Cervical neck Spondylosis with neurological symptoms - NRAS

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Cervical neck Spondylosis with neurological symptoms

diww1
diww1
80 Replies

I have many diagnosed health problems .. many like threatening and with distressing aggrevating symptoms .. but right now one of the most scary Is this ....

I was diagnosed with Spondylosis iny neck years ago by X-ray sadly in the past 10 weeks I've had pins and needles that started in my right hand then my left hand joined it, then intermittently my feet including soles and palms of hands

I had an MRI not of my spine or neck but for my head without neck for my blood clotting desease to see of if had a stroke and it was causing the pins and needles

Whilst having the MRI laying on my back my left hand got so bad with such severe pins and needles I could barely feel.it

Since then (2 weeks ago) I've had constant pins and needles in hands and feet occasionally face .. and pricking like stabs in my whole body

I am sure I've got a disc compressing my spinal chord ... I am waiting to see a neurologist

Due to some other illnesses and meds I can't take anti-inflammatory drugs and I know that's one non surgical treatment .. I also cannot have ANY surgery at all ...due to other conditions as I clot and bleed ... I can't see any future improvement.. if I have hot spine compression because I can't have treatment or surgical treatment

It is very distressing to have pins and needles 24 hours a day no matter what position I am in and up my arms at times .. it's very scary

I shouldn't of Google'd as it's scared ms about myelopathy and increasing issues including the risk of death

I am usually a strong person but it's so distressingly on top of other distressing illnesses

Anyone had non atop pins and needles without let up

80 Replies
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whaleroad

Hello. I started getting pins and needles in my hands nearly five years ago. It spread to my feet. It would come and go and then flare up sometimes for months at a time. I had nerve conduction tests, as my first rheumatologists didn't think I had arthritis and was sure I had carpal tunnel syndrome. I didn't, and the tests were normal.

Every time I saw a new doctor they would say "Sounds like carpal tunnel syndrome" and get me to bend my wrists to elicit symptoms, which of course did nothing because it wasn't carpal tunnel syndrome.

Because I had no continuity of care, I went through these motions about seven times. I could have screamed every time someone said "Bend your wrists like this, does it bring on your symptoms?". It never did. Because it wasn't carpal tunnel syndrome.

Nobody had any answers. I started to get really severe back pain and numbness in my back. My whole arm goes dead really easily. Once I stood up from a normal sitting position and fell right over because my whole leg had gone numb while sitting down without me even noticing.

Finally, earlier this year, my rheumatologist ordered an MRI of my whole spine. Like you, both my arms went dead just lying down for the MRI.

I finally got hold of the results and it showed bulging discs and disc degeneration at every section and one disc extrusion that is impinging on the spinal cord (at the spot where I get numbness in my back).

My GP referred me to the neurosurgeon and I waited and waited. I saw the rheumatologist in the meantime, who basically said it was a neurological problem and she couldn't really do anything but she could refer me to neurosurgery. I said my GP had already done that.

I finally saw the neurosurgeon, after six months of daily, agonising and debilitating back pain. He said there was nothing he could do for me, that operating on the extruded disc would likely paralyse me, and that any pain I had in my back was caused by arthritis and my rheumatologist should deal with it. He was not convinced that the bulging discs or disc extrusion were causing my symptoms.

I asked him what about the numbness and pins and needles? He said... wait for it... "Sounds like carpal tunnel syndrome. Try bending your wrists like this...".

🤯🤯🤯🤯🤯🤯🤯

So, I cannot really help you. But yes I live with pins and needles and no answers. It is maddening and I imagine in your case quite distressing. Hopefully the neurologist will have some answers for you. I asked my rheumatologist for some amitriptyline for the nerve pain, but I haven't actually taken it yet.

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diww1
diww1
in reply to whaleroad

Oh my I really feel for you .. I've read that often were told it's carpal tunnel and often it's not as in your case .. I know mines not ..

Do you get dizzy and giddy with it too

Are your pins and needles all the time or do they come and go x

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whaleroad
whaleroad
in reply to diww1

I don't have pins and needles all the time, but I do get some form every day. It flares up badly from time to time along with increased joint pain, so I'm pretty sure it is largely from inflammation. But the numbness in my back is from the extruded disc and I don't care who says otherwise!

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diww1
diww1
in reply to whaleroad

You know your own body and you know what's causing it

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whaleroad
whaleroad
in reply to diww1

p.s. I am having hydrotherapy for my back at the moment. I was getting quite depressed and just wanted a break from my body, just to remember what normal felt like. The weightlessness in water really is giving me some relief. Even for half an hour a week it is doing me good, mentally as much as anything. Would recommend it if you have the option.

