Not to reiterate old ground too much, but as Min and others have already said, I don’t think relying on the neurologist to diagnose and treat weight loss is the way forward. (i) It might have nothing at all to do with the MS, and (ii) it’s not really their field, even if it’s (indirectly) related to the MS. They’re not nutritionists! It needs to be raised as an issue in its own right, and not something the neuro holds all the answers to. My own experience is that neuros show little interest in symptoms that are not classically associated with MS. They regard them as somebody else’s problem (SEP). And indeed, that could be the case here.
I know the neuro appointment is getting quite close now, but it concerns me that Hubby still hasn’t seen anyone about the weight loss itself, on the assumption the neuro appointment will sort it all out. I’m not overly confident it will, as weight loss isn’t really their thing.
I think it needs a GP appointment about this specific topic, with no preconception that it’s part of MS.
Hi tina and min read your posts husband seen neurologist other day the neurologist did mention the weightloss and seemed concerned he also mentioned symptoms and said he had some that ring alarm bells.He said the mri looked like ms but symptoms were strange and he said he was worried and wanted to test him for devics syndrome.As he has lost central vision in both eyes struggles with color and is incontinent just a few of his many symptoms.Maybe weightloss is a symptom of devics syndrome not checked this out yet.Other neurologist seemed sure he had ms now we dont know what to think.Got to wait at 3 months to see neurologist as he wanted to see him in 1 month but has requested alot of bloodtests and lumber puncture and mri of spine and said blood work will have to go all round the country so wouldnt be back untill 2 months.Reception said couldnt do 2 months have to be 3 even more waitng then.xxx julie
I’m glad you have finally seen neuro. I’m afraid I don’t know much about Devic’s, and whether it’s more likely to cause weight loss.
I do know it tends mainly to affect the optic nerve and spinal cord, and spare the brain - in contrast to MS, which would almost always show some brain lesions eventually.
Even if it’s only managing the symptom, while you wait to get to the root of what’s wrong, I wonder if it’s worth pressing for a referral to a nutritionist? Someone who might be able to help get Hubby’s weight up?
Hi pollx and tina i think his weight has stablized now he just cannot seem to put any back on he is that thin his hip bones stick out and his ribs showing.He is still having stomach pains neurologist mentioned about weightloss hope in someways these new tests give answers. xxx julie
Hey Julie - sorry to be a nag - it’s the dietitian in me. Reading through lots of mention about weight loss but no action I have read. Great you say it’s stabilised. But please ask GP for the supplement drinks I mentioned in my previous post to try to put weight on. Ok - again sorry to be a nag and good luck Min xx
Hi, as everyone else has said please don’t rely on the neurologist for explaining the weight loss. If your husband is having constant stomach pain and weight loss this needs investigating by a gastroenterologist.
I had to see a dietician as my weight dropped too much and I now take prescription complan which has added vitamins and minerals. Stomach pain and weight loss are not usual symptoms in Devics.
Julie - you are such a lovely lovely kind person. I am going through a particularly tough time. Your kind words have really cheered me up and put a spring in my step. Big thanks Min xx