Hi I am new to this forum and am feeling really scared and would really like some advice. I’ll try and keep it short but here we go. In October 2014 I felt altered sensations on the back of my left shoulder. By The end of January this had turned into a painful sunburn sensation over the back of both shoulders. I went to my GP who advised me it sounded like nerve pain and prescribed Amitriptyline 10 mg a night. She also referred me to a neurologist but advised me it could take up to 3 months to be seen. So because I was so worried in the meantime I consulted a private neurologist who examined me did reflexes strength tests etc which I passed. He advised me that I should have an MRI scan of my brain neck and spine which I did and it came back completely clear. So clear he said he didn’t advise any other tests. So I decided to wait until my NHs referral came up which it did in March. By now I had this burning sensation in splodges all over me. I saw a second Neurologist who read the MRI report examined me and said that 100 per cent I did not have MS or these other neurological disorders I’d found online. He said I am suffering from anxiety and stress and referred me to pain management he called it a somatic disorder. By just a stroke of luck I received an appointment for another neurologist at a different hospital. He again read the MRI report examined me and said I had nothing neurological wrong with me and said I was heading for a breakdown so he referred me to a psychiatrist… I might add that I’ve also had blood tests in January and in June and they all came back clear except an ESR is slightly raised (16) but my GP was not concerned. By now I also had skin hypersensitivity a weak feeling in my wrist and ankle on the same side. I also now have numbness on the first two toes on both feet. Went back to my GP who has re reffered me back to the private neurologist but on the NHS. That appointment is not till November. I went back to the private neurologist who I told about my different symptoms but after examining my feet he didn’t seem concerned. He said he would see me next in November. He said I wasn’t fitting into any neurological category. Please please could someone advise me WHAT TO DO NEXT AS I AM SO DESPERATLY WORRIED. THANKYOU.
I’m sorry you’re not going to like this answer, but you cannot “do anything next”, as medicine is based on evidence, and at the moment, you don’t have anything like enough evidence to support a diagnosis of MS, or any other neurological illness.
Unless new evidence emerges, repeatedly pressing for answers to the same questions isn’t going to generate different answers.
They cannot simply “change their minds”, if you are persistent enough - there has to be some reason to look at it differently - which would include an abnormality being found on MRI or in the blood tests - which, so far, there hasn’t been - other than the slightly raised ESR, which is NOT a hallmark of MS, or usually anything serious at all - and can be triggered by as little as a minor infection anywhere.
I have to say it is not at all typical of MS to have any symptom “all over you”. The explanation can be found if we take a look at how MS symptoms arise - they are caused by damage to parts of the central nervous system (brain and spinal cord). The symptoms depend on the location of the damage - which is random, but not “everywhere” all at once, and certainly it’s difficult to imagine such widespread damage, but none of it at all showing on MRI.
So whilst I have no medical background (other than my own experience as a person withi MS), my gut feeling is what you describe doesn’t fit very well with MS at all.
I would recommend you accept the referral to the psychiatrist, on the basis that (i) there’s no concrete evidence of anything else being wrong, so they might just be right - if they are, it could help, and (ii) You will have shown a willingness to explore every avenue, so if it doesn’t help, you’ll be able to say: “At least I tried!”, and not be accused of closing your mind to alternative possibilities.
If you don’t go through with it, you will always fall under the shadow of: “Well, we still believe it’s psychological, but as the patient declined to pursue it, we couldn’t get any further with that!” What do you have to lose? Either it helps (Great!), or else the psychiatrist concludes: “Absolutely nothing wrong that I could find - sorry, not my patch!”, which would mean you’d effectively closed one line of enquiry, but strengthened the case for keeping others open.
If, for the sake of argument, it was MS, it’s certainly the case that the truth will out eventually - whether you do anything, or whether you don’t. However, given that it doesn’t seem a very close fit - at least so far - I certainly recommend keeping an open mind to ALL possible diagnoses, and anything that’s on offer to help. Worst that can happen is it doesn’t work, but then you are no worse off, and have perhaps narrowed things down a little. What doesn’t work can sometimes be as informative as what does!