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diww1
diww1
in reply to whaleroad

Glad it's helping sadly I am so giddy I can't go out at the moment .. I also have mobility issues it dkunfsoveky though

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diww1
diww1
in reply to diww1

Sounds lovely .. excuse typos

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WndCare
WndCare
in reply to whaleroad

I can consider you a boat mate.. as I have had the same cervical issues..I made my own appt with a pain management clinic and have had cervical methylprednisolone injected at 4 places right and left side... followed weeks last with ablation.. or burning of the nerve roots .... under light anesthesia..... it's gotten rid of all my symptoms.. no more migraines.... some numbness at the skin surface areas and tenderness at needle insertion sites but that's it..

I hope you don't smoke as that does not allow for healthy blood flow.. good luck.... boat mate!

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Agoodlife

I do understand how scary it feels. I do not have spondylitis and my symptoms are caused by a fracture in the second cerebral vertebra that is now pressing on nerves and threatening the spinal canal. When I got my first tingling symptoms I turned to my good friend dr google to find out more.Found out a huge amount of info and knew I had to find a good neuro surgeon. Had a lot of images taken scanner and MRI and x-ray of the neck. The first surgeon wanted to operate right away and gave me a 15% risk of paralysis. Did not sound right to me so I turned to get a second opinion of a well known neuro surgeon that gave me a correct diagnosis. The fracture was an old trauma probably caused by falling off horse that had worsened by age and degeneration. Yes it needed an operation but it was not urgent and done with microsurgery it would have minimal risks. To get the best treatment is not always easy. I need to travel to Finland to make sure, don’t trust the French any more after horrendous diagnoses and scare😳😱I’m waiting for the surgery and during the mean time I’m wearing a neck support to hold neck stable. Good luck, you really need to find a good neurosurgeon and one that has a lot of experience and the newest methods.All neurological back problems do not need surgery. Actually most of them should be treated for 6months with noninvasive methods before surgery is an option. Good luck👍

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diww1
diww1
in reply to Agoodlife

I am glad you've found someone you are confident in ..I hope it goes well when you have surgery ..sadly I can't have any surgery at all ..due to other illnesses and most medications aren't possible so mine will likely be un-treated and I know the risks and that's why I am so scared of it

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helixhelix

Sad. I have had better treatment in France then I had in the UK. Luck of the draw I guess.

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Agoodlife

This was one of the best neurosurgical hospitals that we had our first consultation. He was the only doc who had time ( here you need to wait REALLY long for specialists). He really did not explain anything and what made us decide for more help was when he told us he had never done the surgery that he was planning on doing on me and didn’t help us to understand.

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nomoreheels

I have cervical spondylosis & muscle spasms, directly related, have bothered me in the past, leading to pins & needles down my arms. I take pregabalin & amitriptyline which keep them in check unless I’m doing something different such as at the mo, I’m grouting a tiled floor so am having issues but I’m sure they'll subside a day or two after I’ve finished. In the meantime I’m wearing a collar in bed, a relic of the past when I had cervical spasm in the '90's, around 10 years before RD diagnosis.

It might be worth discussing your med options as surgery isn't an option, should it require that of course.

Neurological problems can be scary, especially if it's of unknown cause. As you're due to be seen by a Neurologist I'm sure they'll test to see where these symptoms stem from. I had med related neuralgia, carpal tunnel syndrome & peripheral neuropathy, confirmed by two sets of tests, one whilst on it & one once I’d stopped it. Thankfully gone now I no longer take the med. Flare ups can happen, usually self inflicted, but at least I’ve an idea what causes them.

Do keep us updated.

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diww1
diww1
in reply to nomoreheels

Yes it is scary as I have s blood clotting disease too .. and it started like my TIAs (mini strokes) do

I have been told it's likely not my blood disorder ..hence MRI of head awaiting results

Sadly I had pins and needles coming and going at that time .. now in about 10 weeks since they started they're 24/7 in hands and occasionally feet too

The prickly in body is a worry

I get a headache daily too and had and migraine last week which I've not had for a while

I am glad you know what yours is and you have meds to help

I definitely can't ever have surgery even if it's life threatening at any point

Many meds aren't possible with my warfarin too . That rules out many

is

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helixhelix

I have various issues with cervical spine - disc bulges, joint space narrowing, disc degeneration, erosions etc. And yes I have periods with constant tingling. However, for me it is largely controlled by physiotherapy (fingers’ crossed) and have just had three weeks of daily hydrotherapy/underwater massage/exercise that has put my spine into a good place. Do ask if you can have some non-intensive therapy.

