After spending the last several months in and out of hospital, losing the sight in my eye for an extended period of time and only partially regaining it, losing all sensation in my right leg and experiencing sensory issues in my arms I was once again told it looked like I had MS. Yet the examinations didn’t agree. I was left battling for help as different hospitals and departments seemed to find it impossible to communicate with each other. Well the most recent test results are in! We finally have an answer.
If I am honest I had almost given up on a diagnosis other than unknown complex neurology condition with global sensory loss. None of my Drs were communicating with each other, no one could agree with each other and that was resulting in me receiving no treatment. It has been a period of high stress and extreme emotion.
Today I finally had my Emergency Video Consultation with the local specialist in Neurology; this was requested back in October. Firstly they are agreed it isn’t MS which is great confirmation. What they are sure of is that is another part of my Ehlers-Danlos Syndrome. Apprerently when I’m dislocating my knees the nerves around it are being over stretched and damaged hence the loss in sensation/function. The same thing had happened to my elbows causing the sensation I was getting in my lower arms and hands. This surprised me greatly; mainly as I had in fact asked the doctors this very question when I was on the ward last year and they laughed at me for suggesting it. In regards to my eyes the nerves are not communicating with my brain effectively, but are not damaged like you get in MS.
He’s suggested we get me booked in with my EDS consultant for some advice in the meantime on how to cope with these symptoms as they can last a significant amount of time.
So whilst the EDS is generally on a slippery slope currently and it’s all about managing it, keeping on top of my pain and being proactive, I feel that overall it was a very positive chat.
After a week long stay I was finally discharged from one of our local hospitals yesterday evening. I was admitted due to pain in my left eye which has optic neuritis, it had become overwhelming, to the point I felt I had to apply pressure on my eye to relieve it. I had also lost the sensation in the bottom half of my right leg.
During my time in the hospital they decided to carry out a Lumbar Puncture and MRI knowing that my neuro team wanted to do these anyway. The LP side effects I’m still dealing with, I am still having issues with my bladder, my whole leg now has no sensation, and I have a permanent horrondous headache. Both tests came back clear which left the dr’s there confused. On discharge I was diagnosed with Complex neurological disorders and global sensory loss in the right leg, and told my neuro team would take over figuring out the cause.
Today I had an Opthalmology appointment at another hospital. The opthamologist in charge of my care is wonderful. I sat down, he faced me and said “So you have MS ” he was quiet matter of fact about it. I corrected him and pointed out that my tests had come back clear. He muttered that they were wrong and went on to examine my eyes. After several tests he sat back looked me in the eyes and again said “Rebecca you have M.S”. He was quite insisted that my doctor’s must have missed something on my scans due to the state my eyes were in.
So where do I go from here? Such wildly different view points, everyone agreeing that my local neurology team needs to see me again and review what the different teams have found. However getting hold of them is darn impossible. Both myself and my gp surgery contacted them a few days before I was admitted informing them I was going downhill, and needed input desperately. Neither myself or my gp’s surgery has had a response yet.
Right now I’m very emotional and very stressed. I’m taking things moment by moment and trying to just accept things as they are and get on with it. But I work best with action plans and right now I don’t even know who’s responsible for my care. I feel very lost in the system.
I’m truly ashamed of how long it’s been since I last posted on here, that one blog post a week goal went out the window! But I’m still here ticking along desperately trying to find a moment in the day to sit down and share with you all where I’m at. The joy of being in my final 9 weeks of university, along with having a 9 month old baby & another book to write however means I really don’t seem to have enough hours in the day anymore and unfortunately regular updates have had to be postponed. I do intended to get back to a weekly format asap.
So what’s going on with me?
My Dystonia alien is being regularly forced into submission thanks to good old Dysport injections. I’m currently exploring how different exercises can be used to help in the management of the condition so please feel free to contact me with any articles you recommend or if you want to share what’s worked for you.
My optic neuritis has finally improved and I am waiting to see my lovely neurologist in April to discuss the results of a new MRI and Evoked Visual Potential tests. I’m hoping for the usual “nothing obvious to see, but we expect that with Dystonia” response.
