Neurologist Diagnosis - disatisfied and angry

New diagnosis and before diagnosis
1

Good Afternoon All,

I will try and keep this short and sweet, however that’s harder said than done when you’re so fed up of getting nowhere and still suffering 14 months later.

I have been on and off here over the past 14 months with neurological issues that started back in May last year. (numbness in left knee, lasted two weeks)

Due to covid i was put on a waiting list to then go on the waiting list to see neurologist, so I took it upon myself to go private (What a waste of time that was)

From the symptoms I described he has diagnosed me with (L ulnar neuritia with hypervigilance symptoms)

I basically paid him £200 for him to tell me i have nerve damage in my left arm, and that i have hypervigilance, which is basically a state of heightened alertness.

December 2019 - Nerve conduction test said i had nerve damage in left arm slightly and MRI of head and spine clear.

However if you read my symptoms below, There is something more to it? Do i push on and ask to see another opinion.

May 2019

Odd sensations in vagina – felt different when wiping, feeling of going numb.

Left knee went numb for two weeks.

September 1st 2019

Feeling of Flu like symptoms – lasted several weeks. Doctors put down to Viral infection, along with sharp ear pains that had started a few weeks before. (Referred to ENT for pains in Ears 05.12.19)

September 11th – Bloods – Came back negative

September 13th – Symptoms had got worse, inside vagina started to burn, back to the doctors, told me to ride it out.

Beginning of October – Tingling sensation on nose – lasted 2 weeks / 1 week of frequent urge to urinate but little coming out, Numb sensation on forehead. 3 days later on left knee.

20th October – sleep disturbances, unable to get back to sleep – lasted 4 / 5 weeks.

27th October – A & E – Felt unwell again.

28th October – Back to Doctors for some Anxiety tablets to try and help worrying because of symptoms.

November 3rd – Pins and needles in left arm, (2 weeks), on and off. Left little finger feeling of numbness.

November 8th – Back to Doctors, explain numb sensations on forehead and knee, advised for Vitamin D deficiency blood test. all bloods came back clear

January 23rd – Tingling of lip (During having cold) lasted ½ day. Intermittent

June 03rd – Burning in arms and feet

June 10th – Tingling in left little finger

July 2nd – Tingling in arms when bent – still on going

July 27th - fatigued – 2 days i literally couldnt function i had to lay down at work in the toilets, then got better over coming days

I am unsure what i should do next?

I am worried, i know my body and i know something isnt right, my current symptoms are

Current Symptoms

Burning and tingling in arms (mainly tingling when bent)

Tingling in legs when bent, mainly when asleep, knees are numb.

Eyes go out of focus sometimes. Mainly at work when I’m starring at something.

Legs and arms feel weak, shaky if walking down stairs or picking up objects feel like they are shaking.

Spasms daily, mainly when im resting

Burning inside vagina.

Burning of feet

Any advise would be so appreciated. I am so fed up. Its been over a year now since all this started and i dont know where else to turn

Thank you for reading (if you got this far) haha.

Stace

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Perhaps see your GP, for referral to see another neurologist, explaining your ongoing symptoms? I’d certainly push for a second opinion though.

Good luck!

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Sounds like you’re having an awful time. Am I correct in thinking that you’ve seen two neurologists? Has FND ever been suggested or mentioned to you? I’ve added a link about FND just for info really. I would probably head back to the GP just in case it’s not a neurological thing!

Hope you get answers

https://rarediseases.org/rare-diseases/fnd/

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4

I don’t know your age, but vaginal burning is strongly associated with perimenopause and menopause. Often when women’s hormones go out of balance other things do too, such as zinc and magnesium levels dropping sharply, and the whole lot can cause a load of very strange sensations, including a lot of neurological type sensations - shakiness, muscle twinges and spasms, electric type shocks, tingling, crawling under the skin etc some very like you have described here. Anxiety can rocket too. GPs are still very unaware of the extent of symptoms of perimenopause, thinking that it is limited to hot flushes and dry vagina. Many are quite unaware of perimenopause, thinking that problems only start after menopause has started proper. Just a thought.

