Just saw the neurologist, disappointing consultation

New diagnosis and before diagnosis
1

Hey my names Otay I’m new, I have symptoms that seem consistent with damage to the myelin sheath, but my doctors are not taking me seriously. I’ve been questioning myself and my judgement, so I’m reaching out to this community for a sanity check.

For many years now, I’ve had:

  • Heat sensitivity, and freezing pain in hands, relieved by exercise, but worsening

  • Tingling in extremities

  • Frequent urination, periodic and worsening

  • Dizziness upon standing

  • Cognitive fog, memory problems

  • Difficulty swallowing or burping

  • Glowy vision, seeing stars in sunlight

  • Neck pain, and aches in a band shape around my back (periodic)

  • Difficulty sleeping, due to the above list

As of the last two months, after my recent “attacks” or “flare ups” or “episodes” (whatever you want to call them,) I’ve had:

  • Weakness in parts of my hands, and once in my foot (brief, sporadic)

  • Vertigo (periodic, improved after flare up ended)

  • Eye pain, in one eye (periodic, infrequent, brief)

  • Lump in throat

I’ve recently lost my job because of these symptoms, and I have always struggled to meet people’s expectations due to them.

In response to this list, my neurologist said that frequent urination is never a neurological issue, and that my issues are all caused by central sensitivity. He said that 20% - 30% of the population have the same problem, and then recommended I ask my primary care doctor for SSRIs.

I brought my mom with me, which I dont normally do on doctor visits, but the doctor made a very odd comment about her being there. He said “if your mother cut you off, your body would automatically balance itself out to survive, and all your symptoms would go away.”

I’m baffled and suspicious about this consultation, I feel as though I have done something wrong. The doctor is giving me an MRI next week, just for peace of mind. He assures me they won’t find anything. I know googling doesnt qualify me as knowledgeable, but I’ve found websites that say all of these symptoms are potentially caused by MS.

So what do you all think? Am I a crazy hypochondriac? Is there anything I should do to make sure the MRI scan checks what it needs to?

2

Hi,

the mother comment is a bit outrageous: I’m sure that all of us that are diagnosed wouldn’t just miraculously get better without family support. What a ridiculous thing to say! When I had no support Pre diagnosis I didn’t get better, I got worse and worse. Sounds like an awful consultation.

i dont think you are a hypochondriac, if you feel these things, you feel them. MS is hard to diagnose and a lot of other conditions mimic it.

The MRI should help clear this up

good luck xx

3

Hi What a ridiculous comment! Remember what ever he said an MRI shows what it shows regardless of what the neuro thinks or says so just focus on getting that out the way. I’m waiting for my MRI date to come through… The first neuro I saw said all my issues were down to anxiety but the second one I saw in the week didn’t mention anxiety and is sending me for a brain and spine MRI. See how the MRI goes and take it from there. I know how comments can make you feel as can many on here when your made to feel like your the one causing all the issues! Good luck.

4

I presume this doctor has checked for Hyperthyroidism? See https://www.nhs.uk/conditions/overactive-thyroid-hyperthyroidism/

It’s the lump in your throat that is the giveaway.

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I think I was checked for thyroid problems, but I can’t discern my results because it’s all abbreviated. I’m also trying to see an endocrinologist, is that the doctor that would do hyperthyroid?

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Thanks Flaran :]

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Thanks snapdragon :]

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Sorry to sway the topic a little but could I ask how you went about seeing a second neurologist, did you just ask or did you present with new symptoms or something else? Only asking as I have seen a neurologist and he too said it was down to anxiety which i know isn’t true, especially since a couple of my symptoms are exclusive to some type of neurological disorder and I have had anxiety for years and know how it affects me and my body, i swear they always jump to that just so they dont have to deal with you. he didn’t even do any tests except the hammer reflex one and said as that was fine it wasn’t neurological.

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Went to the emergency room when my entire body became freezing + hot, and my breathing became shallow (without anxiety.) All my tests in the ER were normal (EKG, x-rays, kidneys, etc.) My neurologist just got my low contrast MRI results which he says are normal.

Here are my symptoms, some are new and some I’ve had for years.

