Lesions without demyelination
Hi guys.
I’ve had a difficult time (like many others) getting a diagnosis or even assistance for my symptoms.
I have had the usual indicative symptoms which have progressively gotten more severe (nerve pain and loss of sensation, loss of bladder control, bowel control issues, tingling, tremors, brain fog, legs give out, optical neuritis, seizure … on and on)
But the other day my husband found me in bed at 10am and I was unable to move much and could not talk. I have since been in hospital.
At first they tried to send me home an hour in, then they apologised and kept me after seeing an MRI indicating cerebral lesions.
The next day another doctor tried to get rid of me, saying I was manifesting my symptoms because of emotional upset….
I don’t have time to ‘manifest anything’ and I let her know that. So she ordered a new MRI and sure enough, more lesions, now on both sides of the brain.
Problem is for her, there is no demyelination on this lesions so she is refusing to treat me for MS despite other doctors opinions on the matter.
Can I have MS if my lesions do not indicate demyelination?
Has anyone received their diagnosis with this type of lesion?
Thanks guys
- Marti
, First off, I am so sorry you are getting dismissed by medical professionals! And I am sure that incident the other day that necessitated a hospital stay was scary for you and your husband.
I know it's probably exhausting on top of dealing with your health conditions, but please keep advocating for yourself and your health! You are doing the right thing by staying persistent.
Whether you are dealing with typical MS or another condition, something is obviously going wrong in your body and it NEEDS to be addressed! There are some conditions that mimic MS that your physician should rule out but, some of these conditions include demyelinating lesions -- https://www.nationalmssociety.org/Symptoms-Diagnosis/Other-Conditions-to-Rule-Out. I have to be honest; I have not heard of non demyelinating lesions in this community before. I hope someone with more knowledge on this sees your post and can offer some helpful insight. My understanding has always been that lesions are lesions -- period. But, please know that I am not a medical expert.
I think you have every right to seek a second (or third!) opinion from a specialist -- and perhaps continue to disregard what that one physician said about "emotional upset". Talk about an unhelpful comment!
A neurologist may be able to help diagnose your condition, whether it's MS or not. And please know you are welcome to be a part of this community, regardless of a future diagnosis.
Please don't quit pushing for answer, even though I know it can be draining and hard. And please come back and continue to update us on how things are going, if you feel comfortable doing so.
Best, Erin, MultipleSclerosis.net Team Member.Thankyou so much for your input and support.
, I'm so sorry that you've had this experience. Being in the hospital is frightening enough without having medical professionals question your need to be there. I echo what Erin has said in that something is going on whether it's MS or not. Perhaps consultation with a neurologist who specializes in MS would be a next step. By the way, only very recent research has suggested that there may be a sub-type of MS that does not have demyelinating lesions (see https://consultqd.clevelandclinic.org/newly-discovered-multiple-sclerosis-subtype-lacks-brain-white-matter-demyelination/). I wasn't aware of this until searching for an answer to your question.
I hope that you find answers soon and continue to advocate for yourself.
Best wishes, Lisa (moderator)
Hmmmmm interesting stuff!
I want the right diagnosis whether that be MS or otherwise but not if they are trying to pass it off as a psychological cause. Even while I’m here I’m chirpy and I’m always doing everything without complaints so it was definitely a kick in the teeth.
Fingers crossed I can get some answers, meanwhile they have done many many tests here which would have otherwise taken me years due to waiting lists so I’m grateful just for that
Feel for you. It's horrible being dismissed and treated as though you are crazy. I haven't had any answers for my symptoms and have previously been told it most likely anxiety. I have to remind myself sometimes that what I feel and what I felt last year (which was much worse) has been real. What you have been through is much worse than what I have experienced and you have had lesions! Keep advocating for yourself.
it’s really rough! Nobody wants to subscribe to a lifelong disease that only limits what you do and comes with no benefits.
At the same time, having been in hospital so often I have been sharing rooms with some colourful characters at times whom are really just in here to put on a show and waste time and resources because they don’t have someone caring for them at home and want the attention here.
So I get it.
But dismissing everyone just isn’t right. I don’t know who would want to take the harsh meds that come with these types of conditions… I can’t imagine anyone would pretend long enough to go through with treatment?
I'd assume some of these people have mental illness behind their behaviour. Sad that people feel they have to fake illness either to connect with people or perhaps for a roof over their head. Though, it's not helpful when health professionals cannot see the difference. It makes me question myself. Like, am I just manifesting this somehow due to a childhood wound?? Is it anxiety??
Annoyingly apart of me wants to prove them wrong but at the same time don't want to be unwell. It would be nice to be taken seriously. I did have an approach of just getting on with things and not thinking about any of it but then I was noticing symptoms more again. Hard to ignore the electric shock in my tongue. The other thing is that it could be epilepsy related. At the end of the day the doctors should be taking it seriously.
