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don't know whether to cancel appt

I have been watching and reading for a while, and am terrified by how many people are undiagnosed and then just left to get on with things. So, I have decided to ask for your opinion. I am due to see a neurologist next week. I saw one neurologist last year after a bout of clumsiness, poor balance,  weakness on right side, and urine retention. It all started with tingling and then a loss of sensation in my right toes. The  neurologist said I had brisk reflexes on the right side.I had a brain and neck MRI which was clear so I wasn't followed up. My GP has asked for a second opinion as he feels that something is definitely wrong as six months later, I have been left with some weakness, particularly in my leg. I try to exercise but can only manage a few minutes and then get drop foot and my leg goes all weird. I can't feel it or lift it properly for a while. If I try and lift it it goes all jerky. This improves after some time. I nearly always get drop foot in the evening along with stiff lower legs which worsen as the day goes on, and get much worse following a shower. 

Sorry for the ramble, but having read all the posts recently, I'm not sure I can face the appointment with the new neurologist. I already feel like I must be crazy, and the thought of seeing someone else fills me with absolute terror.  I am not getting worse, infact most things have improved, although not completely resolved. I already know there is nothing life threatening as my previous MRI was clear, so I think it won't do any harm to just cancel the appointment and wait and see for a while longer if things continue to improve. I don't want to offend my GP by cancelling the appointment as he has been an absolute gem and I feel like he has really stuck his neck out for me, (although I did not ask for a second opinion)

Again, sorry for such a long post, but after being quite relaxed about everything, I suddenly feel stricken with fear, and it's all linked to seeing the consultant. If I do cancel the appointment, what do I tell my GP, also if I don't cancel, could I just postpone for a few months?

Thankyou for reading this.

Hello Anon and welcome to the site.
I just wanted to tell you of my experience. I started feeling strange just over a year ago, clumsy, tripping up a lot and strange sensations. My gp like yours referred me to a neuro. The neuro categorically told me “you do not have ms”.
One year on an this week I am told actually you do have ms and new neuro wants to see me next month. This was after my gp referred me to a different neuro.
Neuro appointments don’t come easily and if you think you can deal with what they tell you I would definitely go. The best thing that could happen is them tell you why your body is misbehaving, the worst that you’ve wasted your time.
Good luck with whatever you decide,
Chis

Hello anon    I would certainly advise you keep this appt,  if you read back your post and think of it as someone elses would you think there was nothing wrong with them? i think not.  there is medication to help with your legs,I have baclofen and its a huge help with my legs that are similar to yours,and the gp gave me this before I even saw the neuro.

My symptoms last year used to go completely after a few weeks of stumbling around like a drunk so I ignored it.After having to go to the neuro because of work all of those episodes suddenly became the reason why they are starting me on dmd.

I am sure karen can give you better advice on how to approach the appt or read other posts she and others have written and im sure it will give you the strength to see you should go. Do you have someone who can go with you in case you struggle with what you want to say when you are in there?  

your call but please think carefully

Pip

Hi Anon

It's normal to feel scared when we're thrust into the unknown and I think that most of us - particularly throughout the diagnostic stage - have at some point felt like we're going crazy or losing grip, but the reality is different.

Last year your symptoms concerned you enough to see a neurologist - in my opinion the fact that your mri scan didn't throw anything up doesn't necessarily mean that there's nothing wrong. It just means that it may require further investigation. There are lots of conditions that can have ms type symptoms.

I can understand your reluctance to have to go through the process again but if your GP has requested a 2nd opinion on your behalf then I think if it were me then I'd go for it.

Ultimately, this is entirely your call. It's up to you. As you've said in your post, you could take the wait and see approach - but equally as you still have symptoms would it not be better in the long run to bite the bullet - so to speak - and see the new neuro? 

If you do decide to see him then go prepared. Make notes of what happened last year, what your symptoms are now etc etc. Everything that you can tell the neuro will help him/her. Taking someone with you to the appointment - for support - can make a tremendous difference too. A family member or close friend perhaps?

Whatever decision you come too make sure that it's the right one for you.  

Good luck

Debbie xx

Sorry Anon

I forgot to say that once the medics know what is causing your symptoms then you'll have access to better medications and support - which can make a huge difference to you on a day to day basis!

