Last reply 2 months ago
Anyone in same boat?

So I was diagnosed with MS in 2018 by a general neurologist after all the tests and on and off symptoms for years, I have 5 lesions on brain 1 on the spine, since then been with a MS specialist who did not want to put me on disease modifying drugs as he wanted to watch me further he believes it’s MS but can’t say yes officially as I am not hitting the criteria for meds, I Had a full MRI last year no change in scans, had one in May of this year and spoke to the secretary today and she says my results show no change again, this was a head MRI no spine, so I dare say when I see the Neuro in a few months he’ll say wait and see again, I’m guessing.

I have had new symptoms from March of this year terrible pain and throbbing in side of my head not like my normal headaches, have been put on Amitriptyline one a day at night, was on it for a month, came off it for 2 weeks then the pain came back, now back on it, very helpful with the pain, my question is has anyone else been through this?, am I at the beginning of MS?or is there a chance this might not be MS.

Thank u X

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itsmewithms
2 months ago

From what I keep reading it takes an average of like 4 years for most people to be diagnosed with MS. It didn’t seem to take that long for me once I had an MRI but my initial symptoms were dismissed as a pinched nerve from a kick-boxing class and it was a couple of years before I had a new attack.

In the US we don’t really have to hit the same criteria that I hear mentioned by people in the UK. As soon as I had an MRI with as many lesions as I had and could think of many symptoms I had had in the recent years I was put on a DMT before there was further progression. I can understand not starting if they are confident it is a CIS but once you have some history and MRIs with lesions on the brain or spine I would think that would be enough. I was also tested for NMO when I had spinal lesions as the DMTs are not effective for that.

I thought the Dr Boster video for diagnosis was a good one-

Good luck- being diagnosed is often a frustrating and long process of ruling out everything else and MRIs and exams…


melmel1
2 months ago

@itsmewithms Thank you so much for the reply, it is frustrating, I kinda feel in limbo but understand my neuro wants to be sure, I was going to change neuros before but I was advised he’s one of the best MS specialists going, lol I guess it’s more waiting for me.

I asked him about NMO he was like definitely not, I’ve had every test goin 3 MRIs eye evoked test, lumbar puncture and all the others in between to rule out other conditions, I see the Neuro is sept what advice would you give like questions to ask him?I know he’s going to say wait and see again, thank you I watched the YouTube it’s very helpful, hope your doing ok how is your MS. X


itsmewithms
2 months ago

That is exactly what people call it ;-0 Limbo land. The uncertainty is frustrating and it makes it hard to plan for the future. I guess we should all do what we can every day but it kind of looms over you. I totally get it.

If you have an MS expert you are ahead of most. I, thankfully, was referred directly to an MS expert at one of our local top universities and once I got to him I was Dx rather quickly.

It was like 10 years later when a relapse couldn’t be seen on a brain MRI that they did a spine MRI and when they saw the lesion there became concerned and sent me for a blood test to check for NMO which I had never heard of! I didn’t want to borrow trouble ;-0 Then to find out that I may have been taking very expensive drugs that were a literal pain to take every day (Copaxone) that may not be effective for my disease at all…I was pretty pissed! the blood test is only a few hundred dollars and they don’t routinely give it at the very beginning? I’m a cost accountant and it totally doesn’t make sense to me…To have spent that much on a treatment that might not be effective…ughhh…but I don’t have NMO and I suppose should just be grateful of that.

Anyways…keep pushing for the Dx. Many talk about keeping a “MS diary” where you write down all your symptoms, their severity and frequency, etc. to help support your Dx and demonstrate the impact on your life. Also think back and try to document your earliest symptoms. When I was Dx I’m not sure if they really thought that much about CIS or I just had a long enough history and convincing enough MRIs that I was just put on Copaxone immediately.

Hopefully you can put together a case and are listened to 😉 we have to be our own best advocate sometimes- Good luck!

Since my early days with MS I have had attacks and relapses, typical RRMS but in the last 5 years or so haven’t had any attacks, which is good, but what I can do slowly slides. I now tire easily and get hip pain in my right hip and foot drop on that side. The foot drop has probably been going on for longer than I realized and the resulting wear resulting in needing a hip replacement. I battle through strength issues on that side. I try to push it too much once it starts to hurt knowing that I can’t muck it up too bad and jeopardize it or my knee or SI joint. I try to behave but am the type that doesn’t always listen to her body very well ;-0 trying to get better at that and acknowledge that I don’t respond that well to pain and make a conscience effort to pay attention to what my body is trying to say-


stumbler
2 months ago

@melmel1

Here’s the NICE Guidance on all the MS treatments :-

https://www.nice.org.uk/guidance/conditions-and-diseases/neurological-conditions/multiple-sclerosis/products?ProductType=Guidance&Status=Published

It’s strange, I can’t find a treatment called “wait and see”!

If you were diagnosed in 2018 with MS, then that seems to be a base criteria for most treatments. You aren’t happy with waiting for a treatment, so what is your Neuro waiting for – it’s not their body!

Neuro’s can be arrogant, so you do need to speak up for yourself. If you want something, then you need to assert yourself and demand it. Just do it politely.


melmel1
2 months ago

@itsmewithms glad it’s not NMO you have, you have really been through the ringer ey, god I can relate to the fatigue been conked out last few weeks, I think that’s a great idea go in there with a diary of a list of my symptoms, I don’t know what my neuro is waiting for really ? He looks at me like I’m over reacting sometimes, aghhhh.

@stumbler thanks stumbler think I really need to start pushing for answers like u say and speak up yes he may say no changes on the MRI but still have had a number of very different symptoms within the last 2 years it’s so frustrating, I need to be assertive with him when I see him in September X


stumbler
2 months ago

@melmel1 , not all progression can be seen on an MRI!

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