Hi all. Hoping to maybe get some information from anyone that’s been through something similar. I went no my GP in January with a list of symptoms where she referred me to a spine specialist. She mentioned stenosis of the spine or MS based on my symptoms. I had my appointment a few weeks later with a spine specialist who booked an MRI which ended up being 6 months after I saw him due to Covid! I had a call a couple of days after my MRI to inform me that my spine is fine however, I am being referred to a neurologist which has been rushed through for 3 weeks time. The letter says its to discuss treatment!! The spine specialist wouldn’t give me any further information. I’m so worried. My symptoms ease slightly then come back worse with new things happening and the pain I get some days is unbearable.
The clumsiness, tingling in legs and numbness have got worse when I have another episode but I also have no real relief from it if that makes sense. I’m now unable to drive or sit in one position for too long as my legs seize up leaving me unable to walk. Mornings are horrific, stretching helps a little. I have awful tightness in my rib cage and can barely breathe from the pain. My coordination has got worse and I find it confusing when a lot is going on around me.
I used to be so strong and organised where now I struggle to get up the stairs some days. I’ve just turned 40, I feel like I’m 80. My strength, coordination, and thinking has declined in the last 3 years. I put all these things down to getting older but really, looking back, it’s not that at all. It’s frustrating and upsetting. I am a single mum to a 10 month old baby and absolutely terrified about what to expect at this meeting I have only because of the deterioration in my health and symptoms getting worse which feels like has happened overnight!! Some days, not many, I feel great and can get up and feel on top of the world so can get on with chores, dance about with my little one then it all starts again. There are so many symptoms that I feel like I’m actually going mad and it’s all in my mind.
Can anyone relate to this and then had a diagnosis of MS. It’s also temperature problems, cold feels super hot, buzzing down spine and into legs, shocks down spine when head moves forward, tingling left hand, problems concentrating and easily confused on a bad day, legs feel like absolute lead weights then fine again a few days later, weakness in legs, excruciating pain in back and ribs. A bath sets off pins and needles in legs, feet and sometimes hands.
sorry it’s such a long post, I have no one else that I can talk to about all of this and worried sick.
In reply to above ,sorry your having such a tough time .If it is MS (and it may not)there is treatment and support which really does help.
If it is MS symptoms you describe will come but also go and the more you understand about MS and a treatment plan it will ease off but the horrible thing about MS is the more you stress and the more anxiety you feel symptoms increase.
MS can be managed and you can live and function well it doesn’t mean that you will be suddenly disabled and its not a death sentence any more but please try to relax and stretching exercises and home yoga will help not only with physical symptoms but also your mental well being (google home yoga and even enclude your baby if possible).The more you start to relax the less the symtoms will be.
If it is MS you will have support from MS nurse and also this site helped me .
Try not to google too much as it can be frightening and again the anxiety will take over .
Please feel free to ask questions if needed
All the very best and it will start to get better but go with all your apts and support .
I am sorry to read how difficult some days are for you…especially with such a young child to take care off.
Im afraid to say your symptoms do sound MS like. But as you havent yet been told what is causing these problems, lets hope it is something else, maybe a trapped nerve, which can be treated.
Thanks for the message. I do try and stretch as it does feel great after getting through the initial pain. I will have a look at the yoga and give that a try. I’ll try anything at the moment.
I have been very stressed out to be honest so it’s probably not helping my situation. I’m just so worried about what to expect or how I will continue to cope with a baby that’s starting to get about a lot more when I’m in so much pain and exhausted, barely able to walk by 2pm.
thanks so much, I will definitely have a browse online for some yoga classes etc and think I may be back on here again soon for some support. It’s so difficult trying to explain how I feel to people as to them I look absolutely fine!
take care
Thanks so much for the message. I am just trying to make it tommy appointment now. My GP has given me a very low dose of Gabapentin but it’s not doing anything. She advised not to take codeine and paracetamol to see how I get on. Really really not good! Pain and stiffness is terrible and like I mentioned on someone else’s comment, I’m struggling to get through each day with a little one to look after alone. And it’s difficult for family to see the problems I have as they are invisible to them and I look fine! Apart from when trying to get up off a chair or the floor!! Haha
I’m calling my GP again this week to talk about the gabapentin as she wants an update. The symptoms haven’t eased but have got worse since January so not too sure what’s happening. When I think back, I’ve had various symptoms on and off for a few years now but never really thought about it. I’ve had odd things happen that I went to the GP for but they put these down to other things.
I’ll try and relax a little and see what happens. Making myself sick with worry isn’t helping at all. To be honest, I’ll be very surprised if it’s not MS. Just want to know now and get some proper help with whatever is going on.
Thanks again, I’m sure I’ll be back with more questions and support soon lol.
Take Care x
the tightness in your ribcage is probably the MS hug which is caused by the tiny intercostal muscles (between the ribs) going into spasm, there is nothing you can do except take a muscle relaxant and rest.
Ideally your baby can join in mummy’s nap time.
Pilates is the best exercise for MS as it strengthens the abdominals and they can be a great source of strength.