Hi all,
My husband was last week told he has MS. He’s 35, has no obvious symptoms apart from maybe tiredness, keeps really fit, eats well etc and by chance had an MRI because of his hands going white and numb in the cold (raynauds), and we received this bombshell. He was informed it’ll be one that comes and goes and it has been caught very early so in a good prognosis group. That’s obviously positive but it’s still a shock and feels very uncertain. We have today been told he won’t get to see a specialist to talk it all through and find out more about the next steps until…October. I know this must be down to covid but this feels very frustrating and stressful. No one has really told us anything. Did anyone have similar situation and do you think it means it’s not something to feel too worried about if they are letting him wait this long? Anyone else been diagnosed with no obvious symptoms? I appreciate he is very lucky but still feels unpredictable and scary.
The “wonderful” part of MS is that it frequently takes years and years before it really affects your life. i’m going to assume that they diagnosed RRMS (Relapsing-Remitting MS)? That’s the variation that most people get, and it tends to move slowly.
If you’re in England or Canada, it does take a while to get to a specialist, but I wouldn’t worry about that unless he suddenly develops new symptoms. When you meet with a neurologist, he’ll discuss treatment options with you. None of them are particularly nice to deal with, but they’ve been proven to reduce future problems.
There are many of us on here who had MS for decades before it started negatively affecting our lives, so focus on what your husband can do now rather than what might possibly perhaps maybe happen in the future.
I don’t know if it helps you, but the same thing happened to me. I was diagnosed early this year (Jan) & could not get into a Neurologist until May. More frustrating, is that the Neurologist I saw in May wanted me back in 2 weeks & I can’t see him until July 19.
I had to seek out another Neurologist that was more available, and finally started treatment with MS meds only yesterday, July 1st.
I am so very sorry you are in limbo. I TRULY get it. I was frustrated and scared & did not know about groups like this where I could read about others experiences for support.
I’m not sure if, like you said, the Neurologists are backlogged for New Patient appointments due to Covid, or that’s just the way it is with Specialists, but I do know it is very important to treat MS early, so stay on them.
I also don’t know what I would do without the love & support of my husband, so try to stay strong for each other.
I was always my husband’s rock, now he is mine.
Albeit frustrating & unfair, we made it through the limbo and so will you.
Hugs,
Lovey from Texas