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Can I ask outright to see a Neurologist?

Hi

I’m new to the forum and would like to ask advise please? I’m sorry if this is all quite long winded but if finally think I’ve found a site where I feel as though I’m not cracking up! Around 6 weeks ago I woke to feeling as though I had been drip fed a bottle of vodka during my sleep. The room spinning around me like I can’t explain. Feeling extremely nauseous and extremely hot and shakey. The feeling was so intense that it took me three days to be able to get to the emergency doctors, (it was a Sunday) and I had to be driven there by my mum. The doctor checked me over quickly and said it could possibly be a virus called Labrynthitus and sent me home with some beta-histamine tablets.

The thing is I’ve had this feeling before, many times although not that bad. I’ve often described it to my husband as like I’m feeling drunk, along with an overwhelming tiredness. The only way I describe it is it’s like the kind of tiredness that you get when you’re in your early pregnancy time. When you’re that tired you could cry because you don’t know what to do with yourself.

There are so many things that I want to go to the doctors with over time but have felt like I would appear to be a hypochondriac. For years I’ve had an extremely painful left hip. I once went to hospital after a small bump in my car. It wasn’t bad enough to cause injury but I went as a precaution because the pain in my hip was really bad and my hip area felt numb, as though I had slept funny on it, it felt like putty. I can’t sleep on that side, can’t lie on it for more than 10 mins at a time before it gets too painful. A lot of things I’ve never even given much of a thought to, just thought they were things I had to put up with, things like my neck and shoulders that often go in to spasm, the pain is excruciating, again sometimes I’ve ended up in A&E the pain has been that bad. The very hot sensation that I get in my buttock area that just suddenly comes, that feels as though I’m sat on a heated seat like you get in a posh car;)…a few months back I remember sitting on the sofa watching tv and I thought I’d wet myself!! I was horrified, I had to feel to check just to be sure, the warm sensation was that ‘real’! The intense sudden sharp and very scary pains I get in my head that almost bring me to my knees, along with the migraines that I get, that are always pre-empted by a total blind spot or flashing lights etc. Then there’s the intense pains I sometimes get in my ‘nether regions’…they come from nowhere and feel like someone has shoved a red hot poker up there, they last for a minute or two and then disappear? The tinnitus I have constantly. It’s not too noticeable during the day but the second it’s quiet it’s there, a high pitched ringing noise or occasionally like a fire alarm noise…The cystitis I often get, the constant diarrhoea/constipation and IBS I suffer from…not being able to get a proper nights sleep for either waking up for a wee or my brain just going in to over drive the second my head hits the pillow, no matter how exhausted I feel…the list seems endless (now you see why I feel like a hypochondriac!!)

The past few months I’ve been worrying myself because of my poor memory. My short term memory is really concerning, I can literally forgot what I’ve gone in to a room for. I’m getting really confused about the simplest of things and a lot of the time can’t think of the words I want to say. My husband says I’m slurring my words, I don’t think I am but he gets a bit wound up and impatient with me. I feel as though I’ve aged 30 years in the last 12 months…when I go to stand up from sitting the aches and pains are awful, my legs feel weak and I feel like I’m hobbling for a few minutes until I stand up straight, to be honest it feels pathetic.

A while ago I was really worried that I may be getting shingles. Again I was feeling really tired and I had a strange feeling around my hip area, a tingling sensation not unlike pins and needles but slightly more painful.

As I speak for the past few days I’ve had a feeling in my right arm, as though I’ve got a trapped nerve. It’s a constant throbbing pain, my arms feels slightly numb and tingly and a bit cold. When I go to raise it there’s a sharp pain that makes it comes straight back down again.

Since this his last bout of ‘dizziness’ that the doctor said could be Labrynthitus I’ve never really come round fully. Some days I’m ok, I feel ok, just tired but then from nowhere the dizziness returns. Trying to do some Christmas shopping is making me so sad as it’s almost impossible. I feel as though I’m walking in slow motion, on marshmallow…my eyes feel as thought they’re taking a few seconds to focus on things as I turn my head to look around. I had the weirdest experience the other day, I thought there was an earthquake or something, I swear the floor in the shop I was in was shaking, vibrating really fast, I had to hold on to the shelf for a minute until it stopped. I fell over the other day too, the floor in front of me suddenly looked like a slide and down I went on to my knees. Anyway, I’m sorry for going on…back to my initial question, I’ve been back to the do tors last week to ask when I’m likely to feel better from this ‘Labrynthitus’ if that’s what it is…he said it could take months and told me to carry on taking the pills. I’m now not convinced it’s that at all and want o ask to see a neurologist, can I do that, just demand to see one or does that Doctor have to suggest it? Or am I simply just cracking up and need to accept it’s all part of getting old and stop moaning:)

Thanks so much for reading all of this!!!