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Agoodlife

You are SO lucky .Here I have tried ever since diaganosis to find real help from good physiotherapy and only found out that this is possible in my case to get from a MD specialist in re-education. The kines that you find everywhere are really useless. The help I need is one hr away and hope I will find when I come home fro my operation from Finland. These MD s are called Fysiaters in Finland.

When I read about my fracture and treatment of cervical problems There was a lot of info for doctors and pas about how to proceed and how and what and when non surgical treatments should be used. Unfortunately in my case I do need surgery. So I chose the least invasive procedure ( microsurgery) and the safest. Hope you can fix your situation👍

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helixhelix

Yes you seem not to have had much luck with your rheumies and treatment. A friend of ours broke 4 vertebrae in a riding accident last year and has had very careful treatment in Lyon. A lot of investigation and discussion before jointly deciding not to operate but to treat conservatively, so he spent the year in a corset and then months and months of physio. But is now pain free and fully mobile. So they can do it!

Hope the Finnish solution is the one for you.

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Agoodlife

Lyon is a good place. Had my knee replacement at a private clinic, as well as shoulder ( before RA) after fall with horse. The challange is to find a good doctor, and it has been really difficult.I found Lyon on the internet for these op.With a cervical spine op I don’t want to take any risks that I don’t need.to.

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diww1

I am glad your different treatments are helping

I will see what neurologist says it will be a long road as I’ve so many illnesses on top

I can’t have massage either as it can move any clots present they won’t do it with my clotting illness

I have a nightmare getting any treatments for any of my conditions as I have too many now sadly

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Longsider

Hi there, I can relate to your problems as I have cervical myelopathy , cord compression c4c5 which is fused and waiting for C 3 to be fused , what I would say is have a scan on your neck to be sure .

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diww1
diww1
in reply to Longsider

Now you had one fused did it stop the cord being pressed by disk .. I will end up having a scan I am sure sadly I can't have any surgery .. I've read about cervical myelopathy . And that's my concern .. how long have you had it and did you have similar symptoms .. how long was it from Symptoms starting to your survey .. I really feel for you x

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sharon6768

Just curious... Have you had any chemotherapy in the past? I have a friend who had chemo for endometrial cancer and has had pins and needles, neuropathy, pain, and problems ever since and now has to use a walker. Doctor says it's a side effect from the chemo that will not go away.

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diww1
diww1
in reply to sharon6768

Hi no I haven't ... I am sorry to hear about your friends effects of chemo .. I am sure this is related to my neck as it can be made worse depending on the way I move my neck it's always there but can worsen if I move my neck in certain ways and I have had spondylosis for years

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Cwendyn

This is awful. So much to deal with. I don’t know the reason why you are having pins and needles, so cannot offer any suggestions.

I did pick up on your neck issue and that you are unable to have surgery. I have a client in London that practices something called NUCCA. She is the only person in the UK to do this and people fly in from all over Europe to see her. It’s a specialism of the discs in the neck. It’s non surgical. She’s a medical doc too so knows her stuff. I’m not going to lie, it’s not cheap and will involve her taking a number of xrays first to see if it’s something that may help you. She’s not a quack or woo hoo fairy!

I’ve put the link here so you can read through it and see if you feel it could help you. nucca.co.uk/

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diww1
diww1
in reply to Cwendyn

Whilst I don't aim this info at any particular chiropractor .. I have always avoided neck manipulation although rare here is some information which would be wise to consider ....

Serious complications associated with chiropractic adjustment are overall rare, but may include: A herniated disk or a worsening of an existing disk herniation. Compression of nerves in the lower spinal column (cauda equina syndrome) A certain type of stroke (vertebral artery dissection) after neck manipulation.

If in rare cases it can worsen or cause a herniated disk or compress nerves or even cause a stroke it's a big consideration am X Ray doesn't show what an MRI can

No disrespect to your friend or any other chiropractor but I am very wary of any neck manipulation

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Cwendyn
Cwendyn
in reply to diww1

She isn't a chiro. Not as we know it in the UK. She's a neurologist and also a GP. I wouldn't suggest a general chiro

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diww1
diww1
in reply to Cwendyn

Ok but I did look up the link and it mentioned chiropractor ?

