Hello,
This is my first post. I apologise in advance if I have posted in the incorrect place or way…if so please point me in the right direction.
My story so far…I experienced a few months of pins and needles in my fingertips and eventually went to see my GP. I started a six month period of tests with no conclusion and was advised that I was likely overweight and needed to cut back on alcohol (despite explaining that I was a very occasional drinker). A little frustrated I contacted Bupa for a second opinion. This started more tests including electro to check nerves, MRI etc… Neurologist called me in for results, I expected to be given all clear, but was told there were two lesions (one on brain and one on spinal cord) on MRI. He felt that they looked like they were of different age which would be clear sign of MS but that there is no way to be clear. He said that he was 60-80% sure it would be MS but that if ever there was a time to be diagnosed it was now as research is taking huge steps forward. I was referred to MS specialist back with NHS.
I have now had two annual appointments with the specialist to discuss an MRI that happens six months prior. It was explained that MS is likely but cannot be confirmed until a new attack or lesions are found. I had latest MRI in April.
Today I received a letter from specialist stating that a new small lesion was evident on latest MRI. He states that this “would push us towards a diagnosis of MS” but as I am not presenting with any significant symptoms that he would not advise any treatment. He has advised that we can discuss at our next appointment in November.
Does this mean I have MS?
I still have had zero clear symptoms other than the odd tingling in my fingers (mainly left hand). In the last six months I have lost 25kg and I’m fitter and healthier than I’ve been in years. The letter today is a total shock.
I am going to try contacting them tomorrow to speak to someone in the department.
Is there anything else I should be doing? I have been reading similar stories on the forum and many people talk of having a lumbar puncture to get clarity…is this something I should push for?
Any guidance from those of you with more knowledge or experience than me would be much appreciated
Thank you
hi wanderlust
the letter that you received yesterday said that “a new small lesion was evident on latest mri. this ““would push us towards a diagnosis of ms”” but as you are not presenting with any significant symptoms he would not advise any treatment”, sounds to me like you have been told you have ms but will not be given the option of a DMD at this point.
i would do as you are planning and contact the department for clarification.
if my understanding is correct, you will have the answers that you need as to what is causing your symptoms.
DMDs are a two edged sword because although they promise to reduce the severity and frequency of future relapses, they all come with side effects.
so try not to worry too much.
carole x
Hi Carole, thank you so much for taking the time to reply. I’ve been in touch with department this morning, waiting for a call back.
Hello
Your post is utterly correct and in the right place, format etc.
Welcome. To the place no one in their right mind wants to be!
It sounds to me that you have indeed been diagnosed with MS. But as Carole says, being unsymptomatic, not prescribed any disease modifying drugs (DMDs) at present. In fact, the neuro might have trouble justifying such a prescription since the NICE criteria for DMDs is to have had 2 relapses in the previous 2 years.
So to take DMDs at this point would be possibly to invite side effects into your life to fix a problem that isn’t active right now. It’s worth your finding out what you might take in the future though. You could have a look at: MS Decisions aid | MS Trust
Well done for losing all that weight. It’s a massive amount to have lost, I’m very happy for you. It must make you feel 100% fitter than before. Which is why this diagnosis comes as a bit of a shock.
You may find it helpful to do more research into MS. I recommend using the ‘About MS’ tab on this site as well as the pages from the MS Trust as being reliable.
Feel free to post on here in the Newly Diagnosed or the Everyday Living Forums when you have questions, queries or just want to share your thoughts with people who understand.
Sue
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So…I was given an appointment with my Neurologist today. He confirmed that the new lesion although small was confirmation that I have MS. As stated in the letter he does not believe I should start any treatment due to the fact that I am not suffering from any symptoms that are impacting my life and therefore the risks of DMDs are not justified. I will continue with annual monitoring and I need to be self aware of any change in symptoms. We discussed this at length as I still worry that I could miss symptoms. He is also referring me to been seen by the MS Nurses. Not the news I was hoping for but there is some comfort in the clarity after over two years of analysis and review.
Good afternoon My name is Julie and this is my first post - I am sorry if it is too long and is too detailed. I think I have been diagnosed with MS but I am not really sure. I had an MRI done privately in February because my Osteopath was unable to sort the problem in my neck / shoulder after nearly a year on appointments every two weeks (spent a fortune). He was expecting it to show a bony spur but instead it showed focal lesions and recommended referral to a Neurologist. I was very fortunate to get an appointment within a couple of weeks, all of my reflexes were normal. After reviewing the MRI it was decided to do a head and spine MRI with contrast. This was done in March, I didn’t hear anything for 6 weeks so thought no news was good news. I then got a phone call requesting I have a lumbar puncture done. I have a needle phobia so this was a massive ask for me. I had hypnotherapy to try and get me through it and drugs to calm me but unfortunately I couldn’t tolerate it. Yesterday I got a copy of the letter that has been sent to my Consultant (who I have not met yet) giving the results of the MRI which I don’t understand - the conclusion is white matter lesions in the brain and cervical cord support a clinical diagnosis of demyelination. It goes on to request that I am seem by the MS team regarding my diagnosis and the possibility of DMTs. This is all so over whelming - I don’t think I have any symptoms, I am a fit and healthy 53 year old, I ran my first half marathon in February, my first marathon is scheduled for October. I managed to speak to the Consultants secretary, I am sitting here waiting for a call back from the Dr who wrote the letter to explain things to me. If anyone can point me in the right direction to read up on MS, DMT’s side effects etc I would be extremely grateful. Julie
hi julie
the MS trust have loads of information about DMDs.
try starting a new thread so that it will be seen by many others.
go to everyday living and near the top you’ll see “new thread”.
there is a fab lady called sssue who can even provide the appropriate link to the ms trust page.
carole x
Oooer Carole, ‘fab’ am I?
Julie,
You’ve had one hell of a shock. Don’t let it take over your life. It sounds like you are very fit, and that will help you immensely in the future as you journey through the myriad of information that will now besiege you.
The first place I would suggest you look is Newly diagnosed | MS Trust The MS Trust (as well as this site) have a lot of information on symptoms, expectations, drug therapies and alternate therapies.
The second webpage I think might be helpful is MS Decisions aid | MS Trust It’s a good idea to familiarise yourself with the various drug treatments available.
Once the MS team get the referral, you’d normally be assigned to an MS nurse who will guide you through potential drug treatments. You, and s/he may decide that as you aren’t experiencing relapses and don’t have symptoms, at present a DMD (disease modifying drug) isn’t wanted or needed, but you can always revisit that question later on.
Do come back to us with your worries and questions. We’ll do our best to help. You can always start a new conversation by hitting the New Thread button.
Good luck.
Sue
not only fab but a fab lady!!