst ms can do to you but it scares me ,i hope to be independent as long as possible

I am incredibly sorry to hear of your diagnosis. When my neurologist told me, I quite literally collapsed into tears. I was 58 and had been retired for only one year. My "Golden Years" suddenly didn't look so golden. The decisions you make in the next few weeks could very well determine your future and whether you end up in a wheelchair or not. Give yourself time to grieve what you think you've lost, and then put on your big girl pants and get to work!

I'm sure you're not ready to accept it, but now is actually a wonderful time to be diagnosed with MS. New medications are making great advances in the treatment of MS, and new ones arrive on the market almost daily. If you need some more time, find a strong advocate who can do the research for you and help guide you to make the right decisions.

First, you need to get on a DMD (disease modifying drug) with a strong efficacy. In the Medication and Treatment forum there is a sticky called "Chart for comparing DMD's". This was recently posted, and it is excellent. The goal is to find a drug with the most stars under efficacy and the most stars under safety that you believe you can live with. The infusions (Tysabri and Ocrevus) would be my recommendation. The goal with MS is to prevent relapses since they cause the damage that led to your diagnosis. These two do the best job. I am on Tysabri, and I hated needles. With close to 100 infusions under my belt, the needle is no longer a concern. Once you find a drug you want more information on, just go to that thread to learn more.

You are young, and so your body still has the ability to heal itself. Mine, not so much. Avoid the injectables like the plague! If your neurologist wants to start here, find a new neurologist! You're going to war, not a birthday party, and you need a good general (neurologist) to lead you. I really lucked out with mine, although she is gone now. She really started me on the right path with Tysabri, and I am forever indebted to her. I have seen young people on Tysabri that you would never know even had MS. It is just crazy!

Look into supplements, especially Vitamin D3. Have your blood tested, and if your are low, start on it right away. My level if 70, whereas most people are at 30. I also take fish oil. Both have been shown to help with MS.

Start learning all you can about MS or have your advocate do some research. I was a librarian in my former life, so for me that was easy. There is a channel on YouTube called TheMSCenter. It is from the Rocky Mountain MS Center in Colorado, and it is a great place to start. The Education Summits and the Webinars have Dr. Vollmer and Dr. Corboy. They have some great presentations on DMD's and brain health, among others. Definitely look at brain health later, once you're on a good drug.

Finally, everyone is here for you. If you need answers, we can give you our perspective. However, you will always need to make the decision that fits your needs the best.

This might be more information than you want at the moment, but I've learned so much about MS in the past 8 years, that I get really pushy when it comes to young people. I've learned how important it is to get moving, and I've seen the results from those that do. Don't wait!

[SNOOPY]

Hi Medina89,

You sound like me when I was diagnosed, I was 23 or 24 (I have had symptoms of MS since I was a kid), had been married for 3 or 4 years... and scared to death. After all these years I am still walking and still married to the same wonderful man.

I strongly recommend that exercise becomes part of your life. My Neurologist told me the best thing I could do is walk (mobility problems was part of the relapse that got me diagnosed). Through the years I have continued to exercise and currently use an Elliptical and weight train.

[robert152]

Ru4cats

Could I ask you to share with us why you feel so strongly about injectables?

Thank you

Bob

[ru4cats]

If you take a look at the chart I mentioned in my post, you will see they have the LEAST efficacy of all the current DMD's on the market. Why would you want to take a drug that is less effective in MS than any of the others? The goal is to prevent more relapses to prevent more damage, allowing a more normal life. Injectables are now considered Tier 4 (least effective with far more side effects) than the oral medications (Tier 2) or the infusions (Tier 1).

[Medina89]

Snnopy your comment made me feel so much better thanks

The doctor wants me to start with a drug you take twice a year,its good for young women who plan pregnancy

[ladybug162]

I am so sorry you were diagnosed with MS. I was diagnosed when I was 29 when I went completely blind in one eye. I think the temporary blindness scared me more than the diagnosis. The not knowing what this was scared me more. I had never in my life had an mri before so that was pretty scary for me too. I just kept thinking oh my gosh this is bad. When I was diagnosed I felt an odd sense of relief.

That was about 6 years ago and I’m still walking fine so far. (Knock on wood). I’ve been on oral medication since a year after my diagnosis. The reason I waited a year was because I was afraid of injecting myself with the medication my doctor initially wanted to put me on. I’m afraid of needles. Silly I know! Then Tecfidera came available, which is what I’m on now and I have had no flares ever since. Thank goodness! And every mri I’ve had since being on the medication had showed no new lesions so I’m happy with that!

It’s understandable that you’re scared. You should be enjoying newlywed life and then you get diagnosed with MS. It’s just not something that’s expected. I would try not to worry about what could or couldn’t happen in the future as that will only cause you extra stress. (Easier said than done I know). Just take care of yourself and keep up with your medication. MS is so unpredictable and affects everyone differently. I pray that you have a fairly easy time with this disease and the best outcome possible.

Oh and this place helps a lot. So many wonderful people here who understand what you’re doing through. So you’re never alone. 😊

[Mamabug]

I am 55. I have had MS for 16 years. I have recently begun using a cane. I could get by without it but it helps me, I don't walk far without tiring.

My advice is to get on a good med soon. It took me 2 years to get diagnosed and 5 more years before I found a new that was effective for me. 7 wasted years while my brain accumulated many lesions that I blame for my current progression.

[Ant1981]

DMD

Doesn't MS progress still while on a DMD ?