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New here with possible symptoms

New diagnosis and before diagnosis
#1

Hello,

I’m 27 and I have been suffering extreme fatigue for a number of years with few answers, bar a doctor being close to labelling me with ME. Then I was diagnosed last year with the gynaecological condition endometriosis and was given treatment (hormone-based) for that and my fatigue is much improved. I was sleeping around 14 hours a day and now I sleep around 7-9 hours, although I do tire easily. When I am tired, my arms feel heavy but floaty, and I feel like that just before I get ill too.

Then in September, a recent back pain/sciatica problem seemed to reach a climax, and my left leg went numb and I had a patch of extreme burning sensation on my back so I was admitted to hospital on an orthopaedic ward as they thought I had Cauda Equina Syndrome, but a lumbar MRI ruled that out. I was told I had a couple of slightly prolapsed discs in my spine, but not enough to cause my numbness or the shooting pains that I also get.

I had hydrotherapy and my left leg improved slightly, but was still numb in patches (my outer thigh) which has subsided to weird sensation. If my boyfriend strokes my leg or if I brush past something and am not expecting it I get a really odd, undescribable sensation in my leg. Also, I often get muscle twitches and tingling in the same area, and half of my big toe often goes numb, or has shooting pains or feels like there is fluff tickling it when there’s nothing there. I also get similar numb, tingly or heavy feelings in my left arm but not as bad and not as often, with the same feelings as my big toe happening in my thumb. Sometimes when I am walking, my left leg gives up mid-stride, and I drag my toes on the floor, but that always goes straight back to normal in the next stride. A recent symptom over the past few days is that the same area of my left thigh keeps feeling as if I have sat on something wet, but if I touch it with my hand it’s bone dry.

I was initially very worried, but my GP has told me numerous times (without my prompting) that it doesn’t sound like MS, but other than that he is stumped. I have had to stop worrying (quite successfully), and I’m getting on with my life as well as I can, which is generally very well. I have been taking Trazodone since around January, and that does help a lot with the pain, but hasn’t stopped my left leg troubles. I am probably going to start taking Gabapentin next week to see if that helps and he has referred me to Pain Clinic. He doesn’t seem to think a Neurology referral is appropriate, which I don’t quite understand since I am sure that there is something weird to do with my nerves happening. I don’t really understand how a GP can say with a lot of certainty that he’s sure it’s not MS, when looking at possible symptoms, I do have quite a few (some I haven’t mentioned here) and with it being so difficult to diagnose.

Any feedback would be appreciated, particularly reinforcing or contradicting my GP’s certainty that it couldn’t be MS.

Thanks

R

#2

Hello and Welcome,

Some of what you describe could be MS, but maybe not. I would urge your doctor to give you a referral to see a neuro.

Sorry I’m not that much help but wish you luck.

Janet

x

#3

Hello R,

I’m sorry I can’t give you the needed reassurance that this couldn’t be MS, as a lot of it sounds awfully familiar (I am a diagnosed person!), but at the same time, it’s important to remember similar symptoms can be caused by a whole host of things, some of them quite benign and treatable, so you shouldn’t jump to the conclusion it’s necessarily serious.

One thing’s for certain, though: you are never going to get diagnosed, or get suitable treatment, if your GP stubbornly refuses to refer you.

I agree with you that your problems seem neurological, and therefore that a Neurology referral is appropriate. Like you, I don’t really understand your doctor’s reluctance. It seems ridiculous that you could have problems to the extent of being prescribed gabapentin, but without any further investigation into what’s causing them.

Some GPs seem to have a misguided belief they are protecting their patients, if they don’t refer them for tests they would probably not like the answers to.

But an MS diagnosis - even assuming it were that - does not carry the same stigma and disadvantage it may once have done. For a start, discrimination on grounds of an MS diagnosis is illegal, in most aspects of life. Yes, there are one or two area where it might cause problems: for example, a lot of people find it hard to get life insurance, although it IS still possible (with some restrictions), and if you are a driver, it is a requirement to inform the DVLA, and you usually have to surrender your licence, and be re-issued with a (renewable) three-year one.

But offset against this, in some spheres, particularly work, a diagnosis actually confers MORE protection. So it’s by no means the case that a diagnosis is always disadvantageous, and you’d be better off not knowing.

Besides, it should be your decision, NOT your doctor’s, whether you want to find out what’s wrong.

Some people, for reasons of their own, don’t aggressively pursue a diagnosis. Looking back, I would probably count myself as one of those people. I had a sort of vague sense something was wrong, but, like you, didn’t get answers. I told myself that if it was anything serious, they would have found it, so tried to forget about it, and get on with my life. I didn’t keep going back to the doc’s, saying I still wasn’t happy. Maybe I should have, but perhaps part of me didn’t want to know?