I did the exact opposite. I got on with life & when I felt odd. Got different advice every time I spoke to a GP. Walked like a drunk for a few years until I collapsed. Then I got back up & carried on. Eventually I couldn’t walk. Got referred for an MRI, spinal tap, steroids, blood tests & so on on. Then told I have MS. Now I refuse to go in a wheelchair & just keep stumbling. Shaking, cramping, creaking, squeaking & telling the specialists I don’t have MS. Guess what? Like Tina states. The proof is in the pudding. Be healthy & crack on.
Hi Thankyou for your speedy replys. I did go to see the psychiatrist and am now on a waiting list to see a councillor. I also
went to the pain management which after reviewing me I am on a waiting list as they have referred me to a pain clinic. As I am now on 40mg of Ampitripiline they feel they can put me on a better medication, but I don’t yet know what that will be. I am in a lot of pain with the burning sensation on my back and down my shoulders. To put clothes on is uncomfortable to lay on my back is uncomftable. When the burning comes in other parts of my body at the same time I. E arms legs it is also painful to wear trousers. When the intense burning subsides slightly then comes the tingles on my back down my arms odd places like my toes wrists face and hair. I also get the creepy crawley ant sensation creeping all over me. My bottom left eyelid has been jumping for the last 6 weeks. As I can’t go out naked I just have to injure these sensations. But what really doesn’t help is the fact that none of these symptoms are visable so I have great difficulty in getting support even from my own family. Yes I am a worrier and a very anxious person but I am in a very lonely scary place at the moment and don’t know how this is going to end up. I don’t mean to upset anyone or suggest that I’m not open to anything that may help me but as I said I’m very very lonely as it seems the only thing I can do at the moment is put up and shut up. I just really wanted some advice and as I said am open to anything that may help me. Since this started in October the symptoms have got worse and worse. I don’t suppose worrying or feeling scared is helping but I cannot suppress these feelings no matter how hard I try. Just very frightened and scared as I don’t know what’s happening to me or why. Thanks for taking the time to reply.
Hi I also understand that MRI is only 95% accurate and it can be negative in the very early stages of the disease. These facts ( confirmed by a neurologist) is what is making me so worried.
I can only reiterate what I said before, which is that the “all over” symptoms don’t sound much like MS to me, and it would be very odd if you had such apparently widespread neurological damage, yet nothing visible on MRI.
I’m glad you decided to give it a go with the psychiatrist, and also to accept counselling, in case this does turn out to help. Amongst other things, the counsellor may be able to help you deal with uncertainty, and not jump straight to “worst case scenario” for everything you don’t have answers to.
The simplest explanation of why you don’t have any lesions visible on MRI would be that you don’t have MS! So I think you need to keep hold of that fact. Of course, you wouldn’t be human if you didn’t occasionally think: “But what if that’s wrong, and I really do have something sinister that for some reason isn’t showing?” I’m sure we all have those kinds of nasty “What if?” thoughts, whether they’re about health, or something else altogether. But the important thing is not to let them get the upper hand.
A clear scan is much better news than one that found something, so try to focus on that, and not on the: “What ifs”.
I’ve never heard the 95% accuracy figure stated that way before, but a 95% probability you don’t have MS has to be a good thing, surely? It means it’s very unlikely, so probably the best thing you can do is to persevere with the explanations your team think are more likely.
I’m not promising talking to a counsellor will bring overnight miracles - but if you did begin to feel better after trying it for a while, perhaps it would reassure you nothing sinister has been “missed”?
A lot of things have no easy answers. I think we expect to go to the doctor’s and be told: “Oh yes, you have this!” on the spot, but a lot of medicine isn’t like that - often it’s painstaking evidence gathering, and a process of elimination. You (and your doctors) have to be guided by where the evidence is pointing, and at the moment, it’s not pointing strongly to MS. That does not, of course, mean there’s nothing wrong, but does mean the explanation is probably something else.
You don’t have ms(I’ll bet my life on it) and are searching for something that doesn’t exist. Please get some psychological help and I think you will feel better
Thankyou Kat for taking the time to reply. As with Tina I feel more reassured. The tingling and burning has been really bad today. I’ve noticed the tingling is really bad if I wear something close to the skin, except strangely a bra I have also had lots of twitches and odd sensations under the skin. My calves constantly have the feeling of butterflies under the skin. I am attending a workshop for anxiety next Thursday. Then I have to wait 5 months for the one to one sessions to start. As I said before I am more than happy to accept any advice or guidance that may help. Goodness knows what is going on with my nervous system. But one thing is for sure this is not body I had this time last year and of course as anyone would be I am very very worried as to how this will end up. Thanks again for your reassurance.
