Some advice for newbie

Hi folks…new to this and it’s my first post. After a few episodes of numbness in my arms, legs and in my face, vision problems I finally went to GP in Oct. She immediately sent me to A&E think she feared a stroke because of my symptoms. I was admitted and ct scan x-ray and bloods completed released next morning by consultant saying that he thought it was neurological and he would request MRI and request my GP makes a referral to a neurologist. Fast forward to Jan when the MRI was completed and have just got the results and my GP told me that the report showed abnormalities. I pushed her then and asked what are they and she replied a number of non specific white matter leisons but she can’t diagnose and does not know if they have been causing my symptoms that will be up to neurologist to examine me and dx. I called the hospital to see when my apt is due and told not until September as they are running behind. Now that’s 8 mths away. Suppose what I’m looking for is some guidance is that the normal for these apts, how much would a private apt cost and if it would be worth paying to go private if the report is only showing a number of non specific white matter leisons. Any help/advise would be greatly appreciated

Oh that’s just ridiculous. September! I am so sorry that you are being messed about in this way.

OK, private referrals. I do not know what is the going rate for a private consultation these days. £200, maybe? Others will be better informed. What I would suggest you do is use the ‘near me’ tab on this site as your starting point to see who is the MS specialist neurologist in your area and then investigate who does clinics as your local private hospital. With a bit of luck, the same name will pop up on both categories and that is the woman or man you want.

Shell out for the private consultation - you probably won’t have to wait very long - and he/she can then, if deemed necessary, refer you to his/her NHS list for further investigation. What you have ‘bought’ with your £200 is a fast-track to the next stage of investigation. Even that might not be terribly fast, but it won’t be stupidly long, with a bit of luck.

If you can possibly get the money together, it would be a good investment. Good enough for it to be worth asking family to help out if necessary, I think.

Good luck.

Alison

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Surely they can’t tell you that then leave you 8 months !! now they have your results they may well reschedule your appt by bringing it forward, i know my neuro is booked up 12 months in advance but she rescheduled my 2nd appt with her twice bringing it forward a little each time there was a cancellation, hope this is the case for you

Hi

I agree with Alison, that is just not acceptable. I have have been waiting a while and so have made a private appointment. I just thought it was too important to wait. I think the appointemt with teh consultant nuerologist will cost about £150 and he will look at my recent MRI and one I had done earlier and reach some kind of conclusion. Its with BMI. I cant testify to how good they are I’m afraid.

Best wishes

Rupert

Alison’s reply is absolutely spot on. 8 months is too long. I can’t imagine today’s NHS is allowed to leave you 8 months.

If you can’t get the money together or feel too nervous to enter the private realm, try finding out who your GP has referred you to and see if you can get bumped up the list. Phone their secretary, be nice and friendly and see if there’s any way of getting in sooner. Or try the same thing with the appointments team. See how long you actually have to wait.

Recently I was waiting for a urology appointment to be sent to me. So I phoned the appointments team, they were happy to make the appointment there and then.

Neurology may be different, but it’s worth a try.

Sue

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You could also phone the neurology secretary explain the MRI results are in and ask if your appointment can be brought forward given what your GP has told you. 8 months is definitely unacceptable. Alternatively as Alison says see if you can have a private consultation.

Thank you so much everybody for your quick replies and kind words. I’m going to go back to the doctors tomorrow and ask for some more info regarding the report and enquire about going private…I have appointment with the occupational health dept for my employers as I’m trying to get back to work and I’m sure they will want a lot more info than just abnormalities and non specific lesions. Did anyone else get this sort of result from their MRI or were they a lot more specific.

Again thanks to everyone that posted, it’s much appreciated

Hello,

i think under the NHS Patients Charter you have a right to be seen by a specialist within 18 weeks. I think you should push for this.http://www.nhs.uk/NHSEngland/appointment-booking/Pages/nhs-waiting-times.aspx#maximum

I was diagnosed privately under my health insurance - but still had to be referred back to my Neuro on his NHS books for treatment. The fact that he had seen me privately didn’t allow me to jump the queue (which was about 3 months). However, the initial private appointments did allow us to start talking about the treatment I wanted (lemtrada), to ask my million questions about what everything meant and to start getting my head around the diagnosis. So in that regard the private appointments were very worth while (and I would have paid for them if my healthcare hadn’t).

Good luck

k x

Thanks again for your help. Going to see what GP says tomorrow re this apt from hospital and what she can do of anything…if not then going to ask for a private referral just to get things started so the neurologist can get a look at me and the mri and take it from there…will report back tomorrow…best wishes to everyone

Hi folks just wanted to let you all know…been to gp not happy at all phoned the neuro secretary for me and explained situation…tequested that scan and report be shown to neuro so hopefully speed things up…stated that there is suspicioun of ms. I asked to be talked through mri and doc not specialised but read out 15 leisons in t2 with flair…she isn’t sure what that means by warned me not to consult Dr Google… so hopefully not long for apt…hope all.is well with everyone today…

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That is much better news that you have your gp fighting your corner, sounds like you have a wonderful gp :slight_smile:

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Good. I’m so glad your GP is on your side and is prepared to get involved on your behalf.

