Just got diagnosed

[Lor301]

Hi, I just got diagnosed with MS this month, which was a total shock.  I'm 25 and feel totally lost about what I should be doing/how to handle this/my future prognosis.  I currently have not told anyone about the dx except for immediate family, and am in the middle of an episode of leg stiffness and foot tingling.  I was prescribed Tecfidera, did fine with the starter week but then on day 6 of the full dose started having severe stomach pain/nausea which continued until day 8 when I couldn't take it any longer and just stopped taking the meds.  I'm expecting to hear from my doctor on Monday to discuss what to do about the Tecfidera.  Just curious if anyone has any helpful insight in terms of really anything: being newly diagnosed, experiences with having MS in your 20s, meds, how to get through the initial side effects.  Feeling a little desperate!  Also, my MRI showed clean brain, and a few lesions on the spine.  I heard thats indicative of a worse future prognosis- not sure if that's true or just someone's really pessimistic outlook. Thanks :)

[Lulu54]

Good question!!


disease modifying drug - DMD
these are the drugs that work on the MS, not to be confused with the drugs that work on the symptoms.

[Lor301]

Thank you :)  What does dmd mean? I'm guessing its not "daunting medication?"  

[karryon55]

I am sorry about your dx but at least now you can deal with things head on. I was diagnosed about 7 months ago & it is a bit of an emotional roller coaster at first but with the right guidance & support, like from this great community, you will find it much easier.

I felt obliged at first to disclose my dx but have since learnt some people you want to tell but others you don't. I have had people who I assumed would except my dx pretty well, but didn't, whilst others have surprised me with their knowledge & understanding. I can only suggest you take your time to make these decisions. I have learnt that there is a lot of misinformation out there & this can often lead to people reacting in strange ways. Try to not take any of this personally rather inform the people who are not clued in with MS of what your MS is about.

Please utilise this community to ask any questions you may have & get the support you may need.

Take Care,

Karry.

[rendean]

That last paragraph should read , too silly or dumb ,to ask.

Oops,
Ren

[rendean]

Hi and welcome to the club no one wants to belong to!  The first year is a wave of roller coaster emotions so anything you feel is normal. We are all here to help you get through this and most of us have done so very successfully and have not given up our "normal" lives!!!

I had  symptoms at the age of 16 but did not get officially diagnosed until 35 years later. I had a successful career , raised 3 kids and lived to tell about it, lol! I am still functioning at a good level despite the long standing symptoms.

Don't forget to reference our Health Pages ,located at the very bottom of this first page. They contain a wealth of information on a variety of subjects. Some are older and need updating but the information is basically solid!!!

And don't forget, NO question is too sill or "dumb" to ask!! That is what we are here for, to answer all those questions running around in your mind right now!!

With best wishes,
Rendean

[calamfred]

I can only say these wonderful people her at mh have given you great advice.

My dh was diagnosed with RRMS almost 4 yrs ago. He had lesions in the brain and cervical spine. He was started on Betaseron, titrated up on it, and luckily has had very few side effects. He has other severe coexisting diseases, which sometimes make things more tricky, so to speak.

I hope you're able to find a dmd that works for you, and agree that the good folks here are an excellent support system. Not only for people with MS but also for those of us who have someone near and dear to us with MS.

Regards,
C

[cramp_n_mystyle]

Speaking of muscle relaxers,I'd like to know more about them.I had an allergic reaction after trying flexil the second time around.I remember trying Skelaxin,but don't remember the results.But I do need a muscle relaxer that I can take during the daytime! I'm currently taking Tizanidine at bedtime to help me sleep due to RLS.But during the daytime,I sometimes get cramps in my toes that will nearly make me scream!

[anon07072023]

They first tried Skelaxin and that didn't help at all. Skelaxin is for sure a muscle relaxer. Baclofen is a muscle relaxer but it's more of an anti-spastic one. Baclofen works the best by far for me. They usually start you out low and then, if they need to, they'll work you up to a higher dose. I started at 10mg 2 times a day. Now I'm at 20 mg 3 to 4 times a day (just about the max dose that you can take orally). I can still drive. I'm fatigued but I was fatigued before I started it - MS causes fatigue.  

[Lor301]

Everyone has been so welcoming.  Thank you for commenting.  Kelly, my doctor mentioned possibly prescribing a muscle relaxer- is that what Baclofen is?  My main concern with muscle relaxers is that I need to be able to drive and I wasn't sure if that would impact my ability to.  Guitar, it's always reassuring to hear when other people are still totally mobile, so thank you for sharing your experience with me :) Today I started back on the Tecfidera so we will see how that goes.  The dr is starting me much slower this time, only 120mg once a day for 2 weeks.

[JaneK1975]

Please know that you are not alone!  I was diagnosed at 36, but quickly realized I had it in my twenties and just never realized what it was. The truth about MS is that the disease is so variable there is no way to apply the average statistics to any one individual's prognosis. That is just a fact of statistics, so the truth is that your future is totally uncertain. Most likely, you can at least look forward to a remission soon so you will have a reprieve while you deal with your emotions. And you will also have the wonderful people in this for to support you as you work through everything. I will be sending you positive thoughts.

