Forum

New diagnosis and need some help with definitions

Hi all

i just got my diagnosis through. A bit concerned about a few things such as the damage done in the 14 months since my first MRI. I am 47 years old.

Also what is a relapse? Is it something substantial like struggling to walk for a day? That’s what made me go to the doctor 20 months ago. Since October last year I have been tired most of the time, along with slight numbness, sharp little pains in my skull which come and go, aching hands and feet and a constantly sore neck. I have had a couple of two Week periods when I have felt fine. I go to the doctors and they do nothing. They don’t seem to know what to do or say and I get no guidance as to what type of MS I may have let alone is it ok for me to keep riding motorbikes.

I have control over everything, so no problems operating the controls.

i decided to learn guitar to excercise my Brain and coach fine control of my fingers and when I feel good I can play much better than when I am experiencing the above mild symptoms.

thank you for your advice,

Hi,

I’m a fellow biker also and have MS, sometimes I struggle operating the foot brake if I’m having a bad time of it but 90% of the time I’m good! I’m a member of a biker group on FB called ‘Bikers with MS’, it has been really helpful and insightful seeing how others cope with their love of riding and ms.

A relapse can be a sudden or gradual worsening or completely new symptoms, this will be followed by a period of total or partial remission. I have just been on a course of steroids last week to bring me out of a relapse, my symptoms had gradually intensified since September; drop foot, fatigue, weak arm, wet sensations, leg pain, bowel urgency, reduced walking distance, permanent limp, dizziness, blurred vision, brain fog…I can go on with that list and I was feeling rock bottom as my driving and EVERY aspect of my life was affected. The steroids have started to bring me out of that relapse and I can walk further, virtually no fatigue, foot drop reduced, no leg pain, I have at about 5 minutes warning with bowel movements now and I can operate my car and bike safely again, phew!!

Anyway, do you have an ms nurse? If not, demand one, you are entitled and should be automatic following a dx (diagnosis) and you will benefit from their support.

Neurologist…I’d recommend getting referred to an MS specialist neurologist.

When I was diagnosed (June 2015), I was literally told I had MS by the neuro and sent on my way, no support or after care offered at all and its a life changing diagnosis! I had to seek out my own ms nurse who immediately recommended changing to an ms specialist neuro. It was the best thing I could have done as I’m about to start on my first DMD (disease modifying drug) and have had a thorough examination/medical report completed.

Back to the fun stuff…what do you ride? I ride a Harley Davidson 883xl sportster and I love it :slight_smile:

Nikki

Hi

thank you for the reply and reassurance I can still ride. Am booked for 3 days on track at Brno in the summer. Don’t want to miss that. I ride an 04 Ducati 749R. It’s pretty much track only. Also a K1300S on the road with my better half.

I don’t have any major symptoms, just “background static”. I can think of one occasion of think I better get to the toilet quick. I don’t feel exhausted, just slightly tired all the time and wondered if this was normal or part of a relapse. It’s been going on for months bar a few weeks where it lifts. Also, my brain doesn’t seem as sharp as it usually is and again that lifts now and then. The last time was right after I took some anti biotics for a urinary tract infection.

My evoked potential text came back all clear for my eyesight.

Thank you and stay rubber side down

Hi

thank you for the reply and reassurance I can still ride. Am booked for 3 days on track at Brno in the summer. Don’t want to miss that. I ride an 04 Ducati 749R. It’s pretty much track only. Also a K1300S on the road with my better half.

I don’t have any major symptoms, just “background static”. Like pulsing eyelid, very, very slight numbness, I can think of one occasion of thought I better get to the toilet quick for my bowels. More frequent for my bladder. These are no big deal though.I don’t feel exhausted, just slightly tired all the time and wondered if this was normal or part of a relapse. It’s been going on for months bar a few weeks where it lifts. Also, my brain doesn’t seem as sharp as it usually is and again that lifts now and then. The last time was right after I took some anti biotics for a urinary tract infection.

My evoked potential text came back all clear for my eyesight.

My main question are my symptoms common for rel/remit or something else?

Thank you Nikki and stay rubber side down

Forgot to say that I have a Neuro and had 2 MRIs that showed small progression and some repair. One lesion on the spinal cortex showed no change. One on the right side improved. Two new very small ones at the front showed on the second scan… So 4 lesions in total. They were 6 months apart. Spinal tap came back confirming MS.

am waiting on appointment with an MS nurse and to be put on DMDs.

i am hoping the mild fatigue is due to the effects of demylination, and not a relapse.

Hi,

I’d love to do a track day! Get my knee down, out of practice on sports bikes though! My brain isn’t as sharp for sure, sometimes I struggle with finding words and keeping track of conversation, incredibly frustrating! Theres feeling tired, then theres feeling fatigued. Having just taken a course of steroids my brain feels clearer and I don’t have the fatigue I did before, I was in a relapse but wasn’t sure until I had the steroids.

An infection exacerbates MS symptoms and can sometimes bring on a relapse for which a course os steroids will usually kick into touch.

You haven’t said whether you have an MS nurse or not…I cannot stress enough how important they are for support and if you have one use them.

Beautiful day for biking…get out there :slight_smile:

Nikki

Not got an MS nurse yet. Only got the diagnosis late last week. Have just moved to London from Scotland so everything has been done in Glasgow so far. I will see if there are any centres like Glasgows Revive here

Hi, it usually takes a few weeks for the ms nurse to contact you following a diagnosis in the meantime be kind to yourself and let the diagnosis sink in.

Hope you have a good support network around you.

I’m personally still riding the post diagnosis roller coaster 7 months later and still waiting to start DMDs due to a crap neuro to start off with.

All the best