MS Society UK | Forum

Feeling really let down

Hi, I’m new. Well I’ve been reading for a while now. I did a post back in November but I deleted it due to the fear of no replies and the emotional state I was in at the time.

Will start from the the beginning but will try be brief for all your sakes.

I’m 41 female and unbeknown to me I’ve perhaps had symptoms for a good few years now but dismissed them.

I’ve had numbing In face,lips,lost feeling in right arm for a while ‘right arm’ had a ct scan on chest as I felt it tight and pain to the right side where ribs are. Dizziness that came and went, Numb in toes and hands especially when cold and strange feelings in my legs. i generally put all these Down to being a busy working mum.

Fast forward to June last year, I contacted covid. I wasn’t I’ll with it but the dizziness was awful I was in bed about 6 days, I thought I perhaps had an ear infection but it did go away.
By end of July I was ok working etc then my knee started to get really sore I could hardly walk, bend it etc. contacted gp who referred me to physio and to apply gel. By mid August I was no longer at work due to dizziness and my knee pain so I finally managed to get a face to face appointment with my gp. She didn’t think my knee was a concern even though I knew it wasn’t and injury. She diagnosed me with long covid even though I said to her I wasn’t that unwell it was dizziness that was my main symptom.
I started to get better again but the fatigue was intense.
Fast forward to end of September the dizziness was starting to get really bad, I could hardly walk or do stairs. I ended up really poorly but then I realised I had tonsillitis, which I got antibiotics over an econsult for. They cleared up the tonsils but I was literally in bed all the time, couldn’t walk straight, knee terrible and I started to not see very well. Couldn’t drive for fear of crashing. The week after the tonsillitis appeared I nearly collapsed in my kitchen with what I can only describe as electric shock from the top of my spine down. Then a hot tap running. My husband took me to a&e but the said sinusitis. I literally could hardly walk and that wasn’t even in a straight line. That pain has never gone, some days are worse than others. I’ve done so many email consults to my gp and they finally seen me in end October where she said she thought I was depressed and with it getting dark at night and in the morning it can make you feel low. I should’ve not cried when I went in, I’ve been absolutely petrified at my symptoms and at one point I couldn’t even remember my kids dates of birth. She might as well have laughed at me. Diagnosis long covid it will improve. She said ma doesn’t cause pain and basically you’ll get better. I was absolutely deflated.
I ended up with a further 2 trips 2 casualties with horrendous pain in my brain and mobility and shaking.

After I saw that gp, I wiped my tears and thought what I have is not right, it’s terrifying. So I saw a private gp who was amazing. I’ve had an mri privately on the brain it was clear. But I’m so confused, my symptoms are too date…Muscle twitches, leg spasms, mostly right leg, face numbness,tightness around bra area, r rib pain, shaking when cold, numbness in legs as in i now can’t feel my razor. Brain is definitely not as bad and I can drive now. My back hurts daily, I seldom don’t have a day when I don’t need a nap. Dizziness comes and goes, I’m definitely worse at night. Even my bum cheeks twitch at times. R arm weakness. Trainers now feel best on my feet.

Anyway sorry to go on, I have a neurologist appointment at the end of the month through the private sector. My gp didn’t believe me, and thinks it’s long covid and pushed me away with no help, no follow up.
I’m no longer in employment and I struggle daily to care for my home and children. On a plus I have an amazing husband who like me just wants to be able to be ma again. But I really feel I’m to far gone for that. Perhaps transverse myelitis, Ms, Lhermitte’s sign whatever it is I’m worried, confused and deeply saddened that my gp surgery have treated me so badly.

I’ve probably missed quite a few things out but thanks so much for reading. All of you have helped me so much over the past year.

1 Like

It sounds like you have indeed been let down badly. If you have the energy it would (in my opinion) be good to let the GP practice manager know, not to be nasty but to alert them to short comings which if dealt with might prevent further suffering for others.

I really hope that your neurologist is a good listener and provides good quality support.
All the best
Mick

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Feeling that your GP dismissed you and you deserve better. Wishing you all the best from the USA (lived in Cambridge '85-'86) - Purple65

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Thank you @Purple65 I just wish I knew now. I’m not good with waiting and feeling the way I do.

I really feel I have, although it’s unknown what is wrong as I need to see neurologist at the end of the month. Think once I know I will take it up with the practice. Thank you very much for your reply