First neuro appointment, worried scared

New diagnosis and before diagnosis
1

How do I prepare for my first neuro appointment which I think is next week, how do I prepare for it. What are neuro appointments like…

I’ve been so fatigued, I haven’t been able to function properly. No matter how much I sleep I just feel fatigued and slowed down.

I feel like my symptoms resemble those of MS, but I don’t know if it is.

Other symptoms have been;

  • Knee collapsing, foot dropping
  • Spasms in arms and legs
  • Numbness and burning, and random sharp pains
  • dizziness
  • chest pain, tightness around my back and ribs (doesn’t feel the same as asthma does)
  • memory problems
  • Nausea
  • Balance problems (I still fall over even when I’m using crutches)
  • Bladder problems (sorry tmi)

Does my symptoms sound like it could be MS, I know no one can say for sure. I’m just worried, all the tests I’ve had so far are always normal. I’ve had my heart checked and an MRI because they thought I might of had a stroke, cardiology department didn’t see anything in the mri of my brain or anything wrong my heart. I was supposed to have a tilt test a few weeks ago but now its next month.

Sorry for the really long post

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Hello Shelley

You are right, no one on this forum can tell you whether it is, or even looks like it might be MS.

All you can do in preparation for your neuro appointment is to write a basic time line, write notes on what has happened to you and when. Note how long symptoms have lasted and whether they have completely resolved or are still with you.

If possible, take someone with you to the appointment. They might remind you of things you’ve forgotten, and also, remember what is said during the appointment. It’s very common to leave a neurology appointment and have forgotten everything that was said and not know what happens next. This is in spite of the fact that during the appointment you thought you understood everything that was said. I call it neurologistitis.

Sue

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I was kinda hoping someone might relate to the symptoms, because I know they can’t give a definite answer.

I’ll start making some notes, I usually go blank in my appointments and forget to say something.

I don’t have anyone who can go with me so I’ll just record the conversation on my phone. I just have to remember to do that before i go in haha

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MS Trust info is helpful.

And the NHS uses NICE

Multiple sclerosis in adults: management

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Thank you

1 Like
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Hi Shelly

I was diagnosed two days ago with MS after an MRI scan of my brain and cervical spine. I await a lumber puncture to basically add a second confirmation to what I was told.

I am still quite raw about the whole thing but when I read your post I understand (as I’m sure every one on this forum does) your fears .

I had some of the symptoms you described for many weeks and I thought I was going mad. My GP was lovely but after a long wait (maybe it wasn’t long but to me it felt an age) to see a consultant I decided to go private (I’m not rich but I needed answers so dipped into my savings).

The 1st appointment was just telling him of my symptoms and rough timelines and my worst fears.

The 2nd appointment was 2wks later for MRI of brain and upper neck.

The 3rd appointment was 2wks after that where I was given the bad news… each appointment I took someone with me and I’m glad I did as each time I struggled to take in what was being asked.

I wish you all the best Shelley… I really do ! Don’t be afraid there are so many of us in the same situation.

Gee

1 Like
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Welcome Gee.

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Thanks for the welcome PJDay.

Like most people I’m still a bit in limbo land with this diagnosis… especially when folk have been saying how well I look recently. Eh? If only they knew how I felt !

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Yes, welcome Gee. It’s a club none of us would choose to join, but I’m glad it’s here.

People do have a tendency to say ‘you’re looking well’, just at the point when you feel like cr@p. It’s a not very welcome part of having MS.

We (ie, those of us with more experience) try to help out with the questions and worries people newly diagnosed, or half diagnosed, or just waiting for appointments. So if you have concerns, feel free to air them on here. There will either be others in the same boat, or people who understand and might have answers for you.

Sue

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Thanks Sue

I think I had myself diagnosed weeks before the hospital did. When everything else is ruled out then it doesn’t leave much else but it is still a shock to actually hear the words.

I’m trying to look positively at things but it’s hard

Gee

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Hi Shelley, My first neuro appointment was last weekend (due to symptoms very much like yours) so it’s still fairly fresh in my mind. I wrote a list of my symptoms , when they appeared, how long they lasted and covered everything that I could remember going back quite some years. It made things easier at the start of the appointment as I gave the neurologist something orderly to read rather than trying to blurt everything out and leaving realising I’d missed things (my short term memory is erratic some days) After that I had a short examination in the form of reflex tests , follow the pen with your eyes, hold your arms like this type things and that was it. I was worried before going in and given the circumstances it was an ok experience! I’ve now been referred for an MRI “to try and rule out MS” so I’m currently waiting for a date for that. Best of luck! Steve

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Don’t be too hard on yourself Gee, there’s no harm in a bit of shouting, ‘why me’, ‘it’s not f’ing fair’, and just generally feeling aggrieved at your diagnosis. It’s not exactly a positive thing - like no one grows up thinking ‘I’d really like to get an autoimmune disease, something like MS would do’ - so allow yourself a bit of negativity and some gentle self pity. I would never tell anyone to look on the positive side. Eventually the diagnosis just becomes a part of you, not negative, not positive, just life!

Sue

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Hi Steve

That sounds like a textbook way to approach a first neurology appointment. I’m sure you get the best out of an appointment by preparing for it. Giving the neurologist the facts of what has happened and when, allows him/her to make a more informed judgement on what ‘might’ be wrong.

I hope the MRI happens soon, and results quickly thereafter. And also of course, that it’s not MS.

Whatever happens, welcome to the forum we’d all rather not have to join. If you have questions / worries / thoughts, this is a good place to air them. There is bound to be either someone in the same position as you or someone already diagnosed who can help.

