I've seen a neuro...

[Twinmummi123]

I have just had my neuro appt, he said there was a possibility of MS but I am quite old to get it? (I am 40) He said my white spots could just be my age too. But due to my 'very mild' symptoms he is doing blood tests and will arrange a lumbar puncture as well. I asked him about the tight chest and muscle pain in my arms and he dismissed that as anything relevant.

[Sailorsong]

I have to agree with the others about the Neuro you saw being lousy. I was 61 when I got my MS DX and first symptoms at 41. While waiting for my DX I had several Neuros that I saw tell me I could not have MS because I was not a 35 year old woman.

It is too bad there are so many Neuros out there that don't know anything about MS, but even more disheartening is that they don't seem to want to learn about it either. I get my health care through the VA and had a couple of Neuros tell me they knew nothing about MS. But at least they sent me to a MS clinic outside of the VA system where my MS was confirmed after they did a MRI of my spine.

Also as ess said a negative LP does NOT mean you don't have MS. I had 2 LP done and neither of them had o-bands. The 2 LP were done about 20 years apart.

Dennis

[essdipity]

I have no idea whether you do have MS, but I know you have an incompetent neuro on your hands. If he doesn't know the basics of MS, I have to ask what else he doesn't know. A big vote of no confidence from here. The LP is helpful if positive, means nothing if negative, so I hope he isn't a dufus about that as well.

I'm not knowledgeable about the NHS either, and the American way does have its advantages, maddening though it can be. But there has to be some way to manipulate the system, because there's always a way and people figure it out. With luck you'll be able to bypass this jerk and see someone who knows what he or she is doing.

ess

[Twinmummi123]

It is helping greatly to discuss this here! I don't feel so alone and so much of a hypochondriac. I didn't mention the fatigue or incessant itching to him as I was feeling over whelmed!

Corriel, I have seen an ophthalmologist as I was referred by the optician (who thought I had something called pigment dispersal syndrome) he decided that it wasn't pds and my eyes looked OK, he mentioned something called Utoffs syndrome...I have another check up with them next week.

I'm hoping I don't have to wait too long for the LP.

I will definitely take my husband to the next appt, I'm just feeling worried as he was so opposed to it being MS, I didn't even ask what it could be causing the problems! I may need to write a list for next time, although I don't like to look like I am a know it all patient, it seems that's what I may need to be?!

[TLC1104]

Glad corrie helped you (& me) with the LP and blood  test explanation.
Thank you
T

[TLC1104]

Try not to feel stupid,  you are there as you have something going on that does need sorting, and by them......It is strange how you can feel all these different things in one go and have no clue what is going on. I did the same when I first thought there's a possibility it could be MS when I was in hospital,  my own doctor was the one that said to me,  why don't you try and find a forum site where you could speak to people who are actually dealing with MS and maybe talking to them will help.....It has definitely helped me and still helping. Hopefully it will help you, you'll get that what you are going through others have too and even just talking about it & how you are feeling makes it easier when you are talking about it on here.  
T

[Corriel]

No wonder you were upset during the appointment. He sounds like a bugger.

Others will chime in but the LP looks for oligoclonal bands in the cerebral spinal fluid. MS is a diagnosis made using (typically) the McDonald Criteria.

When they do the spinal tap (lumbar puncture) they will also do a blood draw and compare. If you have 2 or more of these bands in your spinal fluid that do not co-exist in your blood then it can help pin down what you are dealing with or not dealing with when it comes to illnesses.

Any symptom that causes you stress or interferes with your day to day is NOT considered mild in my book (and I doubt in anyone's book here). That is just nonsense.

Because you mention blurriness is there an option to see an ophthalmologist or neuro-opthalmologist? It is possible that you might have optic neuritis which may also help narrow down the diagnostic puzzle.

I am so sorry that you have to deal with this insensitive neuro and if it is not possible to switch maybe you can bring someone with you to your next appointment so that you can be heard even if someone else is speaking on your behalf.

A lot of news to absorb at once and it is also worth contacting your local MS society/association. They often have information to share even if you are not necessarily diagnosed with MS.

Hang in there,
Corrie

[TLC1104]

The consultant said the LP showed inflammation, the blood test looks at anything else that could be going on.  (They do take alot though. Haha) Mine came back normal so that's when having the LP gave answers. To be honest I still don't know why the x-ray was done,  haha.
T

[Twinmummi123]

Thank you so much for your replies!

He told me that my symptoms are very mild (they don't feel it to me) he wasn't going to do any further testing but due to the blurring I am getting from excercise and heat, he said it may be worth it. He also told me that there would be nothing they could offer even if it was confirmed and he is certain it won't be. I have to say I felt a bit stupid in the appointment, I don't want it to be MS and I cried when I left the appt. the nurse told me to go home and Google MS symptoms and make myself aware!

Wow, the difference in treatment is vast isn't it?

Can I ask, what does the LP show and also what is the chest X-ray and blood tests looking for? I had 10 vials of blood taken haha!  

[savvycs]

I was just diagnosed at 52. I am new to the group; but find the knowledge and wisdom of this collective to be phenomenal.  They are sincere and compassionate and feel your stress, pain and confusion. Good luck!

Gina

[TLC1104]

Hi,
I'm in uk and under NHS too, I'm 44 (sshhh about that though haha)
maybe as been said you need to get seen by a different neurologist.  I don't know whether I've just been lucky who I had dealing with me on the NHS but
since july this year when I was admitted to hospital after going to my doctor with different symptoms in two days, I had CT and MRI scans, chest x-ray, numerous blood tests & a Lumbar puncture done.  The consultant I had in the hospital phoned me at home as I was discharged from hospital to wait on LP results letting me know what the results showed and also allowing me to contact him if needed more information,  he referred me to a specialist consultant for the confirmation of the findings & whilst waiting on that had a physio sorted for me & MS specialist nurses who are there for anything needed, had The first appointment at home for the nurse allocated to me to intrduce herself (& she is lovely) and she took information from me and she gave me all the contact details and what they are there for. The longest wait was for the specialist appointment which I had that yesterday and confirmed MS diagnosis. As much as I didn't want that to be what he was telling me I've got to get my head round it & go from there.....hopefully if they are sorting out a Lumbar puncture you'll finally get some answers, I do hope you get the help you need.  Oh, and on this site you'll find the loveliest people ever! They are amazing!
Take care
T

[Corriel]

I agree with what has been said. I was a couple of weeks shy of 42 when I got my MS diagnosis and my neuro had told me during my first appointment that if it was MS (and he didn't think it was because I didn't present typically and was "older" than the norm).

He said if it was MS it would be benign and not require treatment. I went ahead with a lumbar puncture anyway and when the results came in my neuro immediately diagnosed me and asked me which drug I wanted to start my treatment with.

Sometimes they do better in the second appointment but definitely keep your options open if you can,

Corrie

[kwarendorf]

Hi TM - Welcome to the group.

Sorry to hear that you get what you get Doctor wise. I was diagnosed at 51, and I'm male :-) Maybe your LP results will get his attention.

Kyle

[Twinmummi123]

Thanks...I am in the UK and under care of the NHS...I just see who I am given?!

[supermum_ms]

Hi and welcome,

I would suggest you seriously consider finding a neurologist that specialises in MS, any neuro who states someone who is 40 years old, is quite old to get MS, doesn't know Multiple Sclerosis! The common age range of diagnosis is between 20-50 but MS can happen at any age, it's just out side the 'common' age group.....

Food for thought......JJ

[Twinmummi123]

Oh and he is sending me for a chest X-ray too.