Hi,

You can certainly ask, but not demand as of right - i.e. the doctor doesn’t have to go along with you.

A possible obstacle is that if you’ve never told the doctor all of these other concerns, they would have no reason to suspect anything other than a straightforward case of labyrinthitis, and as GPs tend to get ticked-off about referring to consultants without strong grounds, they would be a bit reluctant to do it unless there was good reason to suspect something that can’t be explained by labyrithitis. So I think probably the first step is to start being honest about the things you’ve been shutting up about for fear of being labelled a hypochondriac.

Come clean and explain that with hindsight, there are things you feel you should have mentioned, but didn’t, and see if that makes a difference to the assessment that it’s labyrinthitis. It’s very difficult for a doctor to come to a correct judgement about what the problem might be (or whether referral is needed) if they don’t have all the facts.

With hindsight, there were things I should have disclosed, but didn’t. For example, I was first investigated for a suspected slipped disc, as I had symptoms consistent something impinging on the spinal cord. What I should have mentioned, but didn’t, was that I also had very minor facial numbness. If I had mentioned that, the slipped disc theory could have been dismissed straight away, as a slipped disc only causes problems below the site of the problem, and couldn’t possibly cause facial numbness. But I wasn’t intentionally withholding anything. The facial numbness was so subtle (certainly in comparison with my feet) that I wasn’t even sure myself I hadn’t imagined it, so I didn’t want to confuse things by mentioning something I couldn’t say for sure had even happened. I’m sure if I had mentioned it, it would have been a red flag we weren’t dealing with a slipped disc, but how minor does something have to be, before you decide it’s too minor to mention, and might even have been imaginary? Knowing what I know now, I’m sure I didn’t imagine it, and it was all connected, but at the time, I wasn’t sure enough to add: “Oh, and I think my face might be bit numb as well”.

So the moral is, tell all of it - even the bits you think are irrelevant or might even have been imaginary. Let the doctor be the judge of that.

Tina

x

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Hi Tina thats very interesting about the slip disc you thought you had.

In 1980 I kept waking up with a dead arm it drove me nuts, not like when you have slept on it but really dead fingers as well and it would take ages to wake up. I eventually went to doctors and he said it was just one of those things and stp smoking lol. I smoked about 5 cigs a day, so i just dismissed it.

A few months later i woke up with what i thought was going to be a slipped disc. It was agony, radiating and numbness in my thigh. I saw the doctor and he thought it was a slipped disc, went for xrays NOTHING showed up…Anyway i had to et on with it, two children to care for and we were leaving for Kenya to live at the time. I still had this horrible ache in my hip but i am a strong women so just kept going…in Kenya the doctor there couldnt find evidence of a slipped disc. Eventually it just went.

I often wonder if that was the start of my MS. I never put the two together. You dont do you. I did have Myalgia attacks when we came back from Kenyan a few years later but overal i was ok until my next attack which started my journey in 2000 when on holiday in Brazil i went blind, anyway the rest is history.

But I agree with you sometimes things we have and we never link them together. My hip pain wason my rigt my dead arm on the left lol…

Hi Daisy welcome to the forum. May i ask you how old you are? is it relevant, well it might be lol.

OK take a deep breath…and relax.

What you now have to do, is sit down quietly and think when did it all start? It will have started at some point you will have had something happen or you would have woken up and thought wow whats that all about…like mine 1980, dead arm, pain in hip, went away…2000 went blind…then i can map several relapses…which were not considered that at the time, just problems with very bad urinary tract infections.

What you have to do is concentrate only on the main symptoms.

Vertigo - dizziness

Migraine

Nerve pain

Musculoskeletal pain

Paresthesia (sensation of tingling, tickling, pricking, or burning of a person’s skin with no apparent long-term physical effect). Can also manifest itself in feeling wet patches all sorts of weird things.

