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The Thalamus in MS

I’m curious about the state of my brain and eager to show my latest MRI images (done for a research project) to a neurologist in the hope of shedding some light on what is happening in my body to cause these various symptomatic experiences.

Whilst trying to educate myself a bit (not so easy anymore, with faulty memory, shortened concentration, fatigue and eyeballs that ocassionally judder from side to side, lising my place), I found this:

I’m half tempted to just out and ask my neuro ‘So, how’s my thalamus then?’! Seriously, though, I am concerned about brain atrophy. I know it happens with age but surely, not so suddenly between the ages of 38-40? I can see that my eyes have sunk, which you might expect if I was skinny but sad to say I’m a bit overweight (Only by one dress size but I’m not comfortable with that).

I am hopeful that this next encounter with a neurologist might shed more light. I am sure in my gut that there is something physical going on. At this point, I’m feeling determined and scared. I accept that I have CFS, I even accept that I may well have FND as they tell me I do…but I need a neurologist who will listen to me and be thorough in examining all the evidence that I have tried to give them. I feel like I’ve been fobbed off by being told I’m ‘hypervigilant’ and offered Duloxetine I suspect as an anti-anxiety drug. I’m slipping into a rant here, sorry, but I’m so fed up of limboland. That and the last neuro’s insincere cheshire-cat grin is haunting me…

The FND group are wonderful but there are still experiences I read on here which more closely echo my own. I could use a hug now.

I agree with the above poster Reikiblossom. I understand your doubts and confusion and I do think you need to get the structural changes explained to you, but at the moment none of your tests have evidenced MS and that’s great news.

Do you have a FND nurse you can talk to about your symptoms?

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I agree with the above too Reikki. But I am like you in Limbo and have known there has been something wrong since 2011.

Unlike you I do have a lesion on my spinal cord but not enough to have a diagnosis. I insisted I had a LP and that was clear of O bands.

By the first neuro I saw I was given the diagnosis of radiation myeleopathy from cancer treatment I had in 1990. The next neuro I saw completely dismissed that diagnosis and thought MS but as I don’t satisfy the criteria I don’t get a dx.

I am lucky in that my only problem is a spastic foot drop which has developed very slowly since 2009.

I keep coming on this site as I am searching for answers. I get good tips that I find useful. For example if it wasnt for this site I wouldnt know about FES. I am hoping to get this soon.

I have been on a site for people who had radiation treatment for hodgkins and no one has this myelopathy that I have. The common complaints are breast cancers and heart issues. I have more in common on this site.

I agree with you in pursuing a diagnosis and my opinion would be to insist on a LP.

Moyna xxx

Anon. I hear you. I tell myself the same thing but need to reach out now and again. Just to be clear, I’ve had one diagnostic MRI that came back - not clear but ‘within normal limits’ - and one that was done during participation in a research project but the radiologist could only tell me that there were ‘a couple of structural things’ and that I could get my GP to follow it up.

humbug - there is no such thing as an FND nurse. It is less accepted even than ME and we don’t, as yet, have an official charity for it.

Moyna, thankyou for your reply. I will ask about an LP.

Hi, Reiki,

My heart goes out to you I wish i could offer you good advice, all i can say is hang on in there, i’m in a similar place to you, left without answers but with a significant disability (wheelchair user) 3 years ago I was a busy mum running around after my children climbing hills and busy with my life… now can’t walk down my path without legs buckling I’m doing all i can to stop myself going into a depression while getting my energies together to ask for a second opinion …I’m not going to rush this i need to be in a good place to take up the fight again and certainly don’t want this to be blamed on stress as it has been before…Don’t give up, we know something isn’t right with our bodies and just because we don’t tick all the boxes doesn’t mean we are fine and arn’t allowed to grieve our loss of mobility and our life changing disabilities and like you said FND nurses don’t exist… all I want is emotional closure and to be able to accept this and move on with my life i have to say cognitive behaviour therapy has helped …its not made me walk again…can’t throw the wheelchair away… but its helped me to come to terms with the changes and to accept my new situation and most of all given me confidence to feel happy and proud of who I am and i have to say i see my power wheelchair as my friend it means that I can still have adventures with my children.

Love Michelle x