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Help please with crucial consultation

Hi, I’m looking for help in how to put my self across to my neurologist when I meet her. I’ve been suffering from many symptoms for 22 months which include

tingling tongue, pins and needles in fingers, and legs, bad fatigue, pain behind my eyes, drinks seeming boiling hot when they are not , loud Tinnitus, earache, painful lymph glands, costacondritis , painful and aching feet and hands, stumbling , dizziness, inability to absorb what’s being said to me or the written word when fatigued. A tight band around my chest and throat. My blood tests always come back normal

I have been to see all kinds of doctors who feel it’s central sensitisation and anxiety but I feel strongly they are wrong as I’m never anxious and I meditate and practice mindfulness and have done for years. The only thing I’m offered is to learn mindfulness and antidepressants, which I have refused.

Im really worried that now I’ve finally got to see a neurologist, she will also put all my symptoms down to being all in my mind and also give me no help. I have asked nine times, various doctors for an MRI

Does anyone have any ideas how I can put my self across in a way I will be heard and believed. ?

I would be so grateful for any help and guidance.

You don’t really to put yourself across in any particular way. Just be honest. The hard part is done now that you actually have managed to get the neurological referral.

You will get called in, they will shake your hand and then you will sit down and the process starts. What has brought you here today? Tell me about your symptoms? How long has each lasted? Have you had any previous episodes? Any history of family neurological illness? What do you do do a living? Any stress in your life? How do your symptoms impact you daily?

Then the neurological examination would usually happen. They may ask you to lay on th bed and they will test your strength in the limbs. They may move your limbs to check for spasticity, they may scrape the bottom of your feet to observe what your toes do in response. They may ask you to walk a short distance to check your gait and they may ask you to stand with eyes shut and your arms out in front to check for drift. They may also look in your eyes with a light and ask you to move your eyeballs left and right etc. Once all that is done you will sit back down and they will tell you what going to happen next.

I should add that very neurologist is different. Some are elusive and play their cards close to their chests, others are more open and honest. They may say they are going to request an MRI of brain and/or spine. It all depends on the symptoms you’ve described and the results of the neurological examination. If they suspect MS they may also request a lumbar puncture and VEP test. As I said before every neurologist is different. Some will prefer to order all 3 of the major tests in one hit, others prefer to just do mri to begin with. However,they may suggest other tests such as nerve conduction or electromyography if they think that your symptoms are caused by the peripheral nervous system, for example, instead of the central nervous system. Or maybe they will think there is an entirely different cause. They may also ask you what YOU think is wrong and in my experience I would have no qualms in telling them the truth. In theory they may be able to say (perhaps not with complete certainty but definitely with an educated and professional inkling) that you don’t have MS and it’s incredible what hearing those words can do for your emotional health. They may also say that your examination showed no abnormalities and they would prefer to perhaps review you in 6 months and leave any testing on the back burner for now.

So go in , be brave and confident and honest and let them do the rest!! Good luck!!!

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hi nikki

it may help to take someone with you who has seen your symptoms first hand.

this person can prompt you if you dry up (which is highly likely) and help you to remember what the neuro said.

times of high stress make me lose the power of speech and memory.

as cherry tree said, tell the neuro honestly what has been going on.

good luck

carole x

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That is probably the best explanation of what happens during a new neurology appointment that I’ve seen.

Well done.

Cant think of anything to add to that.

Just be honest and the doctor will do the rest. Obviously some doctors are better at communicating their thoughts than others (as you said already), so not all neurologists appointments happen exactly like this. But a good one will.

Sue

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And that is the other important thing - take someone with you to act as a spare Brain for you. It’s typical that we have neurologistitis in a new appointment. We forget what we meant to say, burble instead of talking sensibly, and then leave the room having forgotten everything that was said. ‘What happened?’ ‘What next?’ ‘What did s/he say about X?’

Sue

Thank you to all of you for your support, it’s much appreciated. It’s funny, but I’m more bothered about being believed than about the diagnosis! I’ve found that there is something fundamentally disturbing and upsetting about not being heard, it can make you doubt your own evidence.

I have thirty two symptoms so I’m going to draw a big cartoon woman and put labels and arrows to what and where. My Rheumatologist really appreciated this. It’s the only way I can think of to remember it all as my brain fog can be acute.