  • Nerve pain in extremities
  • Difficulty sleeping
  • Difficulty thinking
  • Sensitivity to heat
  • Lump in throat (persisted for a week during a flare up)
  • Difficulty breathing
  • Difficulty urinating (pressure persists afterward)
  • Dizziness
  • Vertigo
  • Neck pain
  • Muscle weakness (comes and goes pretty suddenly)
  • Eye pain (in one eye, when moved)
  • Muscle stiffness and spasms (frequent)
  • Tingling in extremities
  • Vision blurs when body is hot, especially after exercise
  • Ache wrapping around back

The nerve pain in my hands and feet is especially bad, and I’m so heat sensitive I cant sleep due to my own body heat fairly often. I have not had high contrast MRI or lumbar puncture. I don’t know if I should keep pursuing MS or not. If this is not MS, I have no idea what to do next. Please advise.

10

OK you want honesty?

There are way too many symptoms on that list. MS does not present this way.

If i was you, I would sit down quietly and think about when all this started, what were you doing? How old are you? its a puzzle a mystery which you need to try and resolve.

The key is the beginning. What happened how did these symptoms suddenly present themselves? For example did you loose someone, or a job, a relationship go bad, get a fever, have flu, anything fall off a bike.

Its amazing how sometimes the simplest answer is in the past.

Do not be obsessed with MS, you are just looking at this one thing, and it puts neurologists off. My neuro told me when i came to see me, AH a lady with a tiny list not WAR and PEACE lol. we have been together over 10 years and can be honest with each other. He said to me so many people come to see him with a ream of symptoms.

You have to kind of sort them out.

Vertigo

Neck pain

eye pain

vision issues

Dizziness

These can be connected. Do you get this when you move your head a certain way, stand up? see where i am going with this?

Circulation issues.

Tingling, nerve pain in extremities, sensitivity to temperature changes. Again you have a set of symptoms which could belong to a circulation problem.

Muscle stiffness and spasms, (define spasms?)

Muscle weakness

Ache around back (muscle weakness or spasms). See again a set of symptoms which could belong to something else.

You specifically say NERVE pain in your hands and feet, how do you know its nerve pain, it could be a circulation issue again, or a form of arthritis or RA.

I am trying to make sense of all your symptoms and you can see where the neuro is coming from.

Your symptoms could be from Lymes disease, M.E., Fibromyalgia as well. Sadly anxiety too; i.e. tingling, breathing, swallowing issues; thinking and sleeping issues.

What the neuro saw was a list full of things, and you sat there with your mother, and he immediately made the assumption you needed her to talk to him rather then she was just there to support her daughter.

I honestly think if this has been going on a bit it is not presenting as a normal MS thing, it could be viral, epstein barr, any of the weir viruses that affect us. You say CONSTRAST mri, I HAD never heard of this when i started my journey, and i can assure you right now they dont like to use constrast unless absolutely necessary as gadolinium can be dodgy on peoples kidneys.

You have had an MRI which is normal was this just brain?

I do think you have something going on, you know your own body, but you need to handle and deal with it differently. just take some time and work out when it started that is really important. I knew mine started in 2000 when i went blind on holiday, this was just a few years after I lost my wonderful dad, and between his death and 2000 i did have some really weird things going on.

so see if you can find the beginning, which should lead you to a journeys end, where you can all your main symptoms and find a cause for them which make sense.

I hope that makes sense above, and i hope it helps no googling ok. but i do think there is something going on, and it needs sorting out for me the thing that i would concentrate on is the vertigo section and dizziness, if its on standing, then that could be a good clue.

take care and be assured it can take a long time to be diagnsoed with a lot of things. My daughters friend has been ill on and off with stuff for over 10 years and finally she has been diagnosed with POTS, they were treating her for anxiety. we knew there was something else going on and the trouble is the more anxious one gets about their issues, the more anxiety shows itself and then they the doctors just see an anxious person, (casued through mystery illness). xxx

11

Hi

sorry if this reply is too late, only just saw this- to cut a long story short, the first appointment I had I paid privately (waste of money and did more harm than good), the second was with an NHS neurologist… he was brilliant and actually listened. The first looked down my referral letter, gave a patronising smile and then pretty much humoured me for 15 minutes before telling me that it’s all down to anxiety.