My Tourette’s like symptoms have been slightly more prominent lately and I would love to hear from any spoonies with this/symptoms similar to this. The word ‘lemons’ escapes me far more often than I care for in a day and whilst this is manageable I’d still like to hear from others about any ways of calming it. Naturally this will be another little chat with the neurologist in april.
I’d like to take a quick moment to thank the many people who emailed me their thoughts/prayers etc after I shared my diagnosis of postnatal depression the other month. My PND I feel was the result of extremely poor and traumatic antenatal care*, after several hard months I feel like I am turning a corner. I cannot express enough how much hearing from so many of you who wished to share with me how you navigated PND helped me to feel less alone during a time where my emotions and anxiety where crippling me. Thank-you.
*Some elements of my antenatal care were perfectly fine however overall without going into detail it was a traumatic experience which need not of been so. Complaints were logged with the trust at the time.
Since I last blogged things have been hectic. I have spent the majority of my days either at the hospital having various investigations carried out, or on the phone to them chasing down followup appointments. This week I have had more bloods taken and an MRI of my brain, eyes and spine with contrast performed. Tuesdays MRI experience seemed a bit surreal. It took 35 minutes, three medical personnel and 7 attempts before I was successfully cannulated as my veins were up to their usual disappearing act. This time allowed for me to internally become quiet anxious at the thought of being in the MRI machine for a minimum of an hour – in the end it was about one hour twenty. I am generally not a claustrophobic person, but this machine brings that fear out in me, this is most likely exacerbated by the fact that I have to be strapped to the table to ensure my spasms cannot move me around to much and distort the images.
My stress levels have been through the roof this last week. I have fought so hard over the last four years to be put on a medication regime that allows me to have more control over my body again, and live a relatively normal life. The mere thought that my body may become more of an issue again is distressing. However I am lucky that I have a good support system in place, my family help keep me distracted, my boyfriend is great at talking through my concerns with me, and my councilor has been a fantastic space for me to vent and explore my frustrations at my faulty body.
I get the results of my MRI on Monday. So I shall know then whether more investigations need to be carried out or if it is MS.
This week I have had three GP appointments, and visited three different hospitals. It’s been busy to say the least. For the majority of it I have managed to stay relatively calm and think in clear cut clinical terms. Today that went out the window. My GP this morning, unhappy at the treatment I was receiving at another hospital sent me with an urgent referral to my nearest emergency eye unit. It has been an extremely long day of explaining symptoms, examinations and watching the same concerned expression on the nurses and Drs faces, when they realize that yes I really cannot see out of my eye.
Optic Neuritis for the second time in just under six months had the Drs in charge of my care today fairly concerned. Today they presented the fact to me that they had to consider that Multiple Sclerosis was the reason behind my Optic Neuritis. So tomorrow I’m heading back to the hospital for blood tests as there are a few other conditions than cause vision problems that they want to rule out, and at some point in the next two weeks I’ll be having a contrast MRI of my head and spine to give them more of an idea of what is going on. Now I’m doing my best to remain optimistic, my way of thinking so far is that I already have a fair few neurological issues, so surely it’s another part of the bodies turn to be the problem. Not the most logical attitude I know, but it’s working for me.
In the meantime, Disney soundtracks are my distraction.
I was up in London today for an appointment with my fantastic neurologist. Whilst I always stress over the little things like timings, how the injections will go and medications, I never stress over seeing him. His manner is so calming that during the appointment I feel as if it doesn’t matter what he says, it’ll be okay as we will always put a plan of action in place to try and make the future as pain free and positive as possible! The hospital I attend has some fabulous Toy Story themed stickers on the wall in the waiting room which I love. As I’ve mentioned before I always picture my Dystonia to be a Toy Story style alien named Benedict. Which is why this picture naturally had to happen today 🙂
I’m currently coping with Optic Neuritis on top of everything else. The hospital which I’m under for this had decided to leave it up to my neurologists as to whether or not I was treated with steroids. He has decided that he wants me started on steroids and wants an MRI with contrast carried out, as this is my second flare up in six months. I shall be spending Thursday at the eye hospital so hopefully I can talk to them about getting all of this put in to place and moving forwards.
Overall today went extremely well.
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