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Morning greengiant.

i have bitten the bullet and asked for a phone call from my doctors to ask for another neurologist referral for a second opinion.

thank you for taking the time to respond.

appreciated

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I have only seen one that I paid for myself.

when I went to the doctors with my symptoms the doctor said sounds like MS let’s book you in for a head and spine MRI.

that came back negative in December.

FND has not been mentioned not. I have bitten the bullet and asked for a call back from my doctor to discuss for a second opinion.

if my MRI is negative does that definitely mean I don’t have MS? I have read so many threads about clear MRIS and then later down the line they showed something.

i think I just want another opinion and possibly lumbar puncture.

thank you for taking the time to respond, I appreciate it

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Hi Ziola,

I am 32? I also got all my bloods taken and they were all fine.
but something to consider.

thank you for taking the time to respond.

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Good luck with the GP appointment.

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Hi, have you been checked a UTI (bladder infection)?

32 is a very young age for the menopause or peri…but you never know.

It is possible to have an MRI on the brain and spine when looking for MS and not find anything,

It took 5 MRIs and a 22 year period to find mine! I was diagnosed with a rare form of MS ie Spinal MS ie no lesions on brain, just on spine.

Let us know how the doctor`s appointment go.

Boudsx

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Hello Stacey

If you’ve had brain and spine MRIs and both are clear, at that point you didn’t have MS and probably don’t now. Added to the neurologists appointment where I assume s/he took a history and did an examination, plus the nerve conduction study showing slight nerve damage, it sounds like you don’t have MS.

But, you clearly have something wrong and the starting point for that is your GP. If you were to begin again with your GP, go through your history (try to keep it brief as your time with the GP will be limited), ask for a referral to an NHS neurologist so you can be re-examined.

Think about the fact that you’ve had MS definitively ruled out. The neurologist wouldn’t specifically be looking for MS, they’d be starting from ground zero, looking at you as an individual and trying to identify 1) is there a neurological problem causing your symptoms, and if so, 2) what your symptoms and examination might signify, ie what could be wrong with you. Subsequently, 3) what tests might be useful to enable them to diagnose you. These could be further MRI(s), further nerve conduction tests, lumbar puncture, evoked potentials and other tests (of which we as people with MS might be unaware).

The suggestion of Not quite super mum (good user name!) about FND is quite a good one. You could also see https://fndhope.org/fnd-guide/

Meanwhile, try not to focus on MS, your doctor(s) won’t be looking at you with a view to ruling MS in or out, they’ll be looking at your symptoms and physical condition to see what could be wrong.

Best of luck.

Sue

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Hi Bouds,

yes I have been tested for UTI. I do think it’s all connected with all my other symptoms, burning in other parts of my body, but inside is more consistent than the other parts but neurologist seems to think that’s a seperate issue.

I shall keep you updated when I speak to the doctor today. Hoping for a second opinion through the NHS because I’m not happy with the one I paid for private.
thank you for replying

stacey

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Hi Sue,

thank you so much for taking the time to reply, it’s a very stressful time being in limbo and not knowing what’s happening with your body. It feels like every part of my body has had some sort of issue in the past 14 months.

I shall take your advice and speak to the doctor today about asking for a second opinion.

hope you are well

Stacey

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When a person is banging her head against a brick wall, it is often a good plan to stop doing that. And arguing with a negative MRI scan is always going to be a struggle. In your shoes, I would be inclined to step back and just wait to see what happens. If you do have MS, you won’t have heard the last of it, and whatever it does to you next might start a much more straightforward path to dx.

Alison

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Hi again, I know my case is one of the rarer ones, but it just shows how wrong neuros can be. MS was ruled out for me and I forgot about it. But it has finally been proven that I have it 22 years on.