As I said I am not suggesting your friend or any other individual practitioner would fit the info I commented on its just something to consider for all of us before having any kind of neck / spine manipulation

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Cwendyn
Cwendyn
in reply to diww1

It does. But not as we in the uk know it. She’s American. Not my friend -she’s a client and thought of you when I saw your post. ❤️

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diww1
diww1
in reply to Cwendyn

Many thanks I appreciate it.

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diww1
diww1
in reply to Cwendyn

There are further contra-indications to chiropractor manipulation

Don't seek chiropractic adjustment if you have:

Severe osteoporosis

Numbness, tingling or loss of strength in an arm or leg

Cancer in your spine

An increased risk of stroke

A known bone abnormality in the upper neck

I have severe pins and needles and other neurological symptoms and diagnosed spondylosis plus I have TIAs with my blood clotting desease

I appreciate your suggestion and some choose to see a chiropractor .. but for me personally the risk is too great with my medical history b

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Cwendyn
Cwendyn
in reply to diww1

You've missed my point. She's not a chiro as you know them. She has amazing results and if she didn't think you were suitable she would say. She's not £60 a session either. Think I said before she's not cheap!

Up to you but it may be worth a chat with her as you never know, it might work 😊

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diww1
diww1
in reply to Cwendyn

I understand and as I said my comments were not directed at any particular person . Just general information

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Agoodlife
Agoodlife
in reply to Cwendyn

Thank you for the info. This is something I’ve been looking for. Have not found in France but will be useful for my daughter who lives in London.😊👍

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diww1

Ive read again and this treatment is chiropractic

It may be a different technique but it comes under the Umbrella of something chiropractors would do if they trained in this technique theres only so many ways a neck or spine can be manipulated

I am sure some feel happy to have this type of treatment but it’s not suitable for me as I have strokes already and have neck damage

Thanks for the suggestion I do appreciate it

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Witness2

Please don’t put off pursuing a diagnosis, however scared you are. I had exactly what you describe this time last year and developed myelopathy without even knowing what it was - everything I raised was attributed to my RA. I finally got diagnosed with a compressed spinal cord and told my life was ‘in grave danger’ and I was just weeks away from Tetraplegia. I had surgery in March. Yes, it was scary and painful but I am now feeling better than I have in the last decade. I dread to think what it would have been like to wake up one morning paralysed from the neck down.

Also important to know: the myelopathy symptoms you have had the longest are the slowest to resolve, if they do at all. I was given a 30-50% chance of recovery. So don’t leave this a moment longer. Go to A&E tonight!!! Good luck.

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diww1
diww1
in reply to Witness2

I appreciate your message and am glad you got help. .. I've been to A and E when the pins and needles started they wouldn't do anything they told me they'd write to my GP for a neurologist referral which is this month

I can't have surgery I am.in-operable so even if it's serious and life threatening for me it won't make any difference I can't have surgery I have other serious illness that prevents any under any circumstances

So that's why I am waiting for this month's appointment

The fear comes from knowing it could end my life

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Longsider
Longsider
in reply to Witness2

Hi there, glad you got sorted last year with your neck, I to have cervical myelopathy through a accident and was misdiagnosed for nearly 20 yrs with complex regional pain syndrome , mine came to ahead in 2013 when I was in last stages of it where it affected my bladder and bowel and had to have a operation c4c5 fusion but my symptoms are wide spread all over my body and unfortunately for me I need another op c3 fusion which will be early January as im having pre op 17 December , but what I will say is there are 3 stages 1 ,is hands pins and needles pain in neck 2 is twitching spasms , balance , falling, 3 is bladder and bowel ,on rare occasions like mine you might get to number 4, legs , and very rare death x

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Witness2
Witness2
in reply to Longsider

I’m so sorry to hear that. I was affected in almost all the ways you describe. My legs have almost fully recovered I’m pleased to say. The only symptom I hadn’t heard of was the twitching. interestingly I was told this problem is rare in RA; it doesn’t seem that rare from the 46 replies I received.

I was warned that I may yet face further fusion of my thoracic spine as the extensive fusion ai have had increased the load further down so I exercise and watch my posture - but que sera sera!Take care.

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Witness2

That is a dreadful place to be and I find it absolutely appalling that you’re being left in this situation. If it were at all possible to raise the c£250 fee to see the neurologist privately, I would urge you to do so. In my experience, no Consultant would leave you in this dangerous position and would probably fast track you onto their NHS waiting list.

I hear what you say about your medical history and all the contraindications but your situation could be made less life threatening if you at least wore a neck brace. I urge you to pursue something of that nature rather than believing nothing can be done to help you. Paralysis is a whole lot worse than making a nuisance of yourself until the NHS recognises your predicament.

