New member looking for advice

New diagnosis and before diagnosis
1

Hello im new on here so will tell you my story.

Sept 2010 (25 years old) i fell ill with flu like symptoms which lasted almost 2 weeks. I started to feel on the mend then woke up one morning and noticed i was speaking funny, some words didnt come out. Went to put my face cream on and my face felt tingly, i smiled in mirror and noticed the right side of my face wasnt moving. Went to Gmeds as was a Sunday, and i was sent to hospital and admitted. I spent a week in hospital and had several blood tests, a chest xray, MRI scan and lumbar puncture. MRI showed several lesions on my brain and lumbar puncture showed oligoclonal bands. A few months after leaving hospital i had an evoked potential which was clear. My facial weakness slowly recovered over a couple of months without steriods. I had a 6 month review appointment with the Neurologist who diagnosed me with a Clinically Isolated Syndrome. He said i had a 50% chance of developing MS over the next 5 years and after that the percentage would not disappear but would probably reduce.

Its been 3 years and 7 months now and i have not had any other attack since. Although i have had several urine infections, night sweats, eye twitching, leg cramps, fatigue and gastro problems which from looking online i see alot of people with MS suffer from. But i know alot of other people suffer from these too. Since the Neurologist gave me the 5 year timeline thats what i have been focusing on getting to. I have a daughter whom i had before my attack and i want to have more children but have been putting off doing it because iv basically been thinking something else would happen before i get to 5 years. I keep thinking what if i do get pregnant then after birth i have an attack because i know you are more prone to a relapse after having a baby.

I know people will probably just think i am being silly by worrying about it and not just carrying on with my life and future plans but im scared. I keep thinking if i dont have MS then why do i have oligoclonal bands in my spinal fluid and lesions in my brain? I was wondering if anyone on here has been in same/similar situation and can offer any advice. Also has anyone had similar results to me (MRI and LP). Thanks in advance for replies i really appreciate it x

2

Hi, welcome to the forum.

I hate seeing posts un answered, so although I may not be able to answer your questions, I do want to urge you to see your GP again and tell them about the symptoms you are having now.

I certainly do not think you are being silly to worry about the future… everyone thinks about how their future will turn out…and we all have positive thoughts…but when health issues concern us, we naturally are mentally stopped in our tracks.

Okay maybe not ALL of us think this way, but a lot of us do. So you are not being silly at all.

Have a chat with your GP. I am sure he or she will be interested, especially with your previous health history.

luv Pollx

3

Thanks for your reply, i was wondering if anyone would get back to me : )

I was at my GP yesterday as the Gastro Reflux has started again. My GP is not concerned about any of these symptoms i have had over past 2 years as she says people have these with no illness. I am having bloods done next week to test for Helicobacter pylori. Kinda hoping it comes back positive so i can get some anti-biotics to clear it up.

As you say its the unknown that is scary x

4

Hi there and welcome.

My suggestion is you ask your GP to refer you back to neuro. It would be a good idea to have another MRI to compare to the first one. New lesions can appear which would indicate another episode even if you didnt notice it. In some countries people with CIS are offered DMDs epsecially of their LP was positive. Here you only get them if you have had 2 attacks within 2 years.

Mention to your GP about wanting to be sure before you embark on another pregnamcy.

Take Care

Moyna xxx