Sorry I deleted last post as it was very long. I’ve got to see Neurologist Again after having many MS like syptoms It was found I had a very low vit deficiency, I was treated with Desunin, and for nearly 2 years now I’ve been told by my GP that I have Peripheral neuropathy, I still have slight vertigo, terrible thigh stiffness, fatigue and my balance terrible. Does anyone get Peripheral Neuropathy plz.
Hi,
Peripheral neuropathy is not a symptom of MS. There are two different types of neuropathy: central (originating in the brain and/or spinal cord) and peripheral (nerve problems anywhere else).
MS attacks the brain and spinal cord, and so causes central neuropathy. This does not mean the neuropathy is only felt centrally - the feeling can occur anywhere in the body, but the cause is central - i.e. the nerves of the extremities are, generally speaking, OK, but they are getting “wrong” signals from the brain and spinal cord.
With peripheral neuropathy, it’s the other way round - the brain and spinal cord (central) are fine and sending good info, but something is wrong with nerves at the destination (peripheral).
It might help to think of it as different reasons a light won’t turn on. Has the bulb gone (the equivalent of a peripheral problem), or has there been a mains power cut (a central problem)? The effect is the same, but the causes very different.
Similarly with neuropathy - it can certainly be hard for the patient to tell which is which (if you have a pain in your foot, how could you possibly know if it’s the nerves in your foot causing it, or those in your brain?) But a doctor should be able to tell the difference, and a neurologist certainly should.
Have you ever seen a neurologist, and has it been confirmed that your neuropathy is definitely peripheral? Things like diabetes can cause peripheral neuropathy (I’m not trying to diagnose you - just picking a random example); things like MS cause central neuropathy. If it’s been established beyond doubt (preferably by a neuro) that your neuropathy is peripheral, that means it’s not a problem with your brain or spinal cord, and therefore isn’t MS.
Tina
Sorry - you do say “again”, so I realise that must mean you’ve already seen a neuro.
Thing is, did he agree with your doc the problems are peripheral?
Tina
i would not agree with this.
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I’m no expert but, as I understand it, neuropathies can arise either from a peripheral nervous system problem (the nerves that are distributed around our bodies) or from a central nervous system (strictly brain and spinal cord only) problem. MS is a central nervous system problem.
Alison
Hi, Thankyou for replies, I saw a neurologist in Feb 2013 with ms symptoms, I had a few blood tests and a head an neck MRI scan, the results of scan and bloods were ok, the neurologist said that I thought ms unlikely at the time but said he’d keep me on his books and would see me again if needed. I was back and forth to doctors with the same symptoms at the time were loads, numbness in left leg, pins and needles very strong in right arm and when I bent forward had an even more stronger pins and needles, vertigo, fatigue, drunken body balance all over place and dropping things ect. Anyway I was then sent to rheumatologist and blood tests again run and it was found my Vit D levels were extremely low and this was what was thought to be the cause of my syptoms, whilst being treated for the vit deficiency I did start to feel alot better but my feet started to hurt really painful when I first stood up, both feet the same and I started to get really bad nerve pains in lower legs and feet and pins and needles all the time, it doesn’t go away but I do have days when I’m not too bad and other days I can Beauly walk my thighs hurt down the sides, I’m loosing the feeling in my feet and my calve muscles have become very weak, I struggle to get upstairs and on a really bad day which can last aweek, I struggle to walk up kerbs, I trip and have hurt myself several times, my legs feel like weights and my feet when I first put weight on them feel like I’m walking on a pebble beach bear foot. Before I felt like this, after a hards days work in warehouse lifting extra my feet would throb (quite normal) Now I done feel that as the buzzing from pins and needles is stronger, my calves constantly twitch at rest and in bed they burn too underneath on the pressure points. ONLY a couple of GPS at doctors have said peripheral neuropathy, Not the neurologist, my appointment with him is September 24th same neuro seen before. I’ve had lots of bloods done at doctors, my vit levels ok, thyroid ok, liver kidneys ok, and I’m not diabetic either. However I do have crohns disease, and have asked a thousand times cud it be permanent nerve damage due the vit d deficiency, been told repeatedly NO, asked if it’s my meds for Crohns and been told NO. My Crohns consultant has said she doesn’t think this is linked or caused by my Crohns and she wrote to the Neurologist and he wrote to my GP saying he thinks I am suffering with a neuropathlogical disorder, and that he cudnt accept a direct referral from my crohns consultant but needed my Gp to send referral, which they did and I’ve now got my appointment date in September. I think they are fed up with me, I’m taking amitrptyline for last 2 years, helps me sleep but does nothing for nerve pains ect. My Gp wants me to try gabapentin but I won’t yet as I want to know the cause. I still get some Ms syptoms like vertigo, and I hate the heat makes me lightheaded and my balance still bad ect ect. Thanks
Hi tracie, I know you said you don’t want to take gabapentine until you know the cause, which I do understand, but gabapentine does help with nerve pain, and if it stops working as it did with me, I’m currently on pregabalin which is brill, currently 5 weeks and helping…minimum pain, unless I over do things, worth a try just to get some relief x x
hope you get answers from neuro soon good luck hun
heidi x
I agree, Heidi.
Also, Tracie, all information is useful information for your docs at the moment, and what difference gabapentin makes/doesn’t make to your symptoms might be useful information in itself. Please don’t feel you must soldier on when the meds might help you - it is not obvious to me that you are going to help your docs by staying in more pain than you need to be in.
Alison
Thankyou for replies
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Hi, I’m new to this, but I have had lots of issues, numbness as well as burning sensation in my back, which worsens if walking. Pins and needles arms hands and feet, also in the head, and hot needle like feeling in face. Also get feeling of numbness on breasts and thighs, my eyesight has deteriorated since Feb… Sometimes seems that things are superimposed… The list of symptoms is very long… Had a MRI brain scan and cervical spine, without contrast… That was 3weeks ago… I’ve phoned to chase results, and they are dealing with it… I’m a positive person, but I am struggling as I’m unable to work much, I feel like I’m such a wimp… Appreciate any feed back… And will post when get MRI result.
Hi Tree
You’ve put your new post at the end of an old post about Peripheral Neuropathy / MS. You might get more answers by starting a new thread, see the button marked ‘New Thread’, give it a title and then post your thoughts.
Meanwhile, it certainly sounds like you have some neurological problems. As to whether or not it’s MS, (which is the reason why I guess you’ve posted on here!) it obviously could be. But sadly as you know, you’ll have to wait for the results.
Do you have a follow up appointment booked with whoever ordered the MRI? Or are you waiting for a letter? 3 weeks seems like a long time to wait. If the test was ordered by a neurologist, then I assume you’ve phoned his/her secretary to get some answers. If ordered by your GP (which always seems odd since they can’t diagnose MS or much else that’s got a neurological cause but I know it happens), then you should just book an appointment with them and get a referral to neurology sorted.
If in fact you are waiting for a neurologist to give you feedback, 3 weeks seems quite long enough. In your shoes, I’d start by phoning the neurologists secretary or admin team. If they can’t help you with getting some answers / an early appointment with the neurologist, then try your hospitals PALS office. The acronym stands for Patient Advocacy and Liaison Service, see if they can hurry thinks up for you.
And try not to worry. I know that’s easier said than done but try.
Sue