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diww1
diww1
in reply to Witness2

I know what you're saying I will.persue alternatives but Is it not true that everyone's myelopathy is different

In the case of becomes.paralised at different rates time wise

I am seeing neurologist on 17 Dec

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Witness2

Oh that’s good, only 15 more days to stay safe!

You may we’ll be right about ‘different rates’ of myelopathy. My understanding is that the rate of deterioration is governed by the amount of pressure in the spinal cord. I’m no expert!

Do let us know how you get on. I hope you have a good consultation.

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diww1
diww1
in reply to Witness2

Thanks a lot I hope mine isn't serious x

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KellyInTexas

Are you on the Health unlocked Hughes Sticky blood forum?

I also have a very severe case of APS. I also have degenerative disc disease of the cervical spine.

It’s not fusing, Thankfully-however.

What I’m wondering is this:

*Are you under the care of a neurologist? It’s not uncommon to have dysautonomia.

You need to be checked for CIPD, for demyelination of nerves. ( I have this.)

*Dr Hughes told me that you can have a fluctuating balance issue- This is not a true myelitis, The blood that supplies the tiny little capillaries to the nerves coming off of spine can ,” sludge.”

I am currently on Rituximab for very high RF . We are hoping it will modulate the immune system and reduce the amount/ frequency of DVT’s I’m having despite a high INR. ( we are running it very high because I’m clotting so aggressively.)

Please have a look at the Hughes sticky blood forum.

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diww1
diww1
in reply to KellyInTexas

I am on that I was under Dr Hughes and saw him for years until I moved away from London . I'll look at your message again .. I feel for you a lot x

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KellyInTexas
KellyInTexas
in reply to diww1

I though I recognized your user name...

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diww1
diww1
in reply to KellyInTexas

👍

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KellyInTexas
KellyInTexas
in reply to diww1

Also please check under the APS pinned posts- we admin have an article on vitamins and minerals. Check your thyroid as well. The full panel, not just the TSH only.

Folate needs testing.

Vitamin d3 needs to be higher than normal patients- ghic’s website is good to follow- a paper on this was just released there. ( helps with not clotting.)

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diww1
diww1
in reply to KellyInTexas

How is your cervical. slinal effected is it wear and tear have you got disc compression into the spinal chord or is yours all linked to what you explain Dr Hughes says about tiny capillaries and sludge

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KellyInTexas
KellyInTexas
in reply to diww1

Cord signal is ok.

My discs are slipping and bulging and herniating. No ruptures. I see a neuro spinal surgeon. started in late 20’s)

Probably as APS is a “ connective tissue disease” , the connective tissue is compromised that holds the discs in place not to slip. That’s part of problem. Mri report ( before APS diagnosis) also stated - “ investigate for blood flow problem. I’m not sure what was meant by this.

I also have polyarthropathy.

As I have seizures, and did have when I was sent to neuro spinal surgeon- he did not want to do any kind of stable if surgery. He said learn what kind of movements make it worse. Don’t look up or down a lot- look straight- and sleep on a flat pillow, etc.

This has helped a lot. I’ve modified how I read, work, hold my neck.

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diww1
diww1
in reply to KellyInTexas

Bless you I can't look down either

So your discs aren't compressing the actual cord

They don't like operating on those if us with APS who have had multi clots do they

I've started to have bleeds too . The worst one I wasn't anticoagulated I was bridging after polyp removal

My INR was 1

Scary lost 41/2 pints blood

I am sorry you have seizures too

I really feel for you

Do you have any neurological symptoms too x

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KellyInTexas
KellyInTexas
in reply to diww1

Yes.

I’m sorry, I’ve had a death in the family- my sister passed away. Service is a week from today.

I’ve taken a short leave from the APS forum. I’ll be back soon. This is why I’ve asked you to post your question there- many have this also- the disc issues.

Trying to help family put a service together - I apologize.

I think you will find help on the APS forum.

Dr Paul Holmes - neuro on London- might be able to refer ( his Dept might be able to) . He’s very good with cerebral APS.

I clot aggressively as well as have neuro symptoms.

I live in Texas but have a few docs in London.

( my Texas team had a few questions so asked me if I would mind being seen at the London center. Hannah Cohen is also one my specialty heme consultant.)

So best of luck- I hope if you post your question on APS forum, someone might answer. A few have had spinal surgeries, and I know one is pending.

