don't know whether to cancel appt

Thankyou Chris, can I ask whether you had had an MRI to begin with and also whether you have seen the same neuro all along?

I'm not sure I can deal with what they tell me, I don't think I could cope with an 'undiagnosed neurological condition' label, which is what many people seem to get, but equally not sure about getting a definite diagnosis either, so the neuro can't win! I think had the first neuro not been so offputting when I saw him and if I hadn't had a clear MRI I would definitely go. Confused!!!!

Thankyou again

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

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

I went into hospital on tuesday the 21st feb and was told that i have spinal stanosis. when i was therethe consultant did a reflex test and sensation test to which the consultats spoke to each other and said that from my knees down are vertually non responsive, then then turned to me and said that they are supprise i am still walking around and that if i get any weaker i will end up in a wheel chair. they also said that there is not much they can do for me. i am scared that this will happen and i dont want to become wheelchire bound and become a burdan on my family.

I have thought about ending my life because of the pain and all the pain medication i am on and just cant go on anymore, even though my boyfriend has said that no matter what happens he will be by me no matter what i just dont want to ruin anyone else lives by having to look after me. 

I dont know where to turn or what to do any more can anyone help me 

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 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

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.

Oh my goodness, I am still amazed at how many people are on this rollercoaster, and some of you (Poll) for so long. Thankyou for sharing your backgrounds with me, it has really helped me focus. I had a long chat with hubby last night about how I thought things had improved, and he said that he didn't think they had improved as much as I did, he says he has seen me change the way I do things so I don't rely on the weak side, the fact I now cut short my activities etc, or don't do them at all. The really upsetting thing is, I think he is right and  things aren't as good as I was leading myself to believe. We were really busy yesterday, putting new furniture up in my son's bedroom, and with that the obligatory spring clean. This morning I took the children to school and went to do the shopping, I am really struggling with walking and pushing the trolley was incredibly difficult, my legs are so stiff and my left leg (the good one) is buzzing from the knee down to the toe. 

I have now made an appointment to see GP tomorrow to discuss my fears, but WILL be going for that appointment with the neurologist, and I will ask him about the possibility of something to help with the stiffness.

Thankyou x