Hair loss

Hi everyone, Was wondering if any of you had experienced hair loss? Mines been happening for a few months - before I was even had steroids for the first time. Wondering if any of you experienced this?

Hi Karina,

The only time I have suffered hair loss was when I was dx with having SLE, Lupus. Haven’t heard of it being associated with MS. I Have been on and off steroids for years and never lost any hair due to them. Hope this helps.



Hi Karina, I doubt very much if it’s connected to MS. Have you seen your GP? If not, I think you should. It might be caused by something else and quite possibly good treatments for it.

It’s very distressing to have hair loss. See your GP and see if you can get it sorted.

Hope you can get some help for it very soon,

Pat x

I’ve seen the gp who didn’t take it seriously but also saw my neurologist last week and mentioned it to him and he sent me for a whole load of blood tests which I’m awaiting the result of. Just wondered if anyone had experienced it as it seems strange. The neurologist is testing me for antibodies and lupus and vitamin b12 etc to rule any of those out

Hi again Karina,

Take a look at this:

Interesting that it can be caused by problem with immune system. I’ve never heard of it as a problem with MS but reading the info does make it seem possible as it can be an autoimmune thing which MS is also.

Great that the neuro has done blood tests as a lot of conditions mentioned in the link can be detected in blood.

Also it mentions stress. Do you think that could be a factor?

Glad that the neuro has taken it seriously and I hope whatever’s causing it can be treated.

Pat x

The weird thing is I’m not stressed at all - I’m the calmest I’ve been in years which is a weird thing! I’ve also now got a bacterial infection round my mouth on my lips which the doctors given me antibiotics for today and they think it might be impetigo but they aren’t sure! I feel like I’m falling apart! Lol!

Hi Karina,

I’m also experiencing hair loss and have been for a while now. I had my hair cut about 6 weeks ago and she said that although (at the time) there were no bald patches as such, it was definitely a lot thinner just above the nape area (the main area where I’ve been losing it). That said, overall my hair is a lot thinner than it was and I shed a lot!!

As Pat and Janet have said I don’t think it’s directly linked to ms - I’ve not been well for over a year now and have switched meds and dmd’s in that time too. For me personally I’m more inclined to think it could either be stress or perhaps a side effect of one of the meds that I’m on. I’ve noticed that it’s a lot worse since upping the dose to the max on one of them!

I’m due to see my neuro in August so I shall definitely mention it to him then, see what he says.

Like you, I don’t feel stressed and am quite laid back but many moons agao I was also a hairdresser and know that there are endless reasons why it could be happening.

Would you mind letting me know how you get on and I shall do the same?

Good luck!

Debbie xx

Hi Debbie, yeah I will let you know what happens. Mine started before any medication so that’s why I’m so curious to find out the cause and that’s why the neuro was concerned and running blood tests and other tests to find out whats going on. I haven’t been diagnosed with Ms yet although it’s likely but the neuro wants to rule other things out and he said that ms doesn’t cause hair loss typically. There must be something else going on to have a bacterial infection on my lips too!

Hi Karina,

Oh it’s not good is it

I had / have (cos it still flares up sometimes) a skin problem on my belly of all places. I went back & forth from neuro to GP and then to a dermatologist (who was more than useless). In the end my GP prescribed yet another cream and bingo!! We think he’s nailed it down to psoriasis that becomes infected.

In your case though maybe it is all to do with everything else going on? Either way thank goodness your neuro sounds like he’s on the ball.

Keeping everything crossed for you!

Debbie xx

Hi Karen’s-about 20 years ago pre diagnosis I suffered hair loss so much so I looked like a monk and took to wearing a beret!!! For me I think it was stress. Ended up getting steroid injections in my head and it grew back!!! Hope you get sorted soon Hugs Minxx

The last time I suffered hair loss it turned out I was anaemic but if you have had blood tests that will be picked up

Hope its sorted soon.


Hi Karen,

I lost nearly all my hair in 2010. I have never been given an explanation as to why this happened. I had quite long blond hair and the hair loss was all over ie severe thinning rather than bald patches. I was left with wispy pieces and looked like I had been through chemotherapy. I had it cut short. It happened after a severe infection so I dont know if it was to do with the drugs I was given. It has grown back curly (previously very straight!!) and black. Its funny but I found it very upsetting even though I had come through a very severe infection loosing my hair felt terrible. I did take Norvikrin (think thats what it was called) which I got on recommendation from a friend and I felt it worked.Its good your Dr is doing blood tests to rule out other causes. Take care.

Hi Karina,

Do please let us know what the results of all your tests show. Fingers crossed it’s something that can be sorted out quickly.



I’m still waiting for the results of the blood tests - I think its going to be another week or two until I get the results :frowning: the hair loss is starting to get to me now as its every day loads coming out - makes me worried to wash my hair or even brush it!

Anyone else having trouble writing a new thread?