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diww1
diww1
in reply to KellyInTexas

Oh Kelly I am so so sorry about your sister

I understand totally and I will be thinking of you

Take care xxx

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diww1

Thanks I've had thyroid checked

I am on D3 long term have been for ages I was so so low

So what's your situ with you spine / neck etc

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Ern007

Hi, I am posting this to show you are not alone. I have three heart problems, CKD stage 3 and COPD. Had two X Rays, a CT and PET SCAN to see if a shadow on lung was cancer or not, not conclusive and have to have another CT SCAN in January as shadow is now in the other lung also... This is just to show you are not alone with serious health problems.

To your current worry: I have

Osteoarthritis cervical spine

Cervical disc degeneration

Read more

16 Mar 2015

Osteoarthritis cervical spine.

The latter two can cause problems, such as tingling, numbness and referred pain from arms to hands and worse in skull bones.

If you are likely to bleed (I am I take blood thinners) it is not wise to take Asprin, Ibuprofen or other NSAIDS,,

I take Dihydrocodeine along with Paracetamol for the pain AND - Gabapentin an Anti Convulsant for the nerve pain and tingling and numbness.

The cause on pins and needles maybe not be curable but can be controlled .

I do not know your circumstances and I am not a doctor, I am just pointing to my in some ways similar conditions to yourself.

Anyway good luck I thought I would post this to show with multiple conditions you are not alone... Do not consult Dr Google. he is a scaremonger. Best of luck hope you get relief,

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diww1
diww1
in reply to Ern007

THANK YOU SO MUCH .. I really am grateful for your message .. I also really feel for you .. I understand what it's like .. I don't use aspirin or anti inflammatory drugs I can't .. it's interesting that you have done similar juggling situ's

May I ask have you got nerve root issues due to cervical spine or cord compression

Do your pins and needles come and go

Are they in your hands or other places too

And do you have other neurological symptoms

It's scary that I started with pins and needles and in 3 months it's worse

Take are and thanks again x

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Ern007
Ern007
in reply to diww1

I have Osteoarthritis cervical spine. Long before I got Cervical disc degeneration - I got up one Sunday and could not see proper, i had weird feeling in my arms . I thought I was having a stroke and got a taxi to emergency GP. She said I was not having a stroke as reflexes OK - She said it was coming from my neck.

This was a few years ago and I got a condition called "Meralgia paresthetica " in my right thigh. This I have to take Gabapentin for, when it gets worse a severe burning sensation I get stronger drugs but it's seems under control.

I now get numb arms but the worst by far is tingling in fingers - I assume that comes from my neck as I have Cervical disc degeneration - I think that would be caused by compression.

As for neurological symptoms yes I get pain in back skull and go dizzy, common with neck I think.

The pins and needles come and go the numbness is every day. Hope this helps// Take care.

EDIT: If pins and needles get worse - be seen by GP, it is a valid reason to ask to be seen.

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diww1
diww1
in reply to Ern007

I really feel for you I am similar but at the beginning compared to you I think I really empathize pins abs needles all the time amongst others is hard to deal with all the time do you learn to cope with it every day I've got other aggrevating symptoms from other illnesses too but the pins and needles stabbing burning and numbness and prickling drives me mad at times

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Ern007
Ern007
in reply to diww1

Oh I get numbness all the time, pins and needles I get daily and I believe is coming from neck. I get as I said burning and numbness in my right thigh, not sure why but it's there constantly. Like you I have many ailments and lots of medications and they can contribute. For example poor circulation can cause cold feelings on skin or muscles,. and other symptoms. Another thing i get is a constant itch in on my upper back, I have OA in arms and can't reach, drives me stupid and I can't reach, when desperate I have to ask my better half to scratch....I really know where you are coming from .

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diww1
diww1
in reply to Ern007

I empathize totally I really do .. I know what it's like to have many thinks that are distressing with aggrevating and worrying symptoms .. keep fighting ... And thanks for helping me

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Ern007
Ern007
in reply to diww1

Welcome and I wish you well. Let us know how you go on. Yes thank you, I will fight - We have to do. Take care,

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diww1
diww1
in reply to Ern007

Saw GP today I am being sent mad with the constant pins and needles he said I have to wait to see Neurologist now I've been called for an MRI for something I had a CT on .