Debbie xx

As Debbie says, it's completely normal to be feeling scared. I reckon anyone would! The thing that strikes me though is that you actually already have an undiagnosed neurological condition and only by seeing a neuro do you have a chance of finding out what it is. If you think about it, the worst outcome that can happen is that you end up exactly where you are at the moment. So please keep the appointment?

 

What you wrote on here is a perfect summary - you don't need to tell the neuro any more than that so don't stress about symptoms lists and previous results etc - just go and tell him/her what you told us:
"I saw one neurologist last year after a bout of clumsiness, poor balance, weakness on right side, and urine retention. It all started with tingling and then a loss of sensation in my right toes. The neurologist said I had brisk reflexes on the right side. I had a brain and neck MRI which was clear so I wasn't followed up. My GP has asked for a second opinion as he feels that something is definitely wrong as six months later, I have been left with some weakness, particularly in my leg. I try to exercise but can only manage a few minutes and then get drop foot and my leg goes all weird. I can't feel it or lift it properly for a while. If I try and lift it it goes all jerky. This improves after some time. I nearly always get drop foot in the evening along with stiff lower legs which worsen as the day goes on, and get much worse following a shower."

 

I'm rather surprised that the first neuro didn't do a spinal MRI scan - your symptoms are associated with spinal lesions rather than brain lesions and as many as 10-20% of people with MS only have lesions in their spine. This is another reason why I think it's a good idea to keep the appointment - maybe this neuro will be more thorough?

 

One thing is for sure: you are not crazy! No one can make their reflexes brisk - it's actually impossible. Your symptoms are very real.

 

I really hope you go and that you get a lovely consultant (they do exist!).

Karen x

Hi Chris, and welcome to the site

I don’t know a lot about spinal stenosis, but one thing I can tell you for sure - life is still worth living, even if you are disabled and pop dozens of pills every day. There will still be plenty of opportunities to laugh, love, travel, do interesting things, meet interesting people, share your life with friends and family and who knows what else.

Getting a proper support programme and decent meds that control your pain and other symptoms will make a massive difference so make sure and nag every medic you come across! Start with your GP - it is their job to help you - don’t let them get away with not doing it properly!

Most of all, remember that you are still you. Your body may be letting you down, but your body is only the packaging; the insides are still the same. You are still you.

I don’t know if you’ve had a look on the internet for a spinal stenosis forum yet? Here are a couple that came up on google when I had a look. They’re American ones, but might be a good start? http://www.spine-health.com/forum/conditions/spinal-stenosis and mdjunction.com

Hang in there. Life can still be good.

Karen x

Hi, well my story probably won`t ease your fears, but personally,  i do think you should keep the appointment.  Different folk react in different ways when hearing they either do or don`t have MS. Some actually find relief in knowing exactly what is wrong with them.

As things have improved for you, then maybe you could postpone the appointment. If you explain your fears to your GP, I`m sure he/she will understand.

I have seen 13 neuros in as many years and they keep changing my diagnosis from PPMS to HSP...........which is very similar to MS.

I am totally disillusioned with neuros after all this messing about.

If you do receive a dx of MS, it could take some accepting, but please remember, there is still a life to be lived and enjoyed.

Good luck.

luv Pollx

Hi Chris, welcome and (((hugs)))

Your first port of call is your GP - better pain management is clearly a must! This will make a huge difference to you. If you aren’t able to get to the surgery then ring and ask for a telephone consultation - your GP is there to help you! Also ask for some help in terms of support - there may be a more specialised website or a local group you can join - and other services available to you.

You OH has made his feelings clear - he’s there for you regardless. I think most of us do or have worried about the future but the upshot is that no one knows what it is. There are times when I really worry about my own but whatever that may be I have no control over it. I do have control though when it comes to what I do about it - when whatever happens, happens.

Once you have better control over the level of pain that you’re in and have had more time to adjust to the news then you can start to look forwards. Your diagnosis has rocked your world, yes, it’s bound too you’re only human after all. But it won’t always be like that and it’s not changed who you are.

Start looking at getting the help that you deserve Chris. Let yourself have a decent, happy and enjoyable life with your OH who clearly adores you.