Cognitive problems (memory)

IBS

Sleeplessness

Tinnitus

Fatigue

All your symptoms are non specific, they come and go and there are no discerning patterns to them.

With MS you might start one day with a non specific problem it can go away again, then you will find that one problem will turn into a relapse and you can be down for days or even months. My first big one lasted 6 months, i recovered slowly from it and went on to work for several more years until my next one, although in between some of the problems I had in my relapse stayed with me, but were constant…they were just there if that makes sense.

What you are describing sounds similar to my daughter, who has M.E/Fibromyalgia. I am not a doctor no way, but it all sounds similar, not saying it is that but if you really sit down and write it down you might even find out when it started a trigger perhaps? My daughters was pneumonia. Really bad she had to stay with me to recover with her children, she then went on to get vertigo and it manifested itself as M.E. and then Fibromyaliga. She does see a neurologist over her M.E. It is now in remission thank god. But her symptoms were very non specific…but the fatigue was the worse.

From reading through have you had children? Did the symptoms start after the birth of a child for example?

Could your symptoms be MS well fibromyalgia and M.E. are great mimics of MS and thats why getting a diagnosis of MS can take so long for some people.

I would be more concerned about your migraine and vertigo. These two things should enable you to see a neurologist. The feeling you describe about the floor is drop attacks…its horrible and I know my daughter suffered with it. She even had an attack in the middle of the road and ended up on the floor. Scary or what and went on to be diagnosed on top of everything else with Menieres disease lol…just for good measure.

My brother recently had labyrinthitis and it started very fast made him dizzy, vertigo and he couldnt hear very well, but it recovered after a few weeks. IF you have had vertigo and dizziness before I doubt if it would be that…but then you need to see your GP again and come clean really. As Tina said without the GP knowing all these facts they only diagnose what is happening at the time.

I think your trying to be too brave with all this, and worried you might be called a hypochondriac. Your problem is by being brave you have kind of let all these important symptoms accumulate and now it all sounds bizarre in your head lol.

I would go back to the doctor and explain that you are still having the vertigo attacks, and your speech has become impaired and you are slurring your words, and you are worried because of late your memory has gotten really bad. If you husband has noticed you are slurring your words then that alone should be investigated in a young women.

So be brave go back and just say in the last week you still have the dizziness, memory problems and speech problems which is the truth, and I hope he does the right thing for you. It does sound to me as though you should see a neurologist, but all the issues for seeing one has gotten lost in all the other stuff if that makes any sense?

Try not to stress out. Migraines can cause vertigo and would you beleive it some nerve problems lol…

Anyway two things. Write down when it all started.

Go back to GP and just explain you still have vertigo, your husband is concerned and you are starting to slur your words, and your memory is not very good. I hope this leads you to some help.

What you describe could be many things but I dont think for one minute your a hypochondriac hun, just concerned. xxxx

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Thank you for your replies. Just to clarify I am 42 and have three children. Thinking back I’ve had cystitis and IBS for a long time, probably from being in my twenties, the same with migraines. As for the back problems, shoulder neck etc that was after having my first son back in 1999, I’ve always put it down to carrying a child. I had pleurisy in approx 2001/2002. I first noticed the pain in my hip when I was pregnant with my second child so just presumed it was all part and parcel of that, although the fact that he’s now 8 and it’s as bad, if not worse than it was back then I never really thought about.

I’ve woken up on a few occasions over the past 5 years or so with a horrendous pain in my chest which radiates through to my back that I have thought could possibly be pleurisy again as it was a similar type of pain, but when I’ve been to the doctors he checked my lungs and said it wasn’t pleurisy, just muscles gone in to spasm in my back, between my shoulder blades.

I honestly couldn’t say when the heat sensation in my bottom area started, probably approx 5 years or so again but it’s not something that has bothered my that much to take notice if you know what I mean, I just thought it’s an odd thing that I experience and that was that?

