Help I'm confused

New diagnosis and before diagnosis
1

Hi

I’ve been suffering with MS symptoms for years, but ignoring them until I got electric shock pains so bad in the top of my feet that I had to be admitted to casualty. My mobility is so slow now, I’m like a little old lady but I’m only 29. I used to be a dancer and now I can hardly walk.

My GP suspected that I have MS so sent me to see a neurologist, who was actually not an MS specialist but was running a falls clinic at my local hospital - we don’t have resident neurologists you have to just see who is running a clinic that day.

Anyway, when I got there she was very busy and running late she was quite annoyed by the amount of symptoms I was telling her about, I was basically there because of mobility issue, but she started questioning me about headaches. I told her that I do have pain in my head but it’s really in the base of my head/neck and when I put my head down it hurts really bad down my spine and legs.

She then said ‘is it not more round the front’ I said no, it’s at the back of my head, but she kept pushing me so I said I had on occasion had a headache that did effect the front of my head, but this was very rare and it felt like an ordinary headache.

‘Aha I though so this migraine’ she reported. She then told me I was fatigued because I don’t sleep at night, even though I told her that I sleep for a good 7 hours and then awaken still exhausted.’

She was totally dismisive of my tremors and twitches, despite the fact that she witnessed them and agreed that I was suffering from mobility issues.

She has told me I must come off my pain killers immediately and go on migraine preventors despite me telling her I don’t have any migraine symptoms.

I told her I was worried about my mobility and she said I could see a physio.

She performed a mobility test with tasks I couldn’t do and struggled in and reflex test.

I told her myself and my GP were concerned about MS and she said no it was definitely not MS. No need for any further tests it is not MS. I’m very concerned as MS is in my family and family members have told me this is how they began with it.

So basically do you think I should ask for a second opinion or is her reflex test enough to say I definitely don’t have it and I need to look at other avenues?

Thanks x

2

Hi Kittycatcoo, welcome to the site

Yes I do think you need to see someone else. It does sound possible that you are experiencing neurological symptoms.

It’s impossible to say whether it’s MS or not as there are many conditions that have similar symptoms to MS… but I would think you need to see a neurologist who will refer you for an MRI of your brain and spine to see if anything shows up to cause the symptoms.

The sensation you are getting when you put your head down… pain in spine and legs… might be something called L’Hermitte’s Sign (google it or look on ‘symptoms’ on this site). It can be a symptom of MS and also a symptom of other conditions.

I suggest you go back to your GP and ask for another referal. Explain what happened at the clinic and how you are not satisfied. Is there another hospital that you could be refered to?

As your GP has already mentioned the possibility of MS, he/she might be willing to make another referal.

I really hope you get to see someone soon who is willing to investigate your symptoms properly!

Pat x

3

Hi Pat,

Thank you so much for replying. I’ve been feeling really depressed and disheartened since I saw the neuro as she was utterly dismissive of me. I will be making an appointment with my GP soon as the neuro will be sending a letter of her ‘findings’.

I’ll let you know how I get on and once again many thanks for answering

Sarah xx :slight_smile:

4

Hi Pat,

Thank you so much for replying. I’ve been feeling really depressed and disheartened since I saw the neuro as she was utterly dismissive of me. I will be making an appointment with my GP soon as the neuro will be sending a letter of her ‘findings’.

I’ll let you know how I get on and once again many thanks for answering

Sarah xx :slight_smile:

5

Hello, and welcome to the site

You definitely need a second opinion. Seeing whoever’s on duty in a falls clinic is absolutely not sufficient to get a proper examination or investigation. It may well be that you have migraine (it doesn’t always cause headaches, but can cause lots of neurological symptoms), but her conclusion was not supported with proper investigation and so is about as full of holes as it’s possible to get!

Have a look on the “near me” function on here (on one of the white boxes towards the top of the screen) for an MS specialist in your area and ask your GP to refer you to that person. Your family history of MS doesn’t mean that you definitely have it too, but it certainly means that it should be properly considered - by an expert.

Good luck!

Karen x

6

Thanks Karen :slight_smile: Thanks for replying :slight_smile: That was really helpful. I do think I will ask to see an MS specialist, I actually think that my GP thought she was referring me to one, but it got lost in translation. I didn’t even end up seeing the consultant who’s name was on my appointment letter.

