lower right leg

[Amy2805]

hi, im 32 and I’m hoping someone maybe has similar symptoms to me but with answers. I’m currently on a 20 month waiting list to see the neurologist. I have scoliosis but had an mri of the spine and they have ruled that out causing my leg issue. So my symptoms are all in the lower right leg and foot knee down;

• Weakness

• Slight Limp

• knee sort of locks

• tingling all under foot

• Sharp shooting pains in outer calf

• feels like I’m walking with a massive cushion around my lower leg

• sensation in leg not as strong as other leg

Does anyone have anything like this please it has got gradually worse since November when it first started.

Thanks in advance

Amy x

[MoyB]

Hello, Amy. I have just seen your post and am surprised you have no replies.

I am a lot older than you are (72) but have some of the symptoms you described. I also have unexplained falls and was finally referred to a neurologist but, like you, discovered there is a huge wait.

I chose to make a private appointment which cost me £140. It was worth every penny. The neurologist understood that I was self-funding and would not be up for paying to have a lot of tests done so she asked my GP to make a referral to her and I had MRI, CT and nerve conduction tests done by the NHS within a couple of months.

I should mention that I have had this problem for over three years and have been previously seen by the Department of Elderly and Frailty and ENT. Both discharged me as they couldn't find anything wrong. This was why I didn't want to wait another year or longer to see someone that I should have been referred to in the first place.

I have to go back to see the neurologist in a couple of weeks time, but meanwhile, she has written to tell me that the tests show there are some age related changes to my brain (within acceptable limits for my age) but all my arteries and blood vessels look good and there are no obvious issues with my spine or neck that would be causing the problem.

I do, however, have neuropathy in my right foot ie one of the nerves has stopped working. This gives me a sensation of walking on a lilo at times. It feels extremely odd as my foot feels as though it is numb inside, yet I can feel it when I run my finger over it.

I don't suppose my answer is particularly helpful, except perhaps to encourage you to explore the possibility of a private appointment if you can raise the cash for it. The neurologist I have seen works with Spire healthcare as well as NHS.

I know that people don't like to feel they are jumping the queue, but you are a young person with your life in front of you and the sooner this is sorted out for you, the quicker you can move on and, hopefully, put it behind you. Also, bear in mind, that it may be stopping you from working or looking after a family. These things are important too.

I hope you are able to get some answers and treatment if necessary.

Best wishes

xx Moy

[Amy2805 in reply to MoyB]

Thankyou so much for your reply that was extremely helpful to hear!

That’s exactly how it feels it’s all in my foot and calf. I’ve got scoliosis and my spine isn’t on the greatest condition which causes back pain but I can manage that. The MRI showed that my back would t be causing the strange sensation in my right leg so they do think it’s nerve related. £140 is extremely reasonable when I’ve looked can only find £240 prices. I know it’s the nerve conducive test that I need.

Can I ask what they said they can do with the nerve in Your foot please ?

Also you are right I’m only 33 and my little girl is 3 and a half and I can’t do the things she wants me too.

Thanks again

Amy x

[MoyB in reply to Amy2805]

I'm going to see the neurologist in a couple of weeks. I don't know if they will be able to do anything for the nerve problem or if it is something I'll have to live with. I was told by the person who did the test that it was within acceptable limits for my age, which means I probably won't have any treatment unless it gets worse.

However, at your age it cannot possibly be within 'acceptable limits' so there may be things they can do.

I did see a podiatrist first and he gave me insoles to wear in my shoes as he felt there was pressure on a nerve due to the fact that my arch had dropped and was causing me to walk badly. It seemed to help a little bit but the improvement didn't last.

I think we would undoubtedly have different treatment plans because of the difference in our ages so I really hope they find out what is causing your problem and treat it so you can get on with enjoying being a mum.

If the neurologist comes up with anything of interest when I see her, I'll let you know.

All the best,

xx Moy

[Amy2805 in reply to MoyB]

Thankyou so much o really appreciate all your help.

I have just emailed the spire healthcare to enquire about getting an appointment.

Good luck with the neurologist I hope they can help you further

Thanks again amy x

[MoyB in reply to Amy2805]

I'm thinking I may have got the price wrong. It could have been £240. I would need to go through my receipts to find out. Anyway, they will tell you how much it would be for you and you can decide if it's worth it. Xx

[Amy2805 in reply to MoyB]

don’t worry like you say I’ll find out soon enough. Thanks again I need something sorting now x

[Fnd_kiwi in reply to MoyB]

Hi MAy,

I am older as well trying to get help in the public sector is absolutely a joke right now. I left hopsital after months,unable to walk and still have never had an xray or exam of my legs . I have started having more neuro symptoms and they keep refusing to see me. so much for going to your dr for a referral when you have symptoms ...

[Fnd_kiwi]

do you have any hyper extending or joint issues ? I have alot of issues after leaving hospital rehab, turns out I had dislocations, hyperextending in knees, probably to compensate for the balance issues I had . it cause my archs to drop and rolling ankles.I now seem to have main issues with numbness in left leg and horrid prickly pins and needles , esp if im cold.

[MoyB in reply to Fnd_kiwi]

I don't have any joint issues to speak about - just the usual stiffness that comes with age - but I can relate to the pins and needles as I often get that. What I also get now is a sudden stab as though someone has jabbed me with a needle. This is in the foot that has the nerve damage but also, occasionally, elsewhere in my body. It's very disconcerting when it happens. It really hurts, but only for a second and then there is nothing to feel.

My neurologist is trying to find a cause for why I fall over backwards spontaneously. She is lovely. The other day when I saw her, she said, 'So really - you're fine, aren't you - or you WOULD be if you didn't fall over!' She's ordered some other tests to rule out a rare form of Parkinsons and is also ordering a tilt test to see if my blood pressure drops suddenly. I'm also due to have a Loop Recorder inserted to check my heart rate. She's leaving no stone unturned. Whether the foot issue is related to anything like Parkinsons - who knows? I am waiting for the tests to be done in the hope that they may shed light on what's going on with my body! xx Moy

[Fnd_kiwi in reply to MoyB]

im so happy you have found this person! that is how they all should be....invested in thier patients having a better quality of life.I know if i was a specialist i would not sleep at night if i didnt try to help findout what was wrong

[MoyB in reply to Fnd_kiwi]

She seems very committed to her patients. I also am fortunate to have an excellent and equally committed respiratory consultant. And, yes, I do know how lucky I am!There are still people out there who love what they do, but they seem to be few and far between these days, more's the pity. Xx Moy

[Fnd_kiwi in reply to MoyB]

that sadly does seem the current situation. I started seeing a chiropractor last week and it changed my life, seriously. he was so validating and he found within minutes that everything im experiencing is due to damage in upper motor neurons. he said it mist definitetly is not functional, as the hospital gaslit to believe it was. I never accepted that. I see a neuro physio tomorrow,

[MoyB in reply to Fnd_kiwi]

Thank goodness you found someone who's taken things seriously. Good luck with the neurologist appointment. Let us know how you get on. Xx

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