Could you advise me if it’s worth talking about inexplicable bouts of chronic pain that can be so off the scale that Morphine would not help much? They only last an hour and can be weeks apart but hurt as much as child birth. But they seem to make no sense and have no logical reason. They have been in the teeth and jaw (trigeminal neuralgia ) but recently are in the lower bowel. It happened last night and was pretty dreadful. Interestingly my body went so weak that I could barely move and it was literally impossible to get out of bed. But it probably won’t happen again for ages.

You see I don’t know where to draw the line between daily problems and incidental ones like this. My confidence in communicating is that I’m very scared that I will yet again be told it’s all in my mind. The only acknowledgment I’ve had so far is doctors have sometimes said that they can tell something is going on, but it’s not there area of expertise. I’m then put on the waiting list for another ology .

Thanks for explaining the process of what to expect, it’s helpful

nikki

tell the neuro everything.

it’s all worth telling.

i describe ms to people who don’t have a clue as being like a dodgy chip in your hardrive.

functions most of the time but then has dramatic malfunctions!

i would say there are loads more symptoms but won’t be going into them unless you want me to.

my neuro wanted to find answers more than i did,

he told me off for saying that i wasnt planning on telling him all my symptoms.

he said that it would be helpful to him.

good luck

Hello Nikki I’m new to this too. Finding it difficult to put my symptoms into sufficient words for Drs to take seriously. My GP has recently also suggested almost subtly that it’s in my mind and I’m afraid I have been here before but many years ago, when several GPs at my practice didn’t believe me and I was later found to have ALL. So, I think we have to ‘stick to our guns’ as they say, and be strong even though it’s another drain on our energy levels in order to get an answer as to what is actually happening with our bodies and health. I’m interested in your foot pain as I have it too and didn’t think it could be related to ms. Also, I do get pins and needles yet I would describe my fingertips sensation as though they were recovering from chilblains. Best of luck to you. Keep believing in yourself, from Posey

Hello

Write it down. For the GP and neurologist, write some bullet points, that will remind you what you wanted to say.

For your own benefit, start writing a diary. There are lots of online apps (if you use such technology) which you can use to record what’s going on daily. If you’re old school, then buy a diary, or use a notebook. You don’t have to write something everyday, just what’s important.

Sue

Hi there…any help would be appreciated as im going crazy at the minute…1st thing i had symptons a few years ago…tingling,eye sight etc…but MRI showed some consistentcies with MS but not enough for a diagnoises…fast forward 8 years and i started getting shooting pains in my scrotum area…they come and go but when they come they come with a vengance…iv had MRI and awaiting results…but iv been to a&e a few times and recently been put on PREDNISOLONE…ACICLOVIR…DULOXETINE…im not sleeping with the paon…again…please…any advice i would be so greatful for Thanks Ryan

Ryan

Sorry, I’ve just seen that you’d posted before and weren’t answered. It often helps to start a new thread (hit the button marked New Thread, give it a title, then include whatever information you want help with / want to say), you may get more replies that way.

It sounds like when you had symptoms and some abnormalities on your MRI years ago, that might now be called a ‘Clinically Isolated Syndrome’ or CIS. When people are given that diagnosis, you are told that it’s possible MS might be lurking in their future, but maybe not. They might just recover and never have any further MS type symptoms again.

The drugs you’ve been given have a variety of purposes and of course, they come with side effects. Prednisolone is a steroid, I assume you’ve been given a short course of high dose steroids. Their point is to reduce inflammation. If what’s causing your pain is an MSy thing, then the steroids ‘might’ help you to recover. Their effect isn’t 100% reliable, but often they can work miracles. Aciclovir is an antiviral drug. So if there’s a virus in your system causing the effects, then they should help. Duloxetine is a neuropathic pain drug. Depending on what kind of pain you are experiencing, they might help. If they don’t, ask your GP for another neuropathic painkiller.

One problem is that high dose steroids cause sleeplessness. So you could be suffering that and your pain will probably be driving you batty at night because you’re not sleeping.

When you next see the neurologist (which should be to get the results of the new MRI), talk about the cocktail of drugs you’ve been given. And explain that they don’t work on the pain. S/he will be able at that point hopefully be give you more answers to what is wrong with you, and a different prescription.

I hope you find some relief from the pain. And that you don’t have too long to wait for results.

Sue