Confusing Information

Hi everyone, there seems to be a difference between what experts say and what people who actally have M.S. have as symptoms. My daughter has suffered with a headache since April/May, it is a tension type headache (she had it before diagnosis), she has itching under her skin which is driving her mad and her skin is so sensitive to touch now. On checking with neurologist, M.S. nurse and boards I have found that the experts (M.S. nurse and neurologist) don’t think that these have anything to do with M.S. but according to the boards a lot of people with M.S. have headaches and unexplained itching. With so many people suffering surely the experts need to change their thinking and start listening to the real experts on M.S. and admiting there are some things they don’t know why you get certain symptoms but admit they do belong to the family of M.S. Linda x

Hi Linda,

Even if these ‘experts’ don’t think the issue is anything to do with MS, surely they should refer the matter on to someone else to investigate?

Does it not cross their minds that there may be things they have no personal experience of …yet, but others may have come across time and time again?

Good luck with however you proceed!!


When you say she is itching under her skin is there any rash? Also is she on any nerve pain medication as this could be nerve pain which can sometimes feel like itching under the skin?

hi linda

i have heard it called hypersensitivity by my neuro (who isnt ms specialist)

@pat - love that concrete pig!

carole x

Pat I’ve just seen the same pig!! :slight_smile:

Hi, no rash, she says it feels like ants under her skin and her skin feels sore to touch either by hand or clothes. Not on any meds other than rebif and paracetamol. Loving the picture of concrete pig in ribbons flying overhead. She had the neuro at the relapse clinic on Monday so hoping they can give her something for the itching as she is numb and is scratching till she bleeds as she can’t feel it. Thanks for replies. Linda x

It sounds like nerve pain - there are drugs that the neuro can prescribe for it so hopefully it will ease off

Thanks Karina1980, will speak to neuro on Monday about this. Linda x

Keep us posted x

Ask GP to prescribe a course of gabapentin and see if that cuts it down its a neurological pain killer.

I have that crawling feeling like you describe I explained it to my ms nurse and gp. I was prescribed gabapentin and it does help, it was stopping me sleeping as I wanted to rip my feet off. I forgot to take it the other night after falling asleep and was woken several times with the horrible feeling. I was also told by a neuro that headaches aren’t ms related the same neuro that questioned my diagnosis but he didn’t have all the facts. I wasn’t complaining about a headache but acute pain in my lower head which I have since been advised where one of my lesions is. I experience this pain when having a significant relapse. Glad this guy isn’t my neuro I only saw him when admitted to hospital via a&e wwith my last relapse and my usual neuro was on holiday. Not good planning on my part.

Thanks everyone, will ask about the Gabapentin on Monday. She is finding sleeping really hard at the moment as like you barneyowl it’s her feet that are the worst and keeping her from sleeping. She’s rubbing them on the carpet, slapping them, scratching them, rubbing cream in and nothing seems to help so hopefully if she gets prescribed Gabapentin it will give her some relief. Will let you know how we go. Thanks again. Linda x

Hi My little boy has MS,his first symptoms were severe headaches,he still gets headaches often,they are a big part of his MS.His neuro who is at Edinburghs Sick Kids has never questioned that the headaches are not MS related,he and all the nurses in the neuro ward know that headaches are one of Sams main MS symptoms,i wish neuros and ms nurses would all get on the same page,as it is very confusing but you know your child better than anyone,even the so called experts,so if your gut is saying her headaches and itchy skin are MS related then they will be…mums know best.

love Sandra x

Hi Sandra, you are right, we do know best. We might not know why or how but we do get a gut feeling when things are wrong or when things are connected. As much as I know my body best I know my child’s even better. Not for a minute would I suggest that I know better than doctors, neuros or the nurses as they are very highly educated and some are experts in their field and I am not but the one thing I am educated in and an expert of is my child. I also understand that I a gibbering wreck at the moment and prone to panic if she sneezes or coughs but there are some things that just make sense, her itching and headaches are M.S. related. Roll on Monday. Good luck with your wee boy. I hate the fact we are members of a club we never applied to join. Linda x

Hi Linda,im exactly the same,since Sam was dx in 2009,every sneeze,cough,headache or being sick then my stomach turns and i feel myself go into panic mode,i used to call his neuro and cry down the phone to him as i was so scared a relapse was starting but ive now learnt to wait,i still feel sick and want to burst into tears incase it is a relapse but ive learned that he will get bugs/viruses just like other kids,its a horrible feeling to wait and see but what else can we do.Let us know how you both get on and i know only too well your fear,thinking of you

love Sandra X

Hi everyone, neuro thinks she might have been having a sensory relapse but as she is feeling better wants to leave it and see how she gets on but if it starts again to phone and they will give her steroids again, he is not too keen to give her too many sessions of steroids. If she has another one he thinks maybe another M.R.I. scan to see if the rebif is doing it’s job. He also gave her a prescription for something for the itching, can’t remember the name. So all is good I guess. Feel less panicky now she is feeling better than she was. Thanks again guys for support. Linda x

Glad she is doing better. In relation to steroids there’s a limit as to how many times you can take them within a 12 month period- cant remember the figure but my ms nurse mentioned it the other day. That’s probably why they were reluctant to prescribe them.