Greetings

[Biggums]

Hello people. I've been living with MS since 2006. The early stages were maddening. No doctor seemed to know what was wrong. The could be this or that was frustrating to say the least. Finally in 2008 I got a diagnosis of MS. I have relapsing/ remitting MS. I've discovered your approach and attitude towards dealing with this gift is paramount. I try to focus on the can do's and not the cannots. The latter is more depressing. This is a journey you have to have fortitude to embrace. Til the next post.

[kdali]

Welcome!

[falalalala]

"approach and attitude towards dealing with this gift is paramount"

I couldn't agree with you more.😀

[lbenmaor]

Welcome to our team!😀

Leslie

[Helpmeup]

Hi, and welcome to our group! You are not alone. Many of us have gone through a similar situation with experiencing years of symptoms before finally getting a confirmed diagnosis. I agree with you that approach and attitude are so important in dealing with M.S. 🙂

[Weezie99]

I understand the frustration. It's especially frustrating when you've developed MS past the "normal" age for getting it. I was 45. I kept getting told it couldn't be MS at my age. That went on for several years as my symptoms just got worse.

Finally, someone listened. But I'm still bitter about the whole thing.

[Mollyabigail in reply to Weezie99]

Good Heavens. I was a month past my 60th birthday. Dr. Boster calls it late onset M. S.

[Cwright170994]

I had the same experience with Drs not understanding. I was 18 when I started having simple partial temporal lobe seizures in my sleep. I only knew I had them because they'd wake me up with a horrible sense of deja vous. I'd go and see my GP, asking him to refer me to a neurologist because I knew something was going on up there, but NO!!! I was apparently having panic attacks 🙄 it took me having a bad morning where I had one at my normal waking up time, to my mum taking me to our town's small hospital because she used the NHS Symptom Checker, which came back with "possible transient ischaemic attack. Get to A&E." So we went, and as the triage nurse was doing a pupil reaction test on, I'd had a seizure. That nurse got me an appointment at a bigger hospital the next town over where there were neurologists working in a medical assessment unit. They got me an appointment with a specialist neurologist. He had me do an evoked potential test, then an MRI, and then a lumbar puncture. That got me a CIS diagnosis in September 2014, when I was 19. A year after, I got my clinically definite RRMS and simple partial epilepsy diagnosis. I was 21. I take each day as they come now. I know I have to be so in tune with my body to feel when I'm relapsing. For example, back in 2020, I had the first of my generalised seizures. In 2021 I had the 1st of my status epilepticus events where I was admitted to hospital for 27 days. I got shifted from copaxone to ocrevus because my MS is apparently aggressive. I do laugh about it though. I keep telling myself and everyone around me that my immune system is so overpowered that if it can't find any sickness to attack, it goes after my nerves 🤣 for example, my husband caught covid in the tail end of 2022, and was scared of passing it onto me. We'd both had all of our vaccinations, but our roles switched - he couldn't "care" for me because he had no energy, but I took charge and cared for him and him suffering from "man-flu." 🤣 love him really though, I swear!That's how I keep going. Pottering about at home, maybe going out for breakfast when he's at work, watching for any new symptoms.

[Biggums]

Thanks to all. MS is the gift that keeps on giving. I wish all my MS warriors success in their battles. You are not your MS nor does it define you. We find ways to do what we can. Be MS strong to All and never give up. Til the next post.

[Elizt3]

welcome to the group!! Glad you found us👍🏻

[bxrmom]

Welcome to the group, sorry for the reason. Look forward to getting to know you more.

[CatsandCars]

Hello and welcome. 😊

[stepsforNeeC]

Biggums, blessings to you, and we share the same journey!!!! I was officially diagnosed in 2008, saw a ton of doctors who tried to throw Lupus, Fibromyalgia and Degenerative Disease of the Lumbar Spine into the diagnosis circle!!!! Nope, MS RR and on Copaxone 3x’s per week. Peace to you and continue to stay positive. NeeC

[Tazmanian]

Welcome to the group Noone wants to belong to

[carolek572 CommunityAmbassador]

Welcome to the forum, Biggums ! I agree, attitude is everything! I look forward to hearing more from you. In the meantime, you can go to mymsaa.org for a plethora of resources all ‘ms’ related. Keep Smiling, my friend

[Mollyabigail]

Welcome, Biggums!