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Ignorance is gloominess

My wife was diagnosed last year. The discover happened by accident doing other tests. Doctors say she's lucky because starting the therapy at such an early stage gives her the best chances to have a normal life for long time.

Everything changed during the past months. She started with the drugs, removed unhealthy food, started exercising a lot, and dramatically reduced the working hours to prioritize her health. In all honesty, she has never been so well before and that's fantastic. MS pushed us to change our priorities in life, and we are better people now.

However, despite no visible symptom, MS haunts our house like a ghost. Now having an headache or being tired "may be MS", forgetting the keys or dropping a cup "may be MS", a night of poor sleep "may be MS". Dizziness or pain? "That's definitely MS".

I spent days reading papers about MS trying to find cases similar to hers, but there is no way to make predictions. Not knowing is my hell. I try to rationalize thinking that everyone has a ticking bomb inside: it doesn't make any sense to worry just because you know yours or your spouse's. But, damn, it's so hard.

  1. Hi . My heart goes out to you. MS can be so frustrating. It is forever unpredictable. No one can tell you when or whether it will progress. No one can tell you how challenging the journey will be. It can take a long time to learn how to live with that uncertainty, but it is important to try for your sake and for hers. I have a friend who was diagnosed with MS 20 years ago after a bout with optic neuritis. She has had a few minor symptoms here and there since, but that's it. She is now married with children and is an administrator in a large school district. If she had let that ghost continue intimidating and haunting her, she would not likely have a family or such a fulfilling career. Another friend was a police officer. When her MS progressed and she had to leave the force, she pursued her second dream and became an author. It is a fulfilling career choice that allows her the flexibility she needs. My own father had eight kids and a long law career before MS caught up with him. He lived well into his 80s. It is important to plan ahead (For instance, you might want to eventually buy a house with a main floor master or invest in long-term care insurance), but it is equally important to put MS in the background where it belongs right now and to trust that regular monitoring will help you recognize relapses when or if they happen. Give yourself a little more time, but if you find that the uncertainly is too overwhelming, you might want to thinking about seeing a therapist to help you work it out. Her MS is your MS, too. It impacts your relationship and your future, so it's only natural to be stressed and anxious. I hope you get lots of support from others in the community and that continue to come here when you need that boost or a place to vent. Thinking of you. - Lori (Team Member)

    1. this will be an ongoing need! I've lived for 44 years with MS and its attendant ups and downs, and the one thing that really helped was going on a disease modifying therapy. Even though I didn't start on a DMT until I had lived with the disease for twenty two years (hey I got sick in the dark ages, what can I tell you?!) Hang in there, there are a lot of different ways this can go over the course of a long lifetime lived together. I'm glad you joined our community. I didn't do that until about five years ago, and this community has made a HUGE difference. You are in the right place. Courage my friend, and give your wife a big hug. You two have got this, and while nobody can promise you a clear path ahead, you've got each other. The only thing you don't have is certainty or answers, and who among us, ill or well, has those?

      Alll the best, Therry, a MultipleSclerosis.Net Team Member

    2. you're right. Nobody knows what's coming and it does not make sense to worry just because a diagnosis gave us an hint. Stay strong!

  2. @ sostogegni - you're so lucky that you were able to get diagnosed and start on a DMT. I had symptoms starting in my 20s, went to many doctors and I was either diagnosed wrong or undiagnosed. It wasn't until I was almost 60 that a neurologist sent me for a MRI. He found that I had MS, I was shocked. Later, I told my last remaining aunt that I had MS! She has a couple of children with MS and said I had cousins with MS. My parents had taken that secret to their graves. I was extremely angry that I was not told because I could have started on a DMT when I was younger.

    1. Having lived with MS for over forty years since I was 25, my husband and I never let MS or anything else (e.g. Covid) hold us back. We have travelled extensively and have done incredible things. Although my own case of MS caused me to begin using a wheelchair twenty years ago, I am 95% independent. Just yesterday, I drove myself to visit my parents. Our adventures even included a ride in a hot-air balloon! As long as we took all necessary precautions, we went for it. In our early years of marriage, we lost family members and friends to unexpected things. Our thoughts were that anything could happen to anyone at anytime. I've learned that MS is very manageable, especially nowadays with so much research happening and treatments available. So, my personal thoughts are to take precautions to protect yourselves against viruses and infections, and go for it! And let your wife follow her gut instincts. What you don't want is to look back in five years and say, "I wished I would have done that when I had the opportunity. My best wishes to you both! Debbie (Team Member)

    2. - I was fortunate that when I was young, my MS (that I didn't know I had) was manageable. I was able to travel extensively, camped in many different campsites, bowled regularly, walked a lot. I am so glad that I was able to do all this! I would have been devastated if I had had to look back and wished that I had the opportunity to do it.

  3. , I can only echo what others have said. And please know you are welcome to come vent here anytime!

    Generally, the "is this MS?" question may start to ease as your family adjusts to diagnosis. We have lots of articles geared towards the newly diagnosed because pretty much everyone here knows what an overwhelming time it can be for a person and person's loved ones!

    Here's just one that I thought might be helpful for you and your wife --

    It sounds like you guys are doing an AWESOME job of adjusting and communicating openly and I think that's fabulous! Even talking about your feelings here is healthy and normal. It sounds like you and your wife have some very healthy coping skills and you are already utilizing them.

    Please know you are not alone in this journey!

    Best, Erin, Team Member.

    1. thank you! Indeed we are strong together and we approach MS like a team prioritizing her well-being. Sooner of later we will also overcome the shock.

  4. - So sorry to hear about your wife being diagnosed with MS. I had symptoms for decades, but nobody could give me a definite diagnosis. I have had MS for 50 years and was not diagnosed until I was 60 years old. Then, I started on years of monthly Tysbari infusions. It is really good that she was able to start treatment in the very beginning. MS is very frustrating. One doesn't know how the day is going to be until one wakes up because every day is different with MS

    1. we wonder when MS actually started. Doctors said that probably it began 6-12 months before the initial diagnosis. That was a period of intense stress and family grief.
      My wife also recalls having tingling hands five years before the diagnosis. It was another stressful period for her. Doctors say that it's unlikely that MS started so long time ago.
      Either way, we saw a correlation between stress, weird symptoms, and fatigue so she cut her job. It's a sacrifice, but we can afford it. We don't know how much is the contribution of Rebif, cutting fats and dairy from the diet, more rest, more exercise, and less stress, but most of the days she feels better than ever.
      Now we just need new medical exams to confirm it's actually true.

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