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So upset and don't know what to do

Well been to see the neuro and it was a total waste of time. He was running 40 minutes late so he rushed me through everything. I took a list of my symptoms which he did look at. He said he had never heard of anyone having a numb tongue with any condition. He checked me reflexes then announced it was probably all down to my age and I was hormonal! He also said it might be migraine. I asked him if it was normal to have migraine for 8 weeks and he just shrugged. He told me to ring if it doesn’t get any better and he will prescribe migraine tablets. So that’s it I am dumped and still have no answers. Have been sat here crying for the last half hour. Looks like I don’t belong here after all :frowning: Xx

Oh my goodness I am so sorry it went so badly! loving cuddles
He actually sounds very unprofessional and I would absolutely try to find a new one, but please try not to let it get you down: - it seems you were better off without his awful “expertise” anyway!

I hope you don’t need to suffer like this for a long time my dear. Hang on in there!! And let us know about anything at all.

Much, much love to you. x

I’m so sorry, though I don’t know how he has never heard of the tongue ting as that is how I started, could only drink from a straw and lived off of soft food. Could you ask for a second opinion? Chis x

Thanks. I thought about going private but I just can’t afford it. They have 3 neuros here and I have seen 2 of them!!! One is my eppy neuro though. The one today was a movement disorder specialist and the other is the ms guy. I just don’t feel like I have the energy to carry on with it he made me feel like I was making it all up. I pleased others have the numb tongue (well not pleased but you know what I mean!) he looked at me like I was a lunatic when I said it. Xx

Nope I get a numb tongue and teeth that throb…they might be specialists but they dont have it and it appears they often discount things they shouldnt.

Im so sorry today didnt work out well for you,and it reinforces why so many of us dread going to see neuros.

I would book an appt as soon as poss with your gp to discuss what happened and what he is going to do about it.

Pip

Sorry it didn’t go too well, Nikki.

I have a numb tongue and throbbing teeth at the moment. I’ve had it for months.

It makes me so mad when they don’t take your symptoms seriously. I’m in the same position at the moment - the neuro/gp just do not believe me!!

I have a diagnosis unlike yourself but am in need of help with my symptoms. I’ve been struggling for 18 months now but i just get a funny look and have been sniggered at also.

Try to keep positive. Thinking of you.

Teresa. x

Hi Nikki

I also have a numb tongue with wrong temperature sense just on the L though. You can see from all the posts that your doctor didn’t know what he was talking about.

It’s so frustrating not being listened too. I’m not diagnosed but my neuro (MS specialist) is a bit of * too.

Please don’t give up or get disheartened. Did he not suggest an MRI or have you had one already with the other neuro? How good is your GP - maybe it might be worth speaking to them and getting referred elsewhere for a second opinion.

(I still can’t believe he said you’re being hormonal!).

Let it out - you’re allowed to be upset. I ranted and raved bout it for days and really felt like crying. Treat yourself to something nice pamper you tonight and then tomorrow get up and think about how you want to tackle your situation.

A big hug Nikki. Once again I’m so sorry you had such a bad experience. It’s so frustrating. I wish there was something that could be done so people like us didn’t have to suffer being fobed off.

Reemz

X

Thanks again I can’t believe how many of you have a numb tongue! He even asked if I was sure I had epilepsy!!! If he had bothered to read my results he would have seen the test results. I had an MRI about 4 years ago but he hadn’t looked at it he said he didn’t need to. So no tests ordered whatsoever. I have rung my epilepsy nurse and am waiting for her to call me back, it was her that got my appointment brought forward.

Snap I’m like that with drinks. I can’t tell till it’s in my mouth and then half my mouth thinks it’s cold and the other half screams in agony. I can’t say how many times I’ve burnt my mouth in the process. It’s kind of normal for me now!

Hi Nikki

I’m so sorry this has happened. We build ourselves up so much for these appointments don’t we (I do!). It’s so hard to get them in the first place, or we have to wait ages, then to be treated like you have is such a huge let-down.

I think if the Neuros could just feel like we do for a couple of days even, they wouldn’t be so dismissive of us. He really treated you badly. I don’t blame you for crying (I’ve done this too after appointments) - treat yourself to something nice & know that we all understand on here.