Hi I don’t know where my other message regarding when I had my MRI scan ended up (sorry new to this) but as I can’t see it in this thread I thought I’d add it on. When I had my MRI scan at the end of Feb I only had burning on my back (top of shoulders) and my lower spine. By March it had appeared in areas all over me. That’s why I was worried maybe I had had the scan too early. As I mentioned earlier I now have weakness in my right wrist and right ankle tingling down my arms legs toes even face and I have this strange popping sensation on the bridge of both feet gowing toward my big toe and second toe on both feet. These are the toes that also feel numb. Bizarrely all the hairs on my arms seem to be sticking straight up and I also have hypersensitivity on my back and both arms it’s. Also my left eyelid is constantly twitching although been to opticians and he said all the nerves in my eyes look healthy. There are times when I can actually feel nerves under the muscles twitching I think it’s called fascinations. Still so worried what’s gonna come next. I know I’m not helping all this by worrying but I can’t help it.
Thanks for taking the time to read this.
You hit the nail on the head right at the end - you know you’re not helping all this by worrying!
There’s not a thing you can do about it either way. I still very much doubt you have MS, but IF you did, it would get diagnosed in its own sweet time, which would be when there’s sufficient evidence - i.e. not now!
In the meantime, it does not make sense to ruin your life with “What ifs”. Enough trouble comes in life, without constantly looking for it.
You could get run over tomorrow. You almost certainly won’t, but you could. Are you obsessing about that happening, or about any of the other countless unpleasant possibilities that might happen, yet probably won’t? You would literally not be able to get out of bed in the mornings if you worried about every “What if”.
Do something nice for yourself - go somewhere, do something, get a new hobby. I don’t know if you are working, or in education, or whatever, but it sounds as if you desperately need some kind of diversion. If you get engrossed in something enjoyable, you won’t have so much time for “What ifs”.
To be honest, I probably wouldn’t say much different if you’d actually been diagnosed. It’s an uncertain illness - not a death sentence. Life doesn’t just stop on the day of diagnosis. You have to learn to make the best of it, and not spend every day worrying what tomorrow will bring.
I’ve been diagnosed five years (probably had it much longer), but nothing’s happened yet I couldn’t cope with. And needless to say, I’m not dead, or I couldn’t be here discussing with you about it!
Hi Tina thanks for replying to my message. I know I should divert my mind to something else but it is so so difficult for someone like myself. It’s almost an illness in itself. I know in a previous message you said you were an anxious person but you can obviously control these feelings way better than I can. I’m so hoping when I go to counselling I can learn how to be more positive than I am because my worrying is making not only my life a misery but also my families. My husband is completely fed up with it and also is my daughter and my friends.
When I went to the pain management session I saw a physiotherapist a psychologist and a nurse. I saw them all seperatly and the physiotherapist asked me what tests could be done that would convince me there was nothing sinister and I answered I really don’t know because until the symptoms go I will always worry about the cause. They have concluded after all meeting together that they feel my central nervous system has got stuck on “red alert” and it’s causing this chronic pain and other symptoms. This does make sense, and I sincerely hope they are right. Just trying to convince myself of this is difficult when you hear about doctors making mistakes all the time.
Anyway I got no choice but to just get on with it. Just wish I could convince my nervous system of this. It’s probably why the hairs on my arms are standing upright. But believe me I have overcome major difficulties in my life and I will get through this that I know. Just wish it be sooner rather than later.
Thanks for taking the time to read this.
Also I might add that the burning is very very painful and the tingling and creepy Crawley feeling is awful. So difficult to be positive when you are feeling these sensations ever single day. The burning has stayed on my back constantly but the burning elsewhere comes and goes. Thanks again for taking the time to read this. I can’t afford private counselling and I work part time.
You’re dead right again - anxiety IS an illness in itself, and could well be the explanation for ALL your symptoms. Don’t underestimate the power of the mind to generate physical symptoms.