Best,
Jane

[Guitar_grrrl]

Sorry you've gotten this MeSsy diagnosis!  I was diagnosed 5 years ago after 25+ years of weird symptoms.  I'm 55, now, still on my feet (OK, with a stick, too), still cycling, still working, still doing Yoga.

Expect a whole range of emotion as you get to "acceptance".  The nice thing about this place is, we all "get it", and we support each other as we can.
Big Hugs to you.

[anon07072023]

Hi, and welcome to the forum. My presenting/initial lesions were in my spine as well. I had severe tightness/spasticity in my left hamstring, intermittent urinary incontinence, & numb tingling left foot. However, after I went to a specialized MS center at a University, they said I also had lesions in my brain that they had missed seeing on my brain MRI.

For me, since the onset, my symptoms have not gone away – they’ve only become worse. And I don’t get flares – mine is a constant. I take Baclofen for spasticity in my muscles – mostly my legs, pelvic floor, feet, etc. Baclofen might help you with your stiffness. And I have many other symptoms now besides my initial presenting symptoms. Good luck with everything and hope you get some good answers & help.

-Kelly

[HVAC]

I called the National MS Society. I was totally lost. They sent me a lot of good material.

You go through a stream of emotions the first year including if it is really true that I have MS.

You are not alone, we are here all the time.

Alex

[LoveMyBostons]

I was 28 when I was diagnosed. I'm 33 now and to tell you the truth, my MS hasn't affected my daily life that much. I get more tired than the people around me, but it doesn't really keep me from doing things I want/need to do.

My biggest worry was if I could keep working and support myself. I'm happy to say that I still work full-time with no plans to stop anytime soon.

I've been on Tecfidera for 10  months now and I love it! I'm sorry you're having problems. I hope they just put you back on the 120 dosage for another 1 or 2 weeks. I hope you stick with it because I do think it's a great med!

As far as coping, you have every right to be angry/sad/scared/confused/mad/whatever. You're only human and you can "grieve" for a while. Just please don't let yourself wallow in it. Educate yourself, find a support group online or in your city, and be kind to yourself when your symptoms get the better of you & you have to slow down.

[Lor301]

Thanks for the laugh ;)  This community seems warm and welcoming and my grammar isn't great so I will be the last to judge!

[Lulu54]

those typos grab me quite often, especially late at night.  You are along for this ride but you are definitely not alone!!

[PastorDan]

Hi, Lauren.  I'm 57 and still chasing a dx after more than 5 years, so relating to your specifics might stretch me a bit, but I think we all need a stretch now and then.

I will ditto LauraLu's comments, except I will caution to watch ALL OF US for typos; we're all too human sometimes.  I am sure she meant to close with "You're not ALONE.". ;-D

Welcome.  Prayers for you and yours, and peace to all.

[Lor301]

Hi Laura,

Thank you so much for your welcome and your response.  It was so nice checking in on here and seeing someone wrote.  I will be sure to keep researching MS to learn as much as I can.  I also have an appointment with an MS specialist in a few weeks for a second opinion.  I was diagnosed literally one week after seeing a neurologist for the first time and a hectic 3 days of testing, which seems insane after reading some peoples' stories on here about it taking years for a dx.  Part of me still is hoping there's some mistake and I have a pinched nerve, despite all the test results and symptoms. :)

-Lauren

[Lulu54]

Hi Lori, I'm not in my 20's but can sure understand your concerns - learning you have a chronic disease, particularly MS, is life altering.

You've become a member of a not so exclusive club- there are way too many people diagnosed every day with MS.  The first thing any of us would suggest you do is take a deep breath - living with MS is doable but in the initial days and months it is hard to make sense of the news.

Learn all you can about MS, but do it slowly. There is a lot of information out there about MS, and not all of it is reputable.  Be sure you are learning from trusted sites such as the National MS Society.  

Keep your diagnosis to yourself as long as you want - it is your health and no one else's - but know that others may want to help you with this journey.  Then again, once the news is out, be prepared for almost everyone having a story about someone they know who knows someone with MS .....

Talk to your doctor about any concerns - they should be willing to get you through this early diagnosis by being available to answer your questions.

I'm sorry the tecfidera is not going well for you - don't be surprised if they want you to taper back a bit and keep trying it for a while longer.  but then again, your neuro might surprise me and make a switch immediately.  There are 9 other approved drugs available right now and you can try something else if you can't tolerate the Tecfidera.

Don't assume you will have the worst case scenario with your spinal lesions - especially since you are taking one of the disease modifying drugs. Getting on a treatment and staying on one (even if you are switching) is the best proactive thing you can do.

Welcome again to the club no one wants to belong to- it stinks you have MS but I'm glad you found this group.  It gets very quiet on the weekend, but you can expect to hear from others toward Sunday night.
  
you're not along, Laura