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Thread: MRI for MS/MND worries

  1. #1

    MRI for MS/MND worries

    Hi all I'm new here and currently going out of my mind after my mri results. I've had all the usual neuro issues muscle spasms, tingling, weakness, brain fog etc. Also have a family history of mnd and ms. The neurologist ordered mri and emg very quickly but said my initial neuro examination was ok.

    I had mri scan last week and received a letter today saying mri shows a non specific area of increased t2 signal in the right frontal periventricilar white matter, nothing else of note. Brain and spine scan. I see the neurologist tomorrow but I'm going out of my mind with worry.

    I understand no one can give me the full medical breakdown of this, but I just wondered if anyone had this come up on their scan and what it resulted in?

    I have health anxiety stemming from having cancer 8 years ago but this is another level.

    Thanks if you got this far.

  2. #2
    Join Date
    Oct 2016
    Posts
    19

    Re: MRI for MS/MND worries

    Hello. I had the same findings on my MRI and from my interactions with numerous neurologists it really isn't all that "special" or rare of a finding. Most of the neurologists I've seen didn't even speak to my MRI showing white matter. Having a clean neuro examination is excellent news and should give some relief while you are waiting for your next appointments.

    If you are worried about MS, my understanding is that MS has a pretty distinct pattern that shows on an MRI. I wouldn't put a ton of weight or concern on this white matter finding.

    My MRI finding is actually what set me off into my 4 plus year battle with health anxiety that continues to this day. No disease state has ever been found with me by specialists so I've abandoned that medical route and am focusing more holistic and psychological approaches to calm my nerves. Best thing you can do right now is try and calm down.

    Good luck on your appointment tomorrow and keep us posted.

  3. #3

    Re: MRI for MS/MND worries

    Thanks so much for replying, I thought no one would! Seen the neurologist and he has ordered a second mri with contrast dye to get a better image of it. He can't be sure what it is, even though he 'thinks' its probably nothing.

    I'm freaking out of course, having had cancer 8 years ago the neuro is probably being more cautious but he said he can't say 100% its not a tumour. Also said it could be an inflammation in the brain meaning potentially lupus or a range of other conditions. I'm now paranoid about lupus as I have a lot of the symptoms. So i need a blood test for that and maybe a lumbar puncture following mri with contrast.

    I'm just so sick of all of this! I'm only early 30s with 3 very young children and I'm going out of my mind they will be left without me.

    So sorry you've been through years of HA after your mri it truly is hell. What have you found helpful to calm down?

  4. #4
    Join Date
    Nov 2009
    Posts
    5,858

    Re: MRI for MS/MND worries

    Oh Darkstar, what a truly hideous situation for you, I really feel for you ! ALS/MND clear but still they want to be certain, absolutely certain with your past history. Given your past history they will of course be ultra cautious, I know myself how that once goes from my own prior cancer, but that also means that your mind is going to be jittering with all the 'what ifs' and 'could it be' scenarios. I honestly don't view what you are experiencing as just HA, it is HA with real life triggers and with valid concerns...not just an out of the blue 'worrying about nothing' mental health problem. I would say to you that you need to jump back into cancer psychological position - I'm not saying that you have cancer OF COURSE - but you know yourself that during treatment and recovery you need to employ very specific mind-sets that save your sanity and retain some normalcy. You know yourself, being 8 years clear, that effective treatment is entirely possible for most things - lupus being one of them that no longer has a major impact on life-expectancy. You know that whatever the outcome (and hopefully nothing at all of any concern!) there will be a strong support network and the medics will deal with whatever the outcome is. I am so so sorry you are having to face all of this uncertainty and range of testing after overcoming cancer 8 years ago, life just isn't fair and you have such young children - life might not be fair, but you have the strength of someone who has come through cancer and that can stand you in good stead. I know some of the thoughts that must be in your head, and how even the thought of having to go through something (medical) again thats so hard must be unbearable, but hold on in there - things can change as you will know as things become clearer.

    I'm sorry, I don't know that I'm helping much, I just wanted to reach out to you. x
    Last edited by Carys; 17-01-20 at 12:57.

  5. #5

    Re: MRI for MS/MND worries

    Thanks carys. Sorry to hear you had cancer too. You're right about real life triggers for the HA. When you've been through something so traumatic its hard to not catastrophise.

    The anxiety has just gotten worse over the years. After my first diagnosis in my 20s and went through treatment then had some time free of anxiety. After each of my children it's gotten worse.