It sounds like you have a good epilepsy nurse, so I really hope she can advise you what to do next. Other than that, do chat to your GP.

Most important thing - yes you do most certainly belong here - we’re all in this Limboland together, so please don’t stop posting. ‘Chatting’ to others in the same position is so valuable.

Sending you (((Hugs))))

Bren x

I googled numb tongue and the first site was this one, and here’s me thinking I was a medical rarity! Pip thank you, I’m trying to pull myself together and go on I just feel very let down at the moment. Yes it would be great if the neuros got to experience our lives for a bit. You are all brilliant Xxx

Oh and IveGotLegions believe me I’m getting angry! Xx

Hi nikkinakkinoo, Sorry the neuro was so crap. So many of them seem to be. Where do they get them from? They seem to be a strange and rare breed of human - fairly useless! All you people who have good neuros, hang on to them! I hope you don’t give up. People who get somewhere are those who make a nuisance of themselves, sad but true. Ask for your GP to refer you to another neuro. I hope you get the help you need. Teresa xx

Deep breathes - you have been treated appallingly -40 minutes late and then to rush you - shoddy. I appreciate that you have been through the mill and seen 2 neuros - you really need to see the third who is the ms one. A hassle yes but our road is a bumpy long one Hugs Min xx

How are you feeling Nikki? Hope you’re feeling less angry and stressed. Try not to get overworked - last time I saw my neuro I was so worked up my bladder played up again. The last thing you want is to flare up more or new symptoms because you’re stressed. Talk to people about it let it out - it was the only thing that made me better. I vented and told anyone who knew and was willing to listen. It doesn’t change the situation but it helps to talk.

My partner gave me some great advice by sayin ‘thinking about neurologists: The first step towards getting somewhere is to decide that you are not going to stay where you are.’

You don’t have to accept your situation, frustarting though it is to come up against so many blocks don’t give up. And as one of the other ladies said. Though we don’t like kicking up a fuss sometimes it’s the only way to move forward.

Big hugs, hope you feel better and find a way to move forward.

Reemz

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Have you had a full eye test at opticians? Just asking cause I have migraines too. Had areally bad one early Dec and lost use of my left arm, happened before years ago, but this time did not regain full use of arm. Anyhow was getting double and blurred vision so went to see optician. Only to be told I did not have optical neuritis but a smaller left than right pupil, a squint that had changed direction and a dropping eyelid! Waiting to see eye specialist. Seen Neuro who has put me on beta blockers for my head, took them years ago and seemed to work, been on them since Thursday, no improvement yet. Waiting for brain and spine MRI to look for poss MS. They can tell alot by looking at your eyes.

Have you had a full eye test at opticians? Just asking cause I have migraines too. Had areally bad one early Dec and lost use of my left arm, happened before years ago, but this time did not regain full use of arm. Anyhow was getting double and blurred vision so went to see optician. Only to be told I did not have optical neuritis but a smaller left than right pupil, a squint that had changed direction and a dropping eyelid! Waiting to see eye specialist. Seen Neuro who has put me on beta blockers for my head, took them years ago and seemed to work, been on them since Thursday, no improvement yet. Waiting for brain and spine MRI to look for poss MS. They can tell alot by looking at your eyes.

Wow Apple Ipad - I’m not an expert but this sounding a little bit like a third nerve palsy (the third cranial nerve supplies the pupil, lids as well as 4 out of 6 of the eye muscles) to me but remember I’m only going off your description. I’m suprised the opticians didn’t tell you to go to eye casualty (I hope you have an appointment soon). It’s good you have a brain and spine MRI - it’s what the ophthalmologist most likely would do as well as get you to see a specialist in the department who documents and looks at eye movement disorders.

Also from what a few people have said on these forums migraines or headaches can be quiet common in MSers - I’m just suprised your arm function didn’t recover. Are they sure this isn’t all linked together. Sorry I don’t mean to put a spanner in the works - what do I know? I was just worried for you - squints don’t usually just change direction. I hope they give you some answers soon hun.X

Reemz

I get bad migraines when my thyroid levels aren’t right. The opticians can refer you to hospital via your GP.

Sorry your app was just shocking. ((hugs)) and support xx