Limbo land and diagnosis
Where to begin I believe I've had symptoms for a number of years but put it all down to ageing and being clumsy and a stressful job. Symptoms got worse around 18mths ago with chronic fatigue, loss of consciousness and collapse, falling , nerve pain in feet and originally right hand but now both, back pain , short term memory, concentration, dropping and bumping into things , sensitivity to light sound and touch at times and the list could go on involving a number of trips to A&E. I also have IBS which has become worse over the last few years. I've had two mri scans and first found lesions on brain and cervical spine and second mri no changes were found thankfully. I thought my 2nd scan was a good outcome but my Neurologist disagrees saying that means I cant have any DMTS ! I had a lumbar puncture in August to confirm diagnosis and just received a letter stating that no oligoclonal bands in csf and can't confirm ms diagnosis although radiologically I have central demyelination without dissemination in time. Neurologist has said my diagnosis is still probable ms and I will be under regular review. I should probably point out I'm 58 years old. I'm really concerned as I have a sister with ms and I'm convinced I have the same condition so is my Neurologist but I don't meet the McDonald criteria. I'm struggling to work and don't know as I'm undiagnosed if I'm protected by the disability discrimination act ? I still have the same problems and disabilities but no confirmed diagnosis. I've been off work for sometime and I agreed to undergo an independent medical examination. The occupational physician recognised my symptoms but has recommended a phased return to work. This is despite my telling him I do go to bed at various times in the day due to my fatigue and I've no idea from one hour to the next how I will feel and can't can commit to doing my job as I have done in the past. I was completely overwhelmed which resulted in my being signed off. Just to give some context I've worked in this industry for 40 years the past 20 in my current role and 9 years in my present job with good results. My employers have insurance for Income protection this was declined by the insurance company as they said work related stress was not covered. I pointed out the reason I wasn't coping was my illness and not then being able to fulfil my role. Any thoughts or advice would be appreciated I'm sorry for the long post I've so much more going on with my husband about to have a double bypass and heart valve replacement and I'm just trying to keep it all together. I'm usually a very positive person but I'm just finding my ongoing symptoms and lack of a confirmed diagnosis and treatment difficult to deal with.
First of all, hi! And thank you for sharing your story. I can only imagine the frustration you have to be in the position you're currently in. I've heard a few stories of those who either can't be diagnosed because symptom timeline or space between symptoms don't meet the criteria for diagnosis, or they can be diagnosed but don't meet the criteria for treatment funding, for the same reasons in symptoms timing and whatnot. I guess what they will do is continue to monitor you and see if there is any progression? You could always ask for a second opinion or a new doctor to review your symptoms??? The advice I was given when I was experiencing my worst symptoms, and trying to go through the public health system, was to keep going back to hospital, to try not get lost in a system that is albeit pretty overwhelmed at the best of times in my country, may be different for where you are and it seems you've already got a neurologist to see? Fortunately I had a history of numbness on two prior occasions, that I didn't even remember going to a doctor for, and combined with MRI results, that was the reason I was able to be diagnosed. Without those past records on my history, I wouldn't have been able to be based off one episode, which I find so so so horrible that there is such criteria in place. Your work situation is also such a tricky one. Not being able to work, but not having a medical diagnosis behind you would be so difficult, especially for others to understand how you feel with fatigue and all the other symptoms you're experiencing. I'm so sorry that this is the situation you're in. I have had to stop working as what I do, involves tiny babies and needing to be able to feel your limbs is pretty helpful when holding them. It's unclear if or when I'll be able to go back to work as I know it, or need to find something entirely different to pursue in life, which has left me feeling pretty down and out at times, which only enhances the stress and symptoms I'm currently facing. It's a real circle of life and extremely hard to stay positive at times, so I guess on a much smaller scale, I can relate to not being able to fulfil the role you're in. I also don't have a husband who is also facing health issues, to add to the already present stress, so I'm sorry that's another thing on your plate! Is there anything you enjoy doing that you could think of taking the time to do? You seem to be right in the thick of what you're going through, so easier said than done to take time out for yourself and try to de-stress a small part of your mind, but really would be worth taking the time to try. Something so small as walking to the supermarket and picking up a little croissant and having a wee picnic to myself, was in hindsight a total saving grace on a really struggle street day. This may not have been so helpful for you, but hopefully you know there is a place you can talk freely about how you're feeling and that you're not alone. I really hope you can get a diagnosis of some sort, so you can have relief and understanding of what is happening, and a plan of action of where to from here. Also really hope your symptoms do ease, and you're able to get back to a bit more of a normal life. Remember to be kind to yourself all same time though 🖤
@alrain thank you for reading and your kind thoughts. Really sorry to hear you can no longer work in your job especially as you enjoy doing it. It's such a difficult process to give up work. Unfortunately my symptoms have not eased and are getting more difficult especially fatigue and numbness/ pains and needles in both hands ( previously just right hand and now left is even worse )and burning in feet which is constant now. Thinking back I wish I had presented with symptoms I've had in the past but I was too busy getting on with life to go to the Gp and thought I would be wasting their time. I really enjoy time spent outdoors and I have a 4 month old whippet puppy who keeps me on my toes and I'm enjoying training him. My friends and family are great and really supportive as is my lovely husband who has enough of his own medical problems to deal with and I think we are just worried about each other at the moment. I do realise how lucky I am and I've had a good life so far and really enjoyed myself and I certainly hope to continue to do so. Sending you a big thank you for lifting me out of bit of a black hole and seeing the good things in my life. Take care x