Hi there, I hope everyone is safe and well. Without boring everyone with my life story here’s a summary of what has brought me to your community. I’m a 34 year old (soon to be 35) female. I’ve generally been in good health but, recently, suffered from exhaustion, pains in my hips, back pain, numbness in my hands and arms and, most recently, in my leg too. In recent weeks, all of these symptoms seem to have “flared up”. I have experienced cognitive problems and speech problems. It’s like I know what I want to say but the words don’t come out correctly. It’s hard to explain but I just don’t feel right, or well, at all. Yesterday I had a new symptom…I experienced numbness in one of my fingers, then it curled up. I also have an intermittent bizarre feeling on my chest. It sometimes feels like pressure, but only in one small part at a time. It can come and go in a matter of seconds, other times it lasts a little longer and can feel more like a sharp pain. I have had an ECG a year or so ago and that was absolutely fine. I’ve had other symptoms such as bladder problems (going to the toilet but then immediately having to go again) and a couple of episodes of bowel incontinence (maybe some gluten sneaked into my diet?) Many years ago I had a diagnosis of fibromyalgia but I sort of dismissed this. I also have coeliac disease. My grandma had MS bit she passed away when I was very young so I sadly don’t remember her. My doctor has run all of the usual tests but has decided to refer me to a neurologist. Whatever the outcome, I’m just keen to have a diagnosis as it’s the not knowing that is difficult. I’m sure a lot of my symptoms could be associated with many ailments! I’m just pretty confused, in limbo land, and I guess I want reassurance that I’m not the only one who has experienced these worries and frustrations. It’s a minefield, isn’t it?! Thank you for taking the time to read my post, Jen
Similar to you I feel exhausted a lot and had horrible burning pain in my left hip that nobody could explain. I also struggle with finding words or I’ll stutter - something I’ve never done before. I’ve had one MRI that found some lesions but I’m in limbo and feel like I’m losing my mind a little when something happens and I can’t explain it. Can reassure you that you definitely aren’t alone here.
Hi there lovelies,
I ve just recently received my diagnosis of Secondary progressive MS. I was in limbo for a while but I also can reassure you both you are not losing your minds. My MRI showed inflammation on my brain and my late uncle had MS we lost him 20 years ago due to complications of MS. I now fight this condition in his name I vow to take DMTs as he wasn’t around long enough to see what progression we have made to fight this condition. I ve had all my procedures the lumber puncture wasn’t a high light. I have weakness in my right leg I use a stick now it’s very pretty. My point is to you both stay positive and stay strong! I understand how difficult it is at the moment especially as we are in a COVID lockdown. MS has a mind of its own but your neurologist will be able to give the answers you need and if it is MS your nurses will give you support, advice and reassurance.
stay safe, positive thoughts and take care my lovelies x
Caz
Jen and Aims
You must have a neuro to have had MRIs.
I always assumed that if lesions turned up you would be passed on to a MS specialist neuro.
That’s what happened in my case.
then again I was lucky enough to have had my MRIs before covid came and jumped the queue.
Don’t doubt yourselves. It is your body and you know how it has changed.
It is useful to keep your GP up to date with symptoms, even by telephone appointment at least it will be added to your records.
Be strong and prepared to fight your corner.
Thank you for that Carole. I haven’t been passed onto MS specialist neuro - I’m not sure if West Yorks hospitals have an MS neuro since one left Pinderfields in 2018. I’m under the same lady I saw for 1st appointment, I’ve come home this evening to a letter moving my appointment forward from May to March so my GP has written to her again which is reassuring. The eye pain/headaches are driving me crazy now as well so timings good. Covid has definitely put a spanner in the works. I have anxiety that she may dismiss me, but I’m going to keep logging unusual things that happen to me.
Definitely keep a note of symptoms and new ones thinking of you huni
and stay strong x
Jenbon - your story could be mine. I am also a 34 year old female who in the last four weeks has suddenly experienced so many of those symptoms you describe. My physical symptoms have presented and increased with such severity that it’s all been a whirlwind. I ended up in A&E last week as I could barely move both of my arms and my left leg. I have been keeping a symptoms diary since this all started which I have found really useful as so many niggles have been identified as potential MA symptoms.
I was lucky in that my GP went through a similar experience last year so instantly referred me for an MRI, I waited less than a week for the scan and my results came back the next day! Where I have experienced issues is that the neurology consultants keep downgrading my referral to routine - a telephone appointment could take months.
I have been proactive and complained to Pals and found other ways to contact the MS team in neurology. I’m hoping that will lead to a quicker appointment as driving, working and basically living has become near impossible in these last few weeks.
I hope you get some answers soon. X
Hey Aims, Sorry about the late response, but thank you so much for your reply. So, even though you have lesions, can MS not be confirmed? A lot of your symptoms sound so similar to mine. Big hugs.
Hey Caz, Thank you for your message. I’m sorry to hear about your uncle, and your subsequent diagnosis. You sound like you’ve got such a positive mindset and seem focused on not letting this define you, go you! I haven’t yet received an appointment for the neuro, still waiting, but I understand that there’s so much going on in the world right now, so I might be waiting quite a while for an appointment. Its great to know that there’s such a supportive network out there! Stay safe x
Hi Carole, Thank you for your message. I haven’t yet received my appointment to see the neuro, never mind an MRI, so I’m anticipating quite a wait! I have been emailing the doctors with any new symptoms. I feel like I’m pestering them, but I know when I’m not right. My symptoms seem to have settled a little…I hope I haven’t jinxed it! But the annoying and uncomfortable numbness in my arms and hands is always there. I’ve previously had physio in case that would help but to no avail. Just want answers, but I’m practising patience. Just very fortunate to have found a very supportive network, so thank-you! Jen x
Hi SocialSian, Thank you so much for your message. I’m so sorry to hear how badly you’ve been suffering with symptoms. Sounds like your GP is really on the ball, so that’s great news. My GP was similar and was very proactive. She has completed the referral, its been a few weeks now, but still not heard anything. I don’t like to chase it as I understand that times are difficult for all at the moment. I’m starting a new job and moving house within the next 2 weeks, so I’m a bit anxious about what kind of an effect this might have on my symptoms, but just taking it one day at a time. Have your results confirmed a diagnosis of MS? I hope you get a satisfactory response from PALS. Stay safe, and thank you again for your reply. X
Jenbon
Take care not to let the house move cause you too much stress because I quickly found out that stress makes all symptoms worse. Accept any help that is offered.
Good luck in your new job.
That is easier than the house move because you employer has a duty to make reasonable adjustments, such as adjustments to your work station, lighting, stairs and the like.
Go get 'em!
Thank you so much, catwomanCarole58 (love your username!). I shall try to take it as easy as possible, and keep updating this post with any updates. Many thanks for your kind words and support.