My Diagnosis and Story So Far

By bethany94

4 min read

Hey!

I'm completely new to this! Many years I've read blogs and forums for many many things and I've always envied the people behind stories, but parts of me think, "How can these people want to share their stories so openly?" But now I understand why, and I am now indeed one of those people who thinks, "Right! Get your story heard because if you don't open up, you'll blow up!"

So here goes...

Me in a nutshell

I'm 24, and a mother to 3 beautiful boys – my eldest is 6, my middle boy is 2, and my baby just 5 months old! I have a wonderful partner Andy and an incredible family! I lived a wonderful normal life full of ups, downs... everything a normal young mum goes through!

I've always worked in the healthcare sector, dipping my toes in many jobs within the NHS and I adored my latest job as a laboratory tech at a wonderful major trauma hospital planning to start my biomedical scientist degree!

So that's me in a nutshell. Here goes...

Intense pins and needles

We went to a brilliant Halloween day out as a family. I've always been so festive and loved all the run up through autumn to Christmas and it's always been so important to me to make these occasions special for my boys! We had a brilliant day, but I remember it being extremely cold! When we got home I had the most intense pins and needles in my feet but I put it down to the weather! As the days went on the numbness rose into my knees and into my thighs! So I thought maybe it's time to get it checked out at my local a&e.

Guillain Barre syndrome

Whilst I was there it was clear to the doctor examining me my legs were significantly weak and I needed to be admitted for further tests!

It was all such a rush and as the day went on the numbness was spreading higher and higher! Within hours I could no longer walk! Straight away the neurologist presumed a condition called Guillain Barre syndrome, an illness that usually stems from a recent bug or infection! I had a lumbar puncture and it came back confirming GBS. My oxygen levels started to drop and my heart rate started to race! I was sent straight to the intensive care unit in preparation for intubation! But thankfully my symptoms stopped there! They didn't get worse or better! And this led the Drs to second guess GBS! My reflexes were heightened rather than being non existent! But without another diagnosis the Drs proceeded to treat me for GBS with a treatment called immunoglobulins!

MRI time

After 5 days in the intensive care unit, they decided it was time for an MRI! What an awful experience! Laying for 45 minutes on my back on a hard board with a pounding headache, unable to move with loud bangings all around me!

An hour after I arrived back onto the unit, they came to tell me I could now go to a general ward and I thought BRILLIANT!!! I was so excited and although the wonderful nurses on ICU allowed my children to visit I could not wait to go to a general ward and think about going home!

But that's when my world came crashing down.

Something wrong with my brain

The following morning on the stroke ward, the stroke consultant came to see me. I asked him about my MRI results and his exact words were, "You don't have a brain tumor, and you haven't had a stroke. You don't have GBS, but there are changes to your brain." I was so so terrified as he stopped there and told me no more, as he said it wasn't his speciality and the neurologist would see me shortly!

I entered the ward thinking, "BRILLIANT I can start to think about going home," and woke up the following morning to the news I had something wrong with my brain!!! My emotions were everywhere!

Bad news

But thankfully, the neurologist came within the hour and was followed into the room by a fellow doctor and a nurse. I knew instantly... it's bad news.

The rest is a blur... except for the words, "I'm sorry, but you have highly active, relapsing and remitting MS. You have multiple lesions on your brain and a lesion in your thoracic spine."

Heartbroken

I could not believe it. My world spun for a moment and I didn't know what to say, what to ask? Who to call?!

A few physiotherapy visits and I was allowed home... But I left in a wheelchair, and arrived to a home that wasn't my home anymore in the sense my once cozy living room had a huge hospital bed sitting in there, a commode, a stand aid. I was heartbroken.

And I still am.

Grieving for the old me

I'm not sure where I'm going with my MS future, but so far I've found it so hard to find out any positives.

I'm 24 and currently in a wheelchair. This isn't the life I wanted. I want to run around with my children. I want to walk down the aisle with my partner. I want to walk down the beach when I retire.

But I guess MS is just that... A life of uncertainty. An absolute d%*k of a disease that makes me want to scream on a daily basis.

And most of all, I'm grieving for the old me. My old relationship. The way I used to "mum."

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rolly Member
Hi Bethany94, and thanks so much for reaching out in this forum and sharing your story! You said at the beginning: "If you don't open up, you'll blow up", and that is so true! It's very difficult to talk to family and friends about what we're going through with this fricking disease, as it's almost impossible for them to understand. But in a forum like this, everyone can relate in one way or another, because all of us have gone or are going through a similar experience. True, MS comes in thousands of different shapes, but although everyone's experience is different, there will always be certain experiences that others will share with you. You put your experience of your diagnosis in words very well, and I can very much relate to that, although my story was different, with only a tentative diagnosis at the beginning, and a definite one almost 10 years later. I've lived with this disease for 23 years now, making my first encounters with it when I was 27, a similar age as you are now. Fast forward 23 years, and I'm in a power wheelchair with no use of my legs or my left side, and limited use of my right hand. Yes, this is not the life I wanted, but as you rightly said: "MS means a life of uncertainty". It also means adapting. I'm not writing this in order to frighten you. I know that my case, with a rapidly progressing secondary type, is rather the exception than the norm. I'm writing this to tell you that even if there will be days that will totally suck, there will always be good days as well. You will have to learn to appreciate them. I know there is a mourning process for your old self, but try not to compare your present self to your old self, as then it will always make you feel bad. I have a sensational wife, who is taking great care of me. Of course we didn't expect when we said our vows that she would one day have to become my carer, rather than just my partner, but I'm so thankful to have her by my side. Try to stay positive. That is so important! There are so many more treatments available out there than there were 20 years ago. There is no miracle cure (yet), but your chances are better than mine were all those years ago. Yes, you may presently be in a wheelchair, but there is no reason why you cannot run around with your children (OK, maybe not as fast as before), walk down the aisle with your partner, or down the beach when you retire. You may not be back on your feet immediately, but you have to believe that you will eventually. Take one step at a time - literally. And if it doesn't happen, then you will have to learn to adapt. You have your family to support you and help you on this journey. It won't always be easygoing, and you can expect there to be setbacks. But don't let those discourage you. True, MS sucks. I won't deny that. And a life with MS will always seem like you have drawn the short straw, compared to a life without. But you are still lucky. You're saying that you have a wonderful partner and an incredible family. They can help you through this. Wishing you all the best on this journey!
f5hwo4 Member
I am so sorry this has happened to you so suddenly and at the stage of your life with young children. I was older when I was diagnosed and knew my husband had been planning to retire in ten years. Soon many of his friends were taking early retirement and we were afraid he wouldn't get to retire ever. Ten years later he retired but he isn't getting to spend time with his friends. They have all succumbed to bad health and don't care to get out and about. I realized then that life happens, I didn't ruin his retirement life did. I hope they can try a agressive DMT on you to help you regain some of your mobility. What ever you do keep pushing the neuro for some results. Potter
Devin Garlit Moderator
Thanks so much for sharing Bethany94! I was nearly diagnosed with Guillain Barre syndrome as well, despite having family members with MS. That was a long time ago though so I'm surprised to hear of someone else having that same experience!
kerste Member
Hi , dont dispair I too am knew to this annoying disease and believe me it will get better than it is now , allow your self time to recover (even with 3 little kiddies). Your lesions/inflammation will continue to calm and your brain nerve pathways will adapt .Take all the help offered . I too am waiting for dmd scheduled for in the new yr. Life will move forward again . Please talk to your ms nurse (although not always as accessible as we would like at times). All the best