But anyway, the point remains that it’s your decision. Your doc shouldn’t be shielding you (assuming that’s what he thinks he’s doing), if it is your wish to find out what’s wrong.

Apart from anything else, you might be missing out on relevant treatment, if you don’t find out what’s wrong.

So I think you need to press your doctor for a referral, and say you’re not happy about leaving this unexplained, even though he seems willing to treat symptoms. Why should you accept having to take drugs like gabapentin, if nobody has yet identified why you need them? I’m not saying it’s wrong for you to be prescribed them without a diagnosis. I just think it’s a little odd of your doctor to dole out things like that, but to show no curiosity about the underlying cause. I can only assume he suspects, but thinks you’d be better off not knowing.

I’m finding it hard to think of another reason.

Tina

#4

Hi R and welcome to the site

Your symptoms certainly happen in MS, but the way you describe them coming and going isn’t terribly MS-like. Could it be MS? Yes, I guess it could, but it could also be something else - one of many conditions that cause similar symptoms to MS, including things that are fixable like vitamin deficiencies (have you had a full battery of blood tests?). But the only way you are going to know for sure what is going on is to see a neuro and have it properly investigated.

I’m puzzled why your GP hasn’t referred you to a neurologist already. A patient presenting with unexplained neurological symptoms is supposed to be referred to a neurologist according to NICE; GPs are not qualified (or even allowed) to diagnose neurological conditions (or rule them out). Have you directly asked for a referral? If so, what reasons has your GP given for not referring you? Not being MS is simply not a good enough answer - MS is only one of hundreds of neurological conditions!

How do you counter your GP’s insistence that it isn’t MS? Tbh, if I were you, I wouldn’t. I would point out that there are numerous potential causes of your symptoms, but they seem to be neurological in origin and the only person properly qualified to investigate these is a neurologist, so you want to see one. I don’t know how they can refuse this in the face of your symptoms and the NICE guidelines. If they do, then it is time to get assertive (and, if necessary bring in the practice manager, ask for a second GP opinion, complain to PALS). If you don’t get anywhere then it’s probably time to get a new GP.

GPs generally know squat about neurology. Time for yours to send you to someone who does.

Karen x

#5

Thank you for your replies. My GP has the attitude that ‘sometimes we can’t always know what’s causing things so we just try to alleviate the symptoms’. I’m a scientist and like to get to the bottom of things! I do accept this can occasionally be the case, but when there have been few investigations into the cause I don’t quite feel ready to drop it and live life as if nothing’s happened!

I could see another GP at the practice, but these symptoms are quite complicated and he’s the only one I’ve discussed it with at the practice.

He actually thought he’d referred me to pain clinic in November along with another unrelated referral, managed to do the other referral but forgot the pain one!

So I’m actually hoping that the Pain Clinic might refer me to Neurology or suggest referral, I know there can be an overlap between the two.

And I am aware that lots of things can cause these symptoms, e.g. I know that an ancestor suffered pernicious anaemia so I may have something related to that, and that can cause similar symptoms I guess. I don’t think I’ve had any tests like that though.

Obviously I really hope it isn’t MS, but I get the feeling with MS that it can be best to catch it early as some of the medication can prevent flare-ups and progression, so that is why I don’t want my GP to rule it out on what seems to me like a hunch.

My GP is really nice and understanding, but he does seem to have a bit of a problem with referring me for investigations into this!!!

Fingers crossed that I get my Pain Clinic appointment through soon and a fresh perspective.

#6

My GP did refer me to a Neurologist, and I had my appointment on Saturday. The Neurologist pricked my legs with a pin, and most of my symptoms fitted in with damage to the Lateral Cutaneous Nerve, although he was a bit thrown by the symptoms in my foot, esp my big toe which have no link at all to that nerve, so to put everyone’s mind at rest I am having a Brain MRI and Nerve Conduction Tests.

Bit worried in case they do find something untoward in the brain scan, but really don’t know if they will so feeling a bit apathetic about it at the same time… not sure how I feel really. Sometimes scared, sometimes totally convinced it’ll just be a trapped nerve or something. My numbness does seem to be either settling a bit or I’m getting used to it, but the heavy feelings and twitches in my leg are getting worse, but I’m more tired the past few weeks. I never got the Gabapentin, but I guess my GP was leaving that up to the Neurologist.

Thanks to Rizzo, Anitra & Janet for your replies, it make me more determined to get my Neuro referral and it worked. x

R

#7

Really pleased you saw a neuro :slight_smile:

Hopefully you won’t have long to get some answers now!

Btw, you could always phone the neuro’s secretary and ask her/him to ask the neuro for a recommendation about meds - just tell them you’re not coping, but that your GP won’t prescribe without the neuro’s recommendation; please can they help you.

Karen x