As for my migraines they have got worse over the last 12 months, I’ve been to the doctors because they got so bad and was told they could be cluster migraines. Because sometimes if I get a really bad migraine they make me feel sick and a bit dizzy I’ve always out these other ‘dizzy’ episodes down to having possibly had a migraine attack but without the pain if that makes sense. I mean you don’t take yourself off to the doctors every time there is something not right, well I don’t or I’d never be away lol. If I’m honest, back in January was the first time I can actually really out my finger on a really bad exhausted and dizzy attack, which I put down to the time of the month. I even went to the do tors then to see if I was possibly starting the menopause as I was starting to feel so bad. Hot sweats, exhausted, dizzy, dazed, confused, mood swings etc. He did blood tests as thought it could be thyroid problems and to rule out being peri menopausal. Negative to both and bloods were fine. Since January I have had approx 4 attacks as I call them. When I wake up feeling drunk and absolutely wiped out, but the latest was that bad that’s what made me go to the doctors finally about it. When he said it was possibly Labrynthitus I was that I’ll i didn’t think to mention I’d had it before. I was surprised as I didn’t have an ear infection at the time and hadn’t had any pain at all in my ear, didn’t need antibiotics etc. It was only when I went back to my own doctor a few days later that I mentioned I’d had this experience quite a few times before and always thought it was a migraine type of attack. I have to admit I didn’t and hadn’t mentioned the fact that I thought I was getting shingles last Christmas, the tingly itchy feeling around my waist, or the feeling that I’ve wet myself…I just never thought to?

I recall having a back X-ray once, I honestly can’t remember when but would be within the last 10 years, and I can’t remember exactly what it was for, possibly my hip problem I would imagine but nothing came from that.

im going to make an appointment to see my doctor and go through everything, thank you for your advice!

Good advice from Tina and Goldengirl.

I agree that your first step is to put the GP properly in the picture and see what that does.

Good luck.

Alison

I forgot to mention dropping things…for some reason I keep dropping things!? That’s driving me nuts too! I drop something, bend down to pick it up, feel like I have it then it drops again, four or five times I can do that!or I can be holding something and it literally just drops out of my hand, but I don’t feel as though I’ve let go, if that makes sense??

I had to go to the GP this morning as the numbness in my arm had turned into an excruciating pain that kept me awake thr while night. Im still in agony with it now but thankfully got some strong painkillers and anti-inflammatory medicication. He upside is I talked to her about everything and she said she wanted to refer me to a neurologist. Thank you for your replies…please could I ask what may be a stupid question but when you get pains in your arms, how would you describe them?

I am glad that you had a good chat with the GP.

They used to say that MS was painless. That’s rubbish, unfortunately, but I’ve been very lucky so far. The only MS pain I’ve had was a relapse years ago where, among other things, it felt like someone was jabbing me repeatedly just below the collar-bone with a screwdriver. I’ve also had patches of me go (and, in one or two cases, stay) over-sensitive, as if badly sunburned, where the lightest touch of fabric is nasty, but that’s unpleasant rather than painful. I think that both the things I have had are pretty common in MS. Oh and lots of numbness and feeling of thickening and insensitivity of the skin surface, of course, but that doesn’t usually hurt and I think pretty much everyone with MS gets that.

Sorry that you are having such a problem with pain - that sounds horrid.

Alison

Hi Daisy so glad you went to GP and spoke to her fully, now you are on the road to finding out what could be wrong.

I have had this pain in my left arm it just comes for no reason and is excruciating. It was so bad one day i went to my GP urgent appointment thinking i was having a heart attack.

It was like having the worse toothache/abcess in my arm like a massive spasm or something and it would not let go. I was kind of like coming across under my ribs too…I have very high pain threshold but this was nearly making me cry. To be honest I have had Trigiminal Neuralgia in my face and this was on a par with that.

The GP did an ECG checked my heart it was all ok. She put it down to a neuralgia/nerve pain or even from a bout of shingles i had not so long to before the attack.

I do know several friends with MS who have this pain in their arm it comes and goes and can be excruciating as well.

Whether it is directly from MS dont think any of us know, or it could be as a result of walking badly and trapping nerves in our necks…or its just part of the MS.

Thankfully i have only had 2 attacks of this pain. The other worse pain for me was in my right shin bone for 3 weeks in a relapse i thought someone had stuck a knife literally in my shin bone it was horrendous. Thank god I havent had that one again lol.

Well now you wait. The appointments usually take about a month to come through.

Enjoy your Christmas for now and try to chill a bit things are starting to look up a bit.

Sending you big hugs. I hope the pain recedes and you feel better. xx MERRY XMAS from GG63. xx