Sue

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Hi Steve and Hi Sue

Steve, that sounds exactly like the examination I received too. The MRI scan isn’t scary just a wee bit daunting . You can request an eye mask and to listen to music… I found the eye mask helped me to relax and the music cut out the sound of the scanner working. The scanner is a bit clunky and the music wasn’t very uplifting although I now know a lot more about claiming PPI. You will also have a buzzer to press if you need any assistance and the people working the scanner can speak to you and you them. My best wishes are with you and I hope you get good news when you receive your results . Just Remember you are not alone and you can get really good help and support here on the forum.

Sue, thank you for your reply. Yes It is still quite raw and I am still at the ‘grieving’ and ‘angry’ stage. Trying to take each day as it comes and trying to make sure I am eating as i’ve Not felt like eating much these last few days.

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I wish I could afford to go private but without a job I’m kind of stuck for money. I’m in limbo, because the neuro decided it might be seizures or peripheral neuropathy but I don’t really have as many of the symptoms. It’s so frustrating, private seems the only way to get a quicker diagnosis of something. I’ve got to wait 3 months for my next appointment

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My neuro hasn’t tried to rule out MS, which is really frustrating. She didn’t even consider it even though I have a lot of the symptoms. I’m getting tested for seizures even though she doesn’t think that’s what I’m having.

But glad you are closer to finding out whether you have ms or not

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So, your MRI did not show any sign of demyelinating disease ie.,. multiple sclerosis.

When I had my first MRI it showed up straight away. Perhaps it is something else.

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Hi Shelley

I’ve just picked out the bits and pieces you’ve posted in between other posts.

On your initial post, you were still waiting for the first neurology appointment. I presume you’ve now had that and the neurologist has discounted MS, and is looking at seizures or peripheral neuropathy?

I assume the neurologist did go through your history with you, and (hopefully) did a physical examination? And his/her views were based on the tests you’ve had, including the clear MRI and your physical exam? If so, you need to consider the idea that the neurologist might be right.

There are some tests that are clear indicators for MS, these include some of the reflex tests. When these signs are absent, certain things are excluded from the neurologists differential diagnosis.

If you add this to the clear MRI, and possibly some of the symptoms you’ve experienced, the neurologist could be doing exactly the right thing in arranging to see you in a few months rather than make a diagnostic decision now.

One of the things you could think about is that lots of the symptoms which appear with MS also occur in other diagnoses.

I suggest that you start keeping a diary of what happens to you and when. If you think back as far as you can to when your first symptoms began, consider what happened, whether the symptom improved, stayed the same or got worse. Write notes how long each symptom lasted. And from now on, keep notes of how you feel each day.

When I first started keeping a diary, everyday I’d try to keep notes on each part of me that was affected. That way I could go back and consider what changed, got better or worse. Initially I started just using a notebook, but then got an app for my iPad which I still keep 7 years later (just as well really, I could write then, my hands won’t let me anymore!).

It will help when you go back to see the neurologist. In the meantime, it seems that you are stuck in Limbo, with no diagnosis. Keep coming on here, don’t worry that the neurologist at this point has discounted MS, plenty of people have similar experiences and eventually they are diagnosed with something (maybe even MS!) or the symptoms improve.

Best of luck

Sue

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So I seem to be having all my appoints back to front - I have my neurologist appoint on Tuesday but have had the fully body Mri. A month ago and a lumber puncture today . It’s all looking one way with my own putting two and two together - constant pins and needles and numbness in left side - forget what I’m doing when I’m doing it - burning stomach muscles which I thought was my foray into fitness but stopped - I had galandular Fever as a teen and constant low vitamin D even tho I take supplements and constantly tired -

my cousin is coming with me Tuesday morning and then we’re having a nice lunch after lets do this

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Hi, I have been having neurological symptoms for the last 3 years which have come and gone regularly but now seem to be pretty constant. Stiffness, muscle spasms, sudden sharp pains, dizziness, unsteadiness, feeling like my right leg won’t support me, abysmal memory, unable to concentrate and easily distracted, excessive fatigue, numbness in hands (poured boiling water over one by accident and didn’t notice),uneven gait and unable to walk fast, drooling and difficulty chewing food, almost no sense of taste etc I’ve been back and forth to my GP who has now referred me to a neurologist but it’s been about 6 months now with still no appointment even though I’ve asked the GP during several visits if they could try to hurry things along as now my symptoms are affecting my ability to do my job.Until now I had been reluctant to tell my employer or to self refer to Occ Health as I was still hoping it wasn’t anything that couldn’t be fixed with medication etc, as I have had recent issues with being bullied by one of my managers ‘favourites’, which though outwardly dealt with appropriately, has left a lasting feeling of being an outcast and less than competent. I’m a nurse, and as winter is our busiest time I’m finding everything overwhelming and have made two mistakes recently which could’ve had serious consequences ,thankfully they did not, or I would never have forgiven myself. This has made it impossible for me not to tell my employer about my symptoms , GP visits and referral. What began as a bollocking for the mistakes ended in them being outwardly supportive, but they seem to be asking specific questions which appear to have the long term aim of getting rid of me (which would be great if it was a move to a less intensive area where immediate and accurate action wasn’t requires to keep patients safe. I have been removed from clinical duties temporarily until my occ health assessment next month, but can they dismiss me if I’m no longer able to practice as a nurse in an acute area ? I don’t know what my rights are and I don’t even have a diagnosis, so how long can this continue ? Any help appreciated.