I had fatigue, pain and stiffness for a year, gradually began limiting what I was able to do because the pain and stiffness round the back of my hips was so bad. Had early menopause 2.5 years ago, and then a few months ago got a weird, very strong tingling on my right thigh that i feel every day 2 or 3 times.
Had covid in December so at first put the huge increase in exhaustion, memory problems and all other niggly things down to that, like pain in my arms and neck when im sleeping, the weird thing my stomach muscles do when they kind of clench together (I cant do it at all by will, my body just does it by itself😬) Had blood tests and more blood tests, chest x ray, resting ecg, all are ok.
In past few months the slight weakness i noticed in my right arm had become worse and worse. I cant even lift the kettle now. It hurts if I try and force it to work like it should - tried to use a tin opener last night and that hurt SO bad so no wonder it’s painful today. My arm has deteroriated since February and I went to a GP who initially referred to muscular skeletal and noted the weakness with no injury causing it etc, but refered on to rhematology. That wait wait was a year or more. When I went back to the GP, she recorded a significant loss of strength and she said it isn’t arthrtic, the symptoms are muscle and nerve related. She reffered to neurology and I have an appointment in 5 weeks time. Rhematology have moved the appintment up to 3 months now too.
I am terrified. The deterioration in my mobility, use of my arm and exhaustion, and the memory blips - it’s all seriously scaring me now.
What happens at an initial neurology appointment? Would the process to ruling out or diagosing M.S.take months? I cant cope with this fear.
If it does take months, what does it cost to get tested privately? Probably way out of my reach, but worth knowing if it is even a remote possibility.
How can I stay calm? I am so scared. I’m a single mum with no family, I’m so alone and can’t handle this uncertainty or how physically impacted I am. I could run with my kids a year and a half ago and thats impossible now.
Hi Ruby44, I really feel for you and what you are going through and hope you can get some answers soon as not knowing is worse than knowing. That’s because once you know what it is you can get the right treatment to ease some of your symptoms so life can return to a better place for you.
I can’t answer some of your questions because I just don’t know, but wanted to reach out to you and let you know people care. You are obviously a strong person and you WILL get through this.
Thank you for your reply, it’s good to be able to vocalise all this. Some days I feel so overwhealmed that I just keep feeling I’m at my limit for coping. It’s good to talk, and I always appreciate hugs
Private depends it isnt as bad as you think. You have to be referred though to the neuro to see him privately and not all of them have private practice. NOT sure where you live but you can find out easy enough.
You can buy a tilting kettle they are safer, so you dont have to lift it at all to fill a mug. I feel you should be assessed too for care needs. contact your local Adult social services and they will if they think you fit the bill come and assess you. I dont know how old your younguns are but as your a single mum I am sure there is help for you, also an OT appointment is needed. You have to be safe. do find out the cost of private dont be scared by it, as its worth it.
the one i saw privately i saw with the NHS lol.
Its around 150 for half an hour. worth every penny. xx
Ah I see, I have the nhs referal, so I think I would go to the gp to get a private one - I’m in Oxfordshire so its John Radcliff hospital.
I didn’t know about tilting kettles! That sounds so helpful! Definitly going to get one, really need something for opening tins too but the cheaper battery operated opener i had, broke after a few weeks so I think that needs to be a more robust one.
I didn’t realise I could be assessed for care needs, I assumed only people with diagnosis could use that, so I hadn’t even looked at it.
Is adult care the same as social workers? I’m really anxious about them being involved, being a single parent. A year a ago, my kids school took my PIP form (for mental health and incontinence) and read it and told social services everything they read and they then visited me, assessed my parenting, it was hell. I am so scared of them coming anywbere near my family again - thry even looked in my cupboards i bafrly slept until they finally made no findings against me and closed the case but it was a horribly worrying time. So I’m very nervous about them.
Is OT ocupational therapist? Sorry, I’m not familiar with all the terms! Ive assumed that i couldnt get any help unless i had an official name for what was wrong so I haven’t looked into any of this. Thanks so much for your reply, this is all hugely helpful! X
Dr Jane Adcock. Principal hospital : John Radcliffe
You could ring them and ask them if there is a consultant who will see you through private as you have an NHS referral believe it or not most neurolgoists work in NHS and private so your referral is fine. they will then tell you how much it costs etc.
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can i ask you why did the school have your PIP form? sounds to me as if they over stepped. Look i am not adverse to workings of social workers, my daughters school reported her as her son was overweight. My grandson had learning disablity and was at the time going through SEN assessment. All hell let loose and it was hell for several months but i get you. BUT it was all chucked out but when he was 16 we did call on them again for support and they were amazing and put him in a half way house as he was diagnosed with ADHD and on the autistic spectrum. He wanted to learn how to cope. He is now 18 and been there 2 years and is going to go to UNIVERSITY, we never thought he would get that far. So although at the beginning SW were a bit heavy over time it worked in my daughters favour as like you she proved he was a good mum. (grandson was secretly eating and drinking a load of pop we found out when i went to local shop and asked staff. He had been taking bits of money too out of her handbag, and adding it to his pocket money.
anyway i digress.
adult social care is there to assess YOUR care needs. If you dont think you need them then fine.
Did you get your PIP?
OT IS OCCUPATIONAL THERAPIST.
You dont need to be diagnosed if you are disabled you are disabled and if you have a need then you have a need. I had ASS assess me way back and i didnt have my diagnosis of MS at the time. I got DLA full and didnt have my diagnosis until 2016.
I would concentrate on neurology first if you can get an early appointment at least you will feel better.
as tilting kettles can be a little expensive i found this for you.
this is the can opener i use. i do tend to go for ring pull if and when i buy tins but even they are hard work lol.
do you not have any family to help you? grandparents etc?
Kids can be very helpful, if they are old enough you can teach them to do chores and help you out more.
anyway try to relax and take a deep breath, not everyone is out to get us lol. But you obviously need some support either way. xxx
i bafrly slept until they finally made no findings against me and closed the case but it was a horribly worrying time. So I’m very nervous about them.