Good luck

Debbie xx

Hi Anon,

I can understand your fears about a second opinion. I was given the ’ undiagnosed neurological condition’ label 18 months ago. Most of my tests were positive for M.S. - lesions on brain MRI and positive evoked potentials etc. but I had a negative L.P. and my neuro said he could not diagnose me. I did not want to see another neuro ever as the last one had made me feel so awful about the whole situation.

However, I was recently persuaded to seek a second opinion from another M.S. specialist. It took an awful lot of persuading by my family and my physio who said that I could not carry on as I was with 3 relapses in the last 18 months. I was really nervous before the appointment and felt that I wanted to cancel it as well but I told myself I had to go through with it for my family’s sake as well as my own.

The new neuro diagnosed me with M.S. two weeks ago and I know it sounds strange but I am now so glad I went to see him and have finally got a diagnosis. Ultimately, I feel it has to be better to know what you are dealing with and it helps you to move forward. With a diagnosis I now have the support of my MS nurse, physio and I am due to start D.M.D.'s soon.

I hope my story has helped you in some way. Sending you good wishes.

A x

Hi Anon,

Just wanted to say you don’t have to be crippled by spasticity (stiffness) to be prescribed baclofen. It’s enough that it’s causing you difficulty and/or discomfort. You certainly don’t have to demonstrate that you can’t climb stairs - or wait 'til that’s true!

I am, to outward appearances, perfectly able-bodied. Nobody would realise I have a problem. But the hospital prescribed baclofen straight away. In fact, they were annoyed my GP hadn’t done so much sooner.

I know there are a lot of scare stories about NHS rationing etc, but it’s really not so bad that you have to be demonstrably incapacitated before you get any symptom relief.

Tina

I can really identify with the original poster and also several others I've read on here since joining two weeks ago.

My MRI was clear last time and I too was diagnosed with as having neurological symptoms and was perscribed Amitriptlyne.  I opted not to have a lumbar puncture.

For 18 months I have seen, chiropractors, osteopaths etc as I just wanted some relief from the pain but did not want to bother my doctor as I feel like since being diagnosed with ME at 18 (15 years ago) I have been investigated for every new symptom, various consultants have found nothing after running numerous tests and being given treatment that don't work.

I eventually went back to the GP (a new GP) when the pain due to muscle stiffness, mobility issues etc became too much for me, he did some basic tests for balance etc and told me given my symptoms (he actully read back through my history) and that both my grandfather and mother have MS he feels that I do too and he his refering me back for an emergency appointment with a neurologist.

I have taken the advise of others on here and written down my long list of symptoms to take with me.

It wasn't really until I did that that I realised how much the symptoms have affected my especially over the lst couple of years nd all of the things I have given up because of them, hopefully this time they will find something that is treatable that will lessen the constant pain and help me get part of my life back.

 

I can really identify with the original poster and also several others I've read on here since joining two weeks ago.

My MRI was clear last time and I too was diagnosed with as having neurological symptoms and was perscribed Amitriptlyne.  I opted not to have a lumbar puncture.

For 18 months I have seen, chiropractors, osteopaths etc as I just wanted some relief from the pain but did not want to bother my doctor as I feel like since being diagnosed with ME at 18 (15 years ago) I have been investigated for every new symptom, various consultants have found nothing after running numerous tests and being given treatment that don't work.

I eventually went back to the GP (a new GP) when the pain due to muscle stiffness, mobility issues etc became too much for me, he did some basic tests for balance etc and told me given my symptoms (he actully read back through my history) and that both my grandfather and mother have MS he feels that I do too and he his refering me back for an emergency appointment with a neurologist.

I have taken the advise of others on here and written down my long list of symptoms to take with me.

It wasn't really until I did that that I realised how much the symptoms have affected my especially over the lst couple of years nd all of the things I have given up because of them, hopefully this time they will find something that is treatable that will lessen the constant pain and help me get part of my life back.

 

Hiya...yes ive noticed that things you have taken for granted for years come at a cost the next day.It is also very easy to do things a different way to make life easier and they become your new norm and so you dont notice them.

It will be useful to have him with you at the neuro appt as he can explain things from how he sees them.Im so glad you have decided to follow it through and that you have had the chat with hubby.

Dont forget to write you list for neuro/GP  and anything hubby wants answers on aswell in case you forget.

All the best and I hope your having a rest now. Pip