Worried about Neuro App Monday

[Katie]

I am really worried about my appointment Monday, I have waited 13weeks for this and initially only requested a referral because of uncertaintanty about the cause of my face pain. Since that time, over 3 months, the TN pain has been excruciating at times and I have started to acknowledge the other things going on with my body. The stabbing in my feet and arms and hands, restless legs, leg feeling wierd etc.

I do however, tend to get a few weeks where I feel generally ok, used to be a few months but not anymore. SODS LAW, it is now that I am feeling ok and yet I was on the phone begging for an earlier appoint ment 3 weeks or so ago.

I am really worries I am not going to get things across well because I am not feeling totally depressed and fed up and in despair like I am often.

Sorry to drone on!

Katie

[vix]

Hi Katie

 

That post is not droning on in the slightest!!!!!

 

I am glad that your appointment is on its way, but remember it is about how you normally feel and the pain and distress that you feel when you are bad.

 

Can I suggest that you take someone with you who has seen you in the pain having the problems so that then there is two of you explaining to the Neuro what has been happening. It is also a good idea to write things down as to what it is that you feel (or dont feel) how long it has lasted for etc.... I know that it sounds silly but it is a good thing to do

 

Vix

 

xxxx

[Katie]

Can I suggest that you take someone with you who has seen you in the pain having the problems so that then there is two of you explaining to the Neuro what has been happening. It is also a good idea to write things down as to what it is that you feel (or dont feel) how long it has lasted for etc.... I know that it sounds silly but it is a good thing to do

 

 

Thanks so much Vix

 

I am taking my husband although he is not the most vocal of people i'm sure he will chip in if necessary.

I have also made a list. I will just have to keep fixed in my head how bad I have felt as I dont want to be dismissed after waiting so long.

 

Also, has anyone joined BUPA and has it been helpful too?

[Hezza]

Hi Katie,

Try not to worry too much about the appointment - neurological symptoms have a habit of coming and going and the Neuro, of all people, should understand that. I'm glad to hear that your husband will be with you. My hubby is not the most vocal either but just having him by my side at appointments makes a lot of difference.

 

As for BUPA cover - I had it through work when my 1st symptoms emerged so all of my initial neuro appts and tests were performed under BUPA. Once diagnosed I transferred to my Neuro's NHS list as I wouldn't have received continuous care under my BUPA policy. TBH, and this is purely my opinion, the BUPA cover was very helpful in getting all my tests quickly and a relatively fast diagnosis but now that I am diagnosed I'm happy to be under NHS care. I have an MS nurse who I see quarterly, am prescribed one of the disease modifying drugs which is delivered to my home, and see my Neuro annually for review.

 

I don't know, but suspect, that as you're already undergoing investigations there may be a clause which would exclude treatment for "pre-existing conditions" were you to look to take a policy out now. I could, however, be wrong about this but if you are going to look into BUPA cover please check before you pay out anything.

 

Good luck for Monday

[vix]

Good luck and best to take hubbie with you, before you go give him lessons on how to be vocal LOL

 

Seriously it is true a neuro should understand that symptons have a habit of coming and going when they feel like it and there is nothing you can do to make them stay and for how long they stay for.

 

I go to my London Neuro at the end of this month an my OH is coming with me I wont go to my appointments on my own cos I am likely to forget what I wanted to talk about LOL

 

Vix

 

xxx

[linds]

In a way I think they almost expect to see someone with you when you have appointments. They always have 2 chairs. Loads of luck

[Dianni]

Hi Katie,

 

I always take a list and hubby to GP and Neuro appts! As others have said, neuros especially seem to expect 2 people!

 

Good luck on Monday and try not to be too anxious.

 

Hugs

 

Di

xxx

[goonasi]

Hi Katie,

 

Like Dianni I too am armed with a list of notes & questions to ask and 9 times out 10 on the way home there is always somthing else that I've remembered that I wanted an answer to.

Make the most of your appointment.

[Wish]

Hope your appointment goes well Katie, take the list and your OH with you, I felt so much better having the list and OH with me. Sounds daft but I think I got taken more seriously with OH present he was able to verify how I was before the symptoms started and how downhill I had gone and how my symptoms have impacted on my life and that of my family.

 

Best of luck, let us know how you get on. xx

[Katie]

Thank you so much everyone, what you have all said has really helped as I have really been worried. You all know how it is - having to the make the most of the appointment as you have waited so long for it and it is so important to you.

 

You all make me laugh and feel not so 'alone' with all this, without being too depressing.

I really do appreciate it.

 

I will do as you all have suggested and take the list and I will talk to my OH about being more vocal LOL! (Vix).

 

I will keep you posted!

 

Katie

[Wish]

Hi Katie

 

Was thinking about you roday and wondered how you got on at your Neuro appoinmtment?

[Katie]

Hi Katie

 

Was thinking about you roday and wondered how you got on at your Neuro appoinmtment?

 

 

Hi Wish, thanks for thinking of me. I had to go through everything again and he appeared more foccused on the TN although then decided he didn't think that was the cause of the face pain anyway. He started to say more often thats old people so i'm to young for that but I dont think thats the case. Saying that, I have never been too comfortable with the diagnosis of TN but when he suggested migraines I wasn't happy.

Anyway, I said pretty much all I needed to say and he checked my eyes with a light and said ' the right eye is reacting a little strangely'. Do you know what that means?

 

I had thought he was taking no notice of the problems with my leg and stabbing pains etc but he ended with sending me for numerous blood tests, including testing immuniglobins and connectives?? He also is sending me for an MRI of the brain and some tests involving electric signals sent through your feet and also lights flashed at you and then watching how it all affects your brain??? Do you or anyone know about these tests and if they have any relation to MS?

Thanks again Wish, its nice to know people care, my husband was great today but it amazes you how many other people who apparantley care dont seem to call.

Katie :wink:

[Hezza]

Hi Katie,

Thanks for the update, I was thinking of you earlier too.

 

I had electrical stimulus to my feet at the same time as I have my Visual Evoked Potentials tests. What they are looking for is how your nerves react to a stimulus and checking how quickly the messages get to your brain. Delay could indicate some damage or interference with the nerve.

 

You'll find more info on the visual test in this thread

 

Take care :wink:

[DizzyDora]

Katie, I can empathise with the friends bit. Two of my friends nowdon't bother to get in touch since I'm becoming disabled. It hurts very much, I was always there for them and would do anything for them, sympathised if they were ill and listened to all their problems. I've always treasured and am always loyal to friends. But now it's my turn the phone calls have dried up

[Wish]

Hi Katie

 

Firstly ((((hugs))) (can't find hug smiley.

 

Hope you are ok, glad the appointment went well and that the Neuro seems to be taking it seriousley, hope you don't have to wait too long for the tests.

 

Keep your chin up xx

[Michelle]

I know what you mean DD. Maybe they think it's catching I am no longer in contact with many of my friends. They say,we must meet up for coffee,but it never happens - even if I say the time and place. I have now moved on,and enjoy different friendships It still makes me wonder though

 

M x

[Marina]

Firstly ((((hugs))) (can't find hug smiley.

I could've sworn that in the 300+ smileys we have, that there was on for a hug... So I've now added one Hope that makes all who wanted a hug feel better!