Not my neck .. how do you cope with 24/7 pins and needles so yours ever go

Mine are in hands and feet 24/7 plus other Neurological symptoms

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Ern007
Ern007
in reply to diww1

Medication helps me to a degree . I wonder why you have not been given anything to try and help? So many causes can cause such tingling. Hypothyroid, Medication, Fibromyalgia, Cervical spondylosis, Lupus and even Rheumatoid arthritis and many other reasons. ...Don't take that as a diagnosis, just some possible causes from Auto Immune to infection. to medication .. Lets hope your MRI finds the cause then you can get some treatment. .. I had a CT Scan which showed something and had to have a PET SCAN - Now the PET SCAN supposed to see more just confirmed the CT SCAN - Now I have to wait 6 weeks and have another CT SCAN......Back to you, I get tingling in hands, and arms sometimes - I also have a 24/7 itchy back and at times other sites. Drives me potty as I can't reach...Let me know if your CT scan finds a cause, I really understand your frustration. I am not as bad as you, but not far away with numbness and itch and tingles.. I wish i could help more... keep chin up scan should find the problem.

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diww1
diww1
in reply to Ern007

Thanks ... I guess they've not given me anything until they get the full picture

I will have to see what unfolds

I am so glad your meds help you that's great x

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Ern007
Ern007
in reply to diww1

Good luck with scan. I hate them because on the contrast dye, meds help quite a bit but, this itch is 24/7 and nobody does anything, they listen then say nothing, Frustrating....

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diww1
diww1
in reply to Ern007

Thanks so much .. it's such a shame they can't help you with the itching

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Agoodlife
Agoodlife
in reply to diww1

Do you have the pins and needles on your arms.

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diww1
diww1
in reply to Agoodlife

Not really pins and needles in arms .. hands feet and palms and soles the palms and soles and feet are intermittent .. I have prickles like thin needles stabbing in arms and legs intermittently .. I am giddy intermittently and headache most days

It's all worsened by laying on neck

GP said yesterday it sounds like cord compression seeing Neurologist on 17 Dec

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marvalusxoxo

Well I also have the pins and needles on both hand and occasionally go down to my legs. My neurologist said the same to me ..it is carpal syndrome but then my rheumy said that it was actually being caused by the inflammation in my hands and the neurologist dis say that I had nerve damage on both hands. I truly hope that the doctors find real solutions and a medical treatment that best suits you. May the good Lord in heaven have mercy on you.🌹

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diww1
diww1
in reply to marvalusxoxo

I am sorry you have pins and needles too

Have you got spinal cord compression in your neck causing it

I have lots of symptoms GP said yesterday it sounds like I've got cord compression

Do they know what caused your nerve damage

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Nessa28

I’m sorry to hear this . Like wishbone I also live with the pins and needles in my feet constantly for past 28 years . I also have in my hands again I’ve been tested for carpol tunnel funny enough back there again for another conductivity test which last time was a no . I have degenerative discs lumbar spine that are inoperable and I was told I would always have this symptom as it’s nerve compression . I don’t have it everyday but add it to the bilateral sciatica I have it’s a total annoyance . You do get used to get and they can prescribe medication such as gabapentin or lyrica to help with it . Wishing you well 🌷

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diww1
diww1
in reply to Nessa28

Thanks very much for your reply

. It's definitely my neck as it gets worse depending on the position of my neck

I am waiting to see Neurologist on 17th DEC

I am just worried where I'll end up as nowhere is good to be compressing cord but necks really not good.

I can't have surgery due to other serious illnesses I wouldn't survive it

Some drugs interact with warfarin but I think there maybe some .. what does gabepentin do to help us?

Do your pins and needles fluctuate in intensity depending on your position

I feel for you 28 years is a long time

I've had double siatica too mine comes and goes thankfully

I do wonder of I've more than just my neck compression I am waiting for Neurologist to see by MRI

I got much worse after MRI of head a few weeks ago it has never improved after that .. its much worse

My left hand went dead and was before that full of such powerful pins and needles just laying in the MRI scanner and the giddiness was horrendous i.had to sit in the MRI Bed for about 5 mins

I couldn't get up far to giddy

It's very frightening and is talking its toll emotionally and physically I am so so tired I can't sit up for long each day

I admire you for coping x

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Nessa28
Nessa28
in reply to diww1