My GP specifically requested an EEG and the neuro refused to order one, she blatantly ignored my mobility problems until I started crying and told her I can hardly leave the house and then she admitted she could see I was obviously disabled by it, but by then she wouldn’t go back on want she had diagnosed and reluctantly said she would advise physio.

Whenever I questioned what she was saying she got annoyed and then she told me ‘You defintely do not have MS, I helped out at the MS clinic and I know what people with MS look like.’

It’s made me scared to talk to the medical staff, I just felt humiliated.

But thanks for your advice and I will ask to see an MS specialist :slight_smile:

x

7

Kittycatcoo, she knows ‘what people with MS look like’??!!!

Ah yes we have super large ears and purple spotted tails… LOL…

Utter nonsense!!!

Pat x

8

Like Pat, I am gobsmacked at that line! A lot of people with MS look completely normal!!!

That line alone should be enough to justify a proper consultation with an MS specialist.

Jeez!

Kx (I dye my purple spotted tail pink as a diguise :-))

9

Hey Kittykat…slightly stunned at your neurologists lack of bedside manner and knowledge lol…helping out in th MS clinic may have brought her into contact with people who need to visit the clinic and may be visibly showing symptoms, i know myself when i have visited there i’ve felt out of place as my MS could be classed as invisible…it doesnt make the symptoms that i feel any less but means that people who dont know me are none the wiser. Tell your GP quite blatantly the way you’ve been treated…im quite sure that your GP would also feel undermined by his requests for testing being ignored!

Good luck x

10

Lol exactly I could have had my purple spotted tail tucked into my coat for all she knew :wink:

But seriously I know that you can’t tell people have MS from looking at them, my mum has it and she looks normal, well kind of ;), lol only joking!

But I will tell my GP that she told me that as well, I wish I’d recorded her consultation now as it seems I wasn’t wrong to be upset and confused by it!

Sarah xx

11

Hi catcatcatcat,

Thanks for your reply :slight_smile: I will defintely make sure I tell my GP exactly what was said and I’ll let you all know how I get on.

Thanks to you all for being so kind and helpful, it’s really made me feel lots better

xxx

12

Hi I have just been to see a neuro, and she checked me over my reflexes and checked my eyes.She has not seen my MRI scan so cant really say what is wrong with me, she thinks its not MS so what can it be…They just dont seam to understand what we are going through!!!

Jan

13

Hi Jan

They really don’t seem to have any idea of how scary it is do they? They’re so dismissive and there’s no support offered.

Where abouts did they scan during the MRI?

I was supposedly getting an MRI of upper spine and brain and an EEG but since the reflex test was apparently ok they’ve decided there’s no point.

x

14

Hi, My brain was scaned and it showed demyelation of the white matter…GP said it maybe MS, but the neuro said my reflexes were fine, she said I seam to be aware of how I move my head etc…She mentioned inner ear probs because of balance, but I have very painful legs and arms and the spasms are awful.

Just in limboland and have to wait!!!

Jan

15

That’s what I’m like. I can’t walk properly at all any more. I can’t even get up the stairs and have had to move back home with my parents as I can’t cope alone now.

Did your GP order the brain MRI was it the neuro?

x

16

Sorry I meant to say was it the GP who ordered the brain MRI OR the neuro? :slight_smile:

17

Hi It was my GP who ordered the MRI had that in August, 5th Sept results saying Demyelation which can be MS. Today though I have felt so let down, how can they make an appointment, but not have the results at hand?

Jan

18

Hi It was my GP who ordered the MRI had that in August, 5th Sept results saying Demyelation which can be MS. Today though I have felt so let down, how can they make an appointment, but not have the results at hand?

Jan

19

Hi It was my GP who ordered the MRI had that in August, 5th Sept results saying Demyelation which can be MS. Today though I have felt so let down, how can they make an appointment, but not have the results at hand?

Jan

20

That’s terrible, they should have definitely had the results with them :frowning: I know how you feel, you build yourself up to thinking you’re going to get some answers, but unfortunately it seems that most people here have had a really long and hard journey towards a diagnosis.

I’m also not understanding how they’re so certain from a reflex test that it’s not MS. My GP tested my reflexes and was concerned she also tested my strength and said I was weak on the left hand side.

Do you think I should ask my GP for a brain MRI before I see another neuro?

My GP thought the neuro would order one and an EEG.