Will I make it?? Feel so alone

[Pman318]

I have just recently been told that I have 2 white matter lesions in my frontal lobe and they appear to resemble those of someone with MS. Although I have not been officially told I have MS I have been doing a lot of reading to understand what is MS and what I can except as I journey down this road to see what is really going on with me. I have read that a lot of times where your first lesions appear have a lot to do with what u can except the rest of your disease to do.  I'm pretty terrified that I might have PPMS because I am a 27year old male. I was just wondering can anyone shed some light on what's next for me does anyone know if having lesions on the frontal lone is worse than somewhere else or is this pretty common.. I feel very alone in all this right now since all my friends and family refuse to believe that I could ever have MS so they refuse to talk to me about it l. So I guess I'm just looking for someone to just be honest with me and actually talk to me truthfully.

[Pman318]

Thank y'all so much for the responses as of now I have not had any further testing done because of the weekend but will be going Monday to have it done. As far as symptoms I have been experiencing headaches and vertigo with some cramping in my right leg. And from what I was told the location of the lesions are by the ventricles they called them periventricular white matter lesions. I have become a bit obsessive about this but I'm really trying to relax because I'm realizing it might take months or even years to really understand what is or isn't wrong with me.

[HVAC]

I know you are scared. I sympathize. No test rules MS in or out. It is your history, symptoms, neurological exam, tests, and ruling any other possibility out. Lesions are simply spots on a MRI. The neurologist has to figure out what they are. Think of a MRI like shadow puppets on a wall. It does not show lesions. MS lesions are usually but not always near the ventricals.

Alex

[immisceo]

"Resembiling someone with MS" is not a diagnosis. Be very, very careful about how much you invest in the certainty of getting a diagnosis. This can be very detrimental to your mental health if it turns out to be something else or nothing. Also, and I do understand this is difficult, it does no one any good to try and 'pre-game' your longterm outcome even if you do have MS. It's just too individual a condition, and you'll only have made yourself miserable when you could have just been living life. It's not about 'preparing yourself', it's about 'catastrophising' - and that's never good.

People aren't initially diagnosed with PPMS. That is only determined by being observed over time. Jumping to "PPMS" without any diagnosis is not warranted and will not do you any favours. The notion of lesion location predicting outcome sounds like an academic study result to me. It would need a lot of follow up for it to be proven. I've never heard of this theory before. There are a LOT of theories concerning disease course out there, most of them still in the more theoretical realm. There's so much unknown about the brain and how and why things go amiss.

Have you had a comprehensive neurological exam? This is important in helping determine if the findings in the MRI are likely to be demyelinating in nature or not. Take a deep breath and try not to get to caught up in the hypotheticals right now.

[supermum_ms]

Hi and welcome,

You asked for honesty, and honestly 2 lesions in the frontal lobe with out any other lesion specific information eg demyelinating, T2, enhancing etc (or mentioning any neurologically suggestive symptoms or clinical signs) isn't on it's own actually suggest of MS to me, sorry.

I understand that you've been told that they resemble those of someone with MS, but the wording is very unusual if stated by your neurologist. It doesn't really mean that they absolutely are MS demyalinating lesions and can't be anything else, i would strongly suggest you keep open minded if that's all you've been told!

From my understanding, 2 lesions in the frontal lobe would not usually be classified as abnormal findings for a male or female of your age group. The frontal lobe can actually be a very common location for non specific lesions, minor childhood forehead impacts, sports related, car accidents etc can cause a ischemic lesion in the frontal lobe.

The frontal lobe lesions are also associated with mental health conditions, and from this comment......"all my friends and family refuse to believe that I could ever have MS so they refuse to talk to me about it"......it gives the impression that you have 'possibly' become obsessive in your belief you have MS.

IF you don't actually have the corroborating clinical, and other diagnostic test evidence, or neurological opinion that MS is a possible cause of what you experience, could your mental health situation be the reason behind your family and friends refusal to engage in any conversations you start about MS?  

Food for thought....JJ