She’s right to tell you to stay away from Dr Google. But hopefully soon you’ll get the correct info from a neurologist and if it is MS, then at least you can start some DMDs.

Sue

Hi

Thanks for checking in. Hope u are feeling ok.

Best wishes

Rupert

That is much more like it. A good GP is worth his/her weight in gold.

Alison

Hi folks thought I would update this post. Attended my neurologist apt yesterday and what a disappointment…consultant did not make eye contact, took no real history, gave me a very brief physical…my gp.did a more detailed one, took some spikey thing drove into sole of each foot and pulled up, didn’t feel anything so he did it again and then sniggered that I took that well…he looked at mri and said it could be anything, my physical he said was uummmph ok, he will phone me on Mon as he didn’t have my notes from gp or hospital, he may or may not want a neck mri and more bloods…I paid for this apt and can’t help feeling what a waste…I am in N.Ireland and just wondering about anyone else’s experiences or can you recommend a decent consultant. Will see what he says tomorrow and thanks again everyone

I forgot to say before, the scraping a sharp thing up the soles of your feet is one of the tests for MS, apparently our feet do something peculiar, I can’t remember if it’s that the toes point up or down, the opposite of what most people’s reaction is anyway. (I think, don’t quote me on it!)

Sue

Its called a Babinski reaction. In normal` people (!), when their feet are stroked with the doodah (again !) their toes point downwards…in us they shoot upwards.

On one of the occassions this was done to me and the reaction happened, the nurse and neuro looked at each other and in unison said…Babinski.

pollsx

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Hello

new to this site so not too sure if I’m posting in right place . Have had many symptoms over a year.brain MRI showed multi foci of white matter with a lesion on left anterior temporal lobe. C-spine showed lesion from c4-c7. Positive lumbar punch . Was told yesterday I have a demyelination inflammatory disease. Have to have a 3 day course of intravenous steroid this week. Bit lost on what I have . Does this have a name to go by . Thankyou

Hi Tanya

Sometimes you get more focussed replies if you start a new thread. You just hit the box marked ‘New Thread’, give it a title and away you go.

When you describe where and what kind of lesions you have, it’s impossible for most of us to tell what is meant by the results.

However, a ‘demyelination inflammatory disease’ together with some lesions in the brain and the spine plus a positive LP and treatment by steroids certainly sounds quite a lot like MS, or at least CIS (Clinically Isolated Syndrome). This could be because you’ve had just one attack on your nervous system and there needs to be more than one relapse for it to be ‘multiple’.

But really you need your neurologist to explain what s/he means.

Have you been given the contact details of an MS nurse? You could ask for their help. Otherwise, depending on when you’ve been given another appointment to see the neurologist, you might want to get onto their secretary and see if you can get something more detailed.

Of course, you’d expect the neurologist to write to your GP and you would normally be copied into any letters sent about you.

The next question is what happens next, whether you’ve been diagnosed with MS or CIS (or something else?), you’d expect some ongoing treatment. Even if your diagnosis is CIS, you can get some of the disease modifying drugs (DMDs). Again, you nee to find out from an MS nurse or the neurologist what / where you go from here.

Best of luck.

Sue

Hi folks Just thought I would update you all on what’s been happening. The neuro came back to me after 2 weeks, the poor man had a family bereavement. He told me I have all classic signs and symptoms of ms but the 15 leisons just didn’t fit perfectly into the box so he wanted a c spine mri which I had on tues past with review apt yesterday. The scan was clear so now he wants more bloods done and a lumbar puncture. He is also referring me back to the NHS. He said he ideally needs another positive result to point him in the right direction before he would make a diagnosis. He explained that neuro disorders are a process of elimination and last man standing is what it will be. Although I have had to pay for consultation, mri and then review I recommend it especially if anyone is in same position as I was having to wait until sept/Oct for a consultation the urgent list in n.ireland was 9 mths and I couldn’t wait that long. He has given me a letter to take to my gp to get some meds, the pins and needles.in foot and hand have been so bad I’m almost buzzing…so hopefully they’ll clear that up. Does anyone have experience with a lumbar puncture? Also does the other symptoms I have ever really go away…the messed up head, slow thinking, forgetting everything, the heavy feeling in my face, arm and foot and the muscle spasms and twitches. Sorry for the long message having real trouble sleeping…hope everyone has been keeping well and thanks for reading. Any and all advice is greatly appreciated.