    But these are real symptoms and I feel dreadful with fatigue every day so I'm sure theres something up. I've got an EMG test on Tuesday which will hopefully quash the mnd worry. But the neurologist cant say it's not MS yet. I can't stand all the waiting for appointments I just wish I could know now what I'm dealing with. I'm barely existing at the moment and kot able to do fun stuff with the kids.

    I hope you're doing ok health wise and not in this anxiety hell carys x

  6. #6
    Join Date
    Nov 2009
    Posts
    5,858

    Re: MRI for MS/MND worries

    I can't stand all the waiting for appointments I just wish I could know now what I'm dealing with. I'm barely existing at the moment and kot able to do fun stuff with the kids.
    I know It must absolute sheer hell for you. I can't even imagine to be honest and just wish there was something I could say that was really meaningful to make it better. Its always the waiting isn't it - the psychological toll is immense, it puts you in a different place and the 'barely existing' is something I truly recognise. You know from your prior experience that once you know, you can take back some of the control personally, and once you start treatment for something then life gradually inch by inch becomes more bearable. All you can do is get through this as best you can, there really is no easy way and no magic solution - you will know this. When I had my diagnosis people all around me thought they were being helpful by saying 'itll be nothing' 'don't worry, it won't be x' but that actually didn't help me long-term, as I became even more fearful and desperate that I wouldn't cope if it was anything 'bad'. An intelligent person said to me 'it might be x you know, but it will be dealt with'. Now, I know this is hard as you don't even know what X is at the moment, or even if there is an X at all, but hang onto the fact that whatever the outcome these medics have your back, just as they did in the past !

    Is it mostly fatigue that is the issue or do you have other symptoms ?

    Thanks for asking about me. I'm doing great, 3 1/2 years clear at present, and no I'm fine with anxiety in the main apart from perimenopause anxiety from hormone changes. I am older than you though, with no children at home, and I think that does make a difference in how things feel when you face these issues.
    Last edited by Carys; 17-01-20 at 14:19.

  7. #7
    Join Date
    Oct 2016
    Posts
    19

    Re: MRI for MS/MND worries

    If it makes you feel better, I had a second MRI with contrast and that didn't show anything either. I was given the option of a spinal tap but at that point I was pretty worn out by all the testing and doctor's appointments I had at that time so I decided to not do the spinal tap. I had rounds and rounds of blood tests with the only finding being low Vitamin D (fairly common).

    Take some solace in the fact that it sounds like your doctor is being thorough and it sounds like you are able to get these tests fairly quick. Obviously, medical professionals are best to examine you but hopefully you can take some comfort in knowing there is someone else out there (probably a lot more of us) who had similar MRI findings and it turned out to not be cancer, ms, etc.

    For me, I'm still trying to work on managing my symptoms which at this point seem to stem from insane amounts of stress and anxiety over the years chasing a diagnosis. I get regular massages, exercise, and see a counselor. I'm not going to lie and say I don't have times/days of being scared but I'm taking it one day at a time.

  8. #8

    Re: MRI for MS/MND worries

    Sounds like a very similar experience to me thanks for sharing you've made me feel a bit better knowing it turned out to be nothing serious.

    I'll probably take the spinal if its offered even though I think I'm at the absolute limit of dealing with all these appointments.

    Glad you're managing to take a bit of control over how you're feeling. I've been getting what feels like a muscle spasm inside my head today so I'm convinced my brain is swelling! It never ends.

  9. #9

    Re: MRI for MS/MND worries

    Is it mostly fatigue that is the issue or do you have other symptoms ?

    No I've got a long list of neuro issues! But fatigue is the most difficult with 3 young kids to look after.

    Thanks for asking about me. I'm doing great, 3 1/2 years clear at present, and no I'm fine with anxiety in the main apart from perimenopause anxiety from hormone changes. I am older than you though, with no children at home, and I think that does make a difference in how things feel when you face these issues.[/QUOTE]

    Glad to hear you're doing well. I hear ya about the hormones, mine have been all over the place since I had my third...yet another problem of mine!

  10. #10

    Re: MRI for MS/MND worries

    Today is EMG day. Another test another appointment. Not looking forward to the needle aspect but I've heard it's not painful. I've to get both arms and legs and maybe back tested.

    Been a horrible few days ended up in a and e dye to chest pains and palpitations. Of course it ended up it was a major panic attack. Starting anxiety meds after this test tonight. Hoping they kick in quick.

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