I dont want to scare or alarm anyone but feel it must be said.

Boudsx

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I don’t want to dismiss his diagnosis, because I do have nerve damage in my left arm that was confirmed from the nerve conduction test, but I just feel like I would like a second opinion.

no scaring at all, don’t worry about that. I’ve processed every possible outcome of what it could be, and what will be will be.

spoke to the doctor, she is referring me for a second opinion, but waiting list could be Upto a year, a long year it will be, but will carry on living my life.

hope you are well Bouds, fellow Yorkshire gal.

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Hi Allison, thank you for your reply.

i have spoke to the doctor, and she is referring me for a second opinion, could be Upto a year waiting list, during the waiting game I will carry on living my life with these issues the best I can and by then there might be some changes.

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My first mri was ‘clear’ it took a second and even that they were on the fence about. Only then did they look back at the first one and say actually there were two tiny dots there but they were only the smallest of little specks and no one in their right mind would think anything of them.
So maybe ask for your images on disc. That’s what I ended up doing and it was only by a second person taking a look (along with other tests results that confirmed things) that I got diagnosed. My ‘normal’ MRIs are still an issue now with treatment options but I am proof that MRIs are not everything.
Also don’t mean to scare you but just wanted to share in case it helps you with your next steps. Good luck with everything xxx

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Morning Charl.

I have received the images on disc, and the neurologist that I paid to see private said they were absolutely clear, perfect he said.
But I am aware that a clear mri doesn’t indicate that I’m in the clear, that’s why I’ve asked to see another Neurologist, only downfall is the waiting list is Upto a year considering everything.

what other tests did you have done? What’s your story if you don’t mind me asking?

no don’t be silly you aren’t scaring me, I’ve kind of gone through all that process last year, I’m just annoyed now because I want answers of what’s going on.

thank you for your reply, I appreciate it.

Stacey xx

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Hi - don’t mind you asking at all, what we’re all here for. If you want more details happy to pm you. But a very long story summed up briefly is that I had a wide range of symptoms, tingling and eye pain being the most prominent. But so many others too. The fact I had so many made them doubt ms from the beginning. First neuro was convinced it was anxiety. Ordered brain and c-spine mri which came back clear, although I didn’t believe it! Got a second opinion privately and had VEP done and another mri including spine as well. The mri showed 2 brain hyper intensities but he said they were so innocent looking they could be down to anything, people get them for reasons other than ms and he considered the mri normal overall. But the VEP showed damage so the two together were enough to warrant a LP and that showed the ms antibodies. So LP, VEP and what they called a borderline mri was enough to diagnose. Plus a shed load of blood tests to rule out anything else.

When he looked back at the first mri the hyperintensities were there but so tiny he said no one would ever have reported them. Does make you wonder how many people get told their MRIs are clear when actually they’re not, it’s just someone’s opinion that whatever’s on them isn’t relevant.

As I said, happy to message you in more detail if you want. That’s a very brief summary and there were other issues with the first mri that made me doubt it’s reliability! Xx

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The other thing to consider is that some hospitals have ‘general’ consultants, who are used for people with symptoms that don’t point neatly to just one discipline. Specialists are often so focussed on their own discipline, and have forgotten a lot of their earlier, wider medical training that they miss obvious signs of other things. A general consultant will keep a much more open mind, and see you much more as a whole person rather than as a pile of nerves, or bones, or sinuses etc!

15 years ago I was referred to one by my GP. The general consultant spotted my cervical dystonia straightaway, and referred me on to the neurology department for treatment. Unfortunately the neurology department was headed by a neurologist with a mission to prove that nearly all neurological symptoms in people were FND, so he first injected the wrong muscles, with bad effect, then tried to fit an FND label on me. His neuro-pyschologist quickly overturned that FND diagnosis in no-uncertain terms, and I then was referred to an expert dystonia clinic at another hospital where I have been treated until just recently.

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