No, I can’t control things “better than you” - you should see the flap I’m getting in over on the other board, just because a penpal would like to come and meet me! Something most people would think of as a lovely opportunity for a nice day with a new friend, but I’m in a total panic about.
So you haven’t got a special type of anxiety nobody else can possibly imagine. Mine is not about health - at the moment. In fact, knowing I already have something serious is one area where I don’t really feel I need to worry, because “the bad thing” has already happened! I know having MS doesn’t make me immune from anything else serious, but it kind of makes me think I deal OK with being ill, if that makes any kind of sense. Crazy logic, I know, but you don’t have to worry any more about what’s already happened. Instead, I worry about stupid things, like meeting someone I don’t know.
But whatever form the anxiety takes, I know it can’t be allowed to rule my life. I have forced myself to say to the penpal: “Yes, we can meet.” Whether it will happen or not, I still don’t know, as I’m not sure she realises how far the journey is, but I’ve had to confront it, and tell her: “OK, yes”, otherwise life will just stall, and I’ll never agree to anything.
And your predicament is similar - your whole life is stalled, obsessing that you might have MS, when the medical evidence doesn’t support it, and you could be achieving so much else instead. You are actually making yourself sicker, and I do think you know it.
I suggest returning to the GP, explaining how the anxiety is crippling you, and seeing if they can (a) chivvy the counselling along a bit, or (b) consider prescribing anything for anxiety.
I don’t know what else to suggest. I’m not at all convinced you have MS - your doctors don’t think you have MS. So what can folks on an MS forum really advise?
Don’t get me wrong, I’m not saying you’re not welcome here - I’m just not sure what else we can come up with, other than: “Wait and see”, and: “Try not to jump to conclusions.” Have you considered joining a forum for anxiety?
It wouldn’t mean you couldn’t still post here, but perhaps you’d get more practical tips on anxiety-reducing techniques other people have found useful?
I havn’t read other replies but expect Tina has given great advice. MS and other such as ALS ( motor neurons disease) are top on the list for anxiety suffers because one can have ms symptoms that a very similar or the same to ms. However ms often requires for something fairly certain to come up i.e optic neuritis, weakness, numbness ( unable to distinguish between hot/ cold). Vague sensations all over generally aren’t ms and if they are something will come up that is concrete. But in your case I doubt this will happen. You have as much chance of ms as anyone else in the future.
I will pm you a thread I found on an anxiety forum about ms and anxiety . It is fantastic.
Best of luck to you x
Hi Highandlow Thankyou for taking the time for reading and replying to my post. It would be great to join an anxiety forum and would be really grateful if you could advise me which one to join. As I said in a previous post I am really new to this and appreciate any useful tips or advice which anyone could give me. Thanks again.
Hi Tina Thanks for all your advice. The second NHS Neurologist suggested to my GP to put me on two anti depressants… Fluroxitine and Diazepan. My GP advised me against Diazepan but said I could go on Fluroxitine but I would have to stop the Ampitripiline. I cannot do this as they are controlling the pain to a degree which in turn makes me less anxious when I am in less pain. The same Neurologist is the one who referred me for counciling and I can’t get past his secretary to ask him to hurry along my appointment with the councillor. (Sorry for the spelling mistakes)
Its funny because I would welcome meeting up with a penpal (if I had one ) I love meeting up with new people, everyone always has a story to tell and I love finding out about other peoples life’s etc Guess I’m just nosy.
Hope it all goes well x
Forget Dr Google - listen to Tina!
One thing worth checking is easy - have you changed your laundry detergent?
Some people have skin that is very sensitive to such changes, and your description could be a severe allergy rash.
in fact, it could be almost anything apart from the laundry.
Could be worth raising this point with the professionals.
Hi Geoff ,Thanks for replying. No I definetly know its not my detergent used the same for years. Also there is no rash and the burning and tingling is on places where clothes don’t even touch. I’ve had a terrible meltdown today cos I got up felt the burning on my right arm that has the weakness in the wrist and ankle and also terrible burning across my shoulders its now beginning on my lower legs. I started panicking and now it’s all over me. My right bicep is also aching and feeling weak. I know one thing is for sure the more of a state I get in the more burning and tingling I feel. Gonna go and sit in the garden and try and calm down. Thanks for reading this.