I do understand initially I just had hip pain then the sciatica . I only had a prolapse in L3 but the nature of the beast L4and L5 and LS1 are prolapsed now but L2 is stable lol . I find I have to keep moving or it ceases up really quickly and that causes more pins and needles . I have terrible creaking and cracking in my neck and I think this is why I having this test again today prior to surgery on my hands to check it’s not my neck that’s starting to cause nerve pain . I can’t imagine how you must be worrying about your condition .,especially if you can’t have any surgeries to help with any of the conditions . Please can you enrol in a group to do seated exercise the reason I say this is getting some movement will help , you will socialise and the awful darkness everyone of us who has a long term condition has will have little chunks of light . You must live as well and as best you can . This forum is amazing place to vent and ask for advice . However I know that having been told what you have must be taking an enormous toll on you mentally , so for your well being love yourself , admit to being scared but voice it to the doctor and make him realise that your wellbeing is holistic not just physical . I so wish you well , put on some music play it loud and belt out some notes . Let us know how you get on🤗🌷

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diww1
diww1
in reply to Nessa28

Thanks so much I am scared I have a few life threatening issues. With other Illnesses and this is the worst possible worry I know where it will eventially lead. Because I can't have surgery .. I am also.facung another massive health scare on top at the moment too that may turn out as bad and if so I can't have surgery for that either

I think any chair exercises would have to be at home .. as I am also immobile due to arthritis in my knees I can barely walk as it is with that

I sit in my same.place every day and can only just get to the bathroom and even with that I have to budget how many steps a day I do then I am screaming in pain and can't walk without knees collapsing and now ankles

I have carers in and have been housebound years so it's very hard right now

I had a CT and MRI not of neck or spine. CT was head only and CT everything but arms and legs and they be called me for an MRI of pelvis so obviously CT saw something

I am very worried because I am post meanapausal and gave a large ovarian cyst it's been scanned by ultra sound but I don't know if the MRI is specifically to look at that it's 6cm x 5cm x 4cm said to be a some cyst but it won't be a normal functional one with being post meanapause .. it was found by accident / by chance 1 1/2 years ago just after I started 96 hot sweats / flushes a day also not meanapause related so it's all a huge worry .. my Ferritin is also through the roof ... I wasn't told for over a year about that .. I fear ovarian cancer to be honest on top of my neck and Neurological symptoms

None can be operated on so that would be the end of the road for me

It's hard not to break under this much pressure x

I've had three years of such trauma too it's not the icing on the cake or he cherry on top at all

I've had three rectal hemorrhages and pneumonia and my gallbladder land me in hospital twice (it needs to come out but can't have the surgery)

Two rectal hemorrhages they don't know why cameras showed nothing but first one polyps which I had removed and that caused secund and worst hemorrhage I lost 4,1/2 pints .. so it's been a traumatic three years

We also lost our beautiful dog he was 12 but it was a shock how it happened suddenly.

So the past three years have been enough for me ..now the pelvis MRI and neck cord compression and we also had news this week that my husband has more health issues

It's like buses 🤣🤣🤣

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Nessa28
Nessa28
in reply to diww1

Oh my what a terrible time you’re both having . Has OT been to your house , you must be climbing the walls . To loose your dog as well is terrible as they are a constant in our ever changing world . There is absolutely no point in telling you not to worry as you will that is natural and with your husband being poorly as well you are having a rotten time . Try not to over think the best thing that can happen is you sing the neurologist as he can prescribe medication that will help with nerve pain . Can you get out of your house at all by wheelchair is there local group you can join be good for the both of you even if it’s a hour a week , find out exactly what is happening in your locality and whether some volunteers come in even if it’s for a natter you are off loading . If not please off load here we will all listen . My motto for every day especially this year as it has been particularly awful Is lord help me to remember that nothing is going to happen today that you and I can’t handle . It’s helping me to count my blessings . I’m sending you massive hugs thinking of you 🤗🌷

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diww1
diww1
in reply to Nessa28

Aww thats so kind THANK YOU, We have a very strong faith and that is what holds us together and helps us endure it all, I still have 48-96 hot flushes a day (in each 24 hours) never any let up trying to cope with those alone is enough, the more I drink the more I need to go to the bathroom and that is another walk which are limited I can only walk so many times a day so I don't go in other rooms often, I rarely go in the kitchen at all for weeks at a time sometimes, its very hard but each day we wake up we are happy to be alive, Life is Life no matter what or how hard the struggle its precious.

I wish you all the best for your tests for your hands please let me know how you get on xxx

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Nessa28
Nessa28
in reply to diww1

Thank you 🤗

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Agoodlife
Agoodlife
in reply to diww1

Did you have the contrast when taking the the MRI?

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diww1

No but I only had a head MRI am waiting to see neurolgist on 17 Dec and I am sure he will send me for an MRI of neck and spine

The MRI I had 3 weeks ago was head only not neck on that one that was to see if I've had any more clots in brain with my clotting condition

I had contrast with CT but that was whole body looking for cancers

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