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Need help with best route for my wife's symptoms
I've just found this site & forum tonight while trawling the internet trying to see if I can find any information on my wife's symptoms. I hope I've posted in the correct place.
Background: 40 year old, healthy female, slim (UK size 10-12). We have two girls - aged 11 & 2.
My wife has been feeling generally unwell for around six months, but not every day. Been to doctors many times, but it gets put down as a virus and given antibiotics.
More recently getting worse and she's had the feeling as if she is on a boat (i.e slightly wobbly). Also gets stiff neck and aching legs. It came to ahead last week when she began to feel unwell while in a restaurant, then fainted (not the first time either!), limbs shaking, more fainting. Ended up in A&E by ambulance. After a few blood and heart tests, she came home a few hours later. They suspected she had a seizure and were referring her to the neurology dept. for further scans etc.
The next day she felt worse again and we went to the local community hospital and a very good doctor there spent an hour checking her and listening. Symptoms then (and times before) were: feeling like on a boat, stiff neck, aching legs, burning calfs, occasional electric shock feelings up neck, pins & needles in feet, numbness in one side of face and lips. He phoned a neurologist at the hospital for his opinion and confirmed that a consultation and further tests would be needed, but not via A&E.
Since then she has been unwell and in bed most of the time. But also feels better for hours or a day, then worse again.
Symptoms tonight are: burning in angles and wrists, aching legs, stiff neck, feeling as if something is wriggling in one ear, shaking limbs, numbness around mouth, pain in right arm and right leg tremors.
Do these symptoms suggest anything to you? I've read a few posts here from others with some of these symptoms and about to start reading more on ME and lyme disease.
She has been told not to drive (until she sees the neurologist) and told our motor insurance is not valid if she does(!). This is a big problem for us as we live in a very rural rural area. I'm having to take time off work now to do the school runs and sort the kids out etc, so we are desperate to get an appointment with a neurologist to start diagnosis process going. I'm self employed and can't afford to not be working for too long. We visited our GP who again chased the neurologist appointment and he said it will be within 2 weeks. My wife has been in touch with the hospital, but they can't give her an appointment, even though her referral has been marked as urgent and all they can say is that they will write to her in 10 days time and can't even confirm if they can allocate an appointment then. So it is looking like an appointment could be 4 weeks away or more. We've also asked our GP twice if we can get this initial consultation privately to speed up the waiting and his view is there is no point as it wont be much sooner and he's been unwilling to pursue this avenue. She's feeling very frustrated.
One of her earlier visits to our GP resulted in a referral to the Ear Nose & Throat clinic, due to her feeling of swaying. This was two months ago and she still doesn't have an appointment for that! The hospital has written twice to say "still unable to allocate an appointment". So we're wondering if the neuro clinic appointment is going to be similar. The NHS is such a postcode lottery.
Symtoms are:
Background: 40 year old, healthy female, slim (UK size 10-12). We have two girls - aged 11 & 2.
My wife has been feeling generally unwell for around six months, but not every day. Been to doctors many times, but it gets put down as a virus and given antibiotics.
More recently getting worse and she's had the feeling as if she is on a boat (i.e slightly wobbly). Also gets stiff neck and aching legs. It came to ahead last week when she began to feel unwell while in a restaurant, then fainted (not the first time either!), limbs shaking, more fainting. Ended up in A&E by ambulance. After a few blood and heart tests, she came home a few hours later. They suspected she had a seizure and were referring her to the neurology dept. for further scans etc.
The next day she felt worse again and we went to the local community hospital and a very good doctor there spent an hour checking her and listening. Symptoms then (and times before) were: feeling like on a boat, stiff neck, aching legs, burning calfs, occasional electric shock feelings up neck, pins & needles in feet, numbness in one side of face and lips. He phoned a neurologist at the hospital for his opinion and confirmed that a consultation and further tests would be needed, but not via A&E.
Since then she has been unwell and in bed most of the time. But also feels better for hours or a day, then worse again.
Symptoms tonight are: burning in angles and wrists, aching legs, stiff neck, feeling as if something is wriggling in one ear, shaking limbs, numbness around mouth, pain in right arm and right leg tremors.
Do these symptoms suggest anything to you? I've read a few posts here from others with some of these symptoms and about to start reading more on ME and lyme disease.
She has been told not to drive (until she sees the neurologist) and told our motor insurance is not valid if she does(!). This is a big problem for us as we live in a very rural rural area. I'm having to take time off work now to do the school runs and sort the kids out etc, so we are desperate to get an appointment with a neurologist to start diagnosis process going. I'm self employed and can't afford to not be working for too long. We visited our GP who again chased the neurologist appointment and he said it will be within 2 weeks. My wife has been in touch with the hospital, but they can't give her an appointment, even though her referral has been marked as urgent and all they can say is that they will write to her in 10 days time and can't even confirm if they can allocate an appointment then. So it is looking like an appointment could be 4 weeks away or more. We've also asked our GP twice if we can get this initial consultation privately to speed up the waiting and his view is there is no point as it wont be much sooner and he's been unwilling to pursue this avenue. She's feeling very frustrated.
One of her earlier visits to our GP resulted in a referral to the Ear Nose & Throat clinic, due to her feeling of swaying. This was two months ago and she still doesn't have an appointment for that! The hospital has written twice to say "still unable to allocate an appointment". So we're wondering if the neuro clinic appointment is going to be similar. The NHS is such a postcode lottery.
Symtoms are:
The wriggling in the ear brought attention to me. Have they tested for parasites? I know that sounds gross, but parasites are more common than anyone thinks, and it's the last thing they think of. People have died because of parasites that get in the brain (hence, all the motor skill problems, etc.) and because of the feelings of wriggling in the ear.
Seriously, ask your doctor about that, they're are many parasites, and it doesn't mean your wife is dirty or anything, she could have gotten it from food.
Seriously, ask your doctor about that, they're are many parasites, and it doesn't mean your wife is dirty or anything, she could have gotten it from food.
I really feel for your struggle in getting the help you wife needs. If this is any help, go to the National Institute of Health website. There is a research program for undiagnosed people who are suffering. There are two forms you will need to print, one a doctor has to sign stating she needs this program, and the other is for your consent.
I brought my daughter there and we got help from an endocrinology study they were doing there. Do not worry , your wife will not be a lab rat, anything you do not want them to do they will listen.
Its a whole new kind of medical world there. They are very accommodating, friendly, and actually want and don't stop until they can help you. They restored my sanity and my daughter's health.
I brought my daughter there and we got help from an endocrinology study they were doing there. Do not worry , your wife will not be a lab rat, anything you do not want them to do they will listen.
Its a whole new kind of medical world there. They are very accommodating, friendly, and actually want and don't stop until they can help you. They restored my sanity and my daughter's health.
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