Forum

Sarcoidosis - anyone heard of it?

Hi all- wonder if anyone had heard of neuro sarcoidosis and if anyone had heard of anyone that had it? It’s one of the things that my neuro mentioned at my appointment last week and I think it’s one of the things that they want the PET scan to rule out as well as the little c word. I’ve looked on google about it but would be interesting of anyone had heard of it and also if anyone knew if an LP would show it?

I heard about it from my neuro and he referred me to a specialist to check for it as I’d had a persistent cough for nearly a year plus the MS symptoms, which together apparently pointed towards sarcoidosis. In the end my X-rays etc. were clear and I was diagnosed with MS and mild asthma instead, but at least he was thorough! I don’t know anyone who has it, but I read up a bit and it can be very serious, but also can clear up by itself eventually. Sorry I can’t be more helpful!

When I was having all the tests to rule out things before fixing on MS, my neuro made me have a chest x-ray, in order to rule out sarcoid. I looked it up at the time. I know my mother-in-law had it when she was a relatively young woman and then went on to make a full recovery ( as I understand it, anyway). I know this i’s not all that helpful, but it i’s my experience of sarcoidosis. Teresa xx

Sorry my I-Pad keeps turning is into i’s. I don’t know why! Teresa xx

Any information is useful so thanks guys x

The only thing I know about sarcoidosis is that it’s mentioned all the time in ‘House’. It’s good for me, because I always get a smile out of it when I’m tested for something that featured in ‘House’ (Wilson’s was my favourite so far I think!) There’s got to be something to smile about after all!

Funnily enough thats where my dad had heard of it from! Good old house hey!

Sadly it hasn’t told me much more than recognising the name! I could tell you it was something to do with the lungs, and that one possible cause is catching it from birds/bird droppings (or something like that anyway!), and even that’s to be taken with a huge pinch of ‘tv show knowledge’ and a decent sized portion of ‘I think I might be remembering it correctly’!

Yes,

My friend has sarcoidosis. By a rather macabre coincidence, she was getting diagnosed about the same time I was getting diagnosed with MS, and had many of the same tests.

It’s quite a complex disease, and can take many different forms. The neuro variety is a comparatively rare complication (my friend didn’t have that), but it commonly affects lungs - and I think kidneys.

They will probably want to scan or X-ray your lungs.

Sarcoidosis has an extremely variable prognosis, with quite a high proportion of cases spontaneously resolving (which never happens with MS, that I know of).

A small proportion of cases (about 10%) have serious or even life-threatening complications, but the rest are somewhere in-between - don’t quite clear up, but don’t cause anything drastic.

Like MS, it is thought to be some kind of immune disorder, from what I can recall. I think there is also some connection with Vitamin D. But with sarcoid, it’s excess, not deficiency.

Tina

I’m having a PET scan done on Thursday and sarcoidosis is one of the things they are checking for. I’ve been given the diagnosis of rrms last week but he also thinks that I have another condition going on and mentioned the possibility of sarcoidosis as well as possible cancer. Just hadn’t heard much about sarcoidosis other than really bad cases

Hi Karina, My cousin has it, oddly my grandmother had ms and my father neurological problems, so we wondered if we hae a neuro rogue gene running through the generations. My cousin has been very ill but has recovered after stays in hospital. I think she uses an inhaler now because of lung damage, but otherwise she is queen of the festivals! Also she holds down a full time job and has 3 kids. Good luck with the dx process, Chis

I’m late to this post but as the others have said - sarcoid can affect different body parts, though it does have an affilitian to certain areas. Neurosarcoid is more unpredictable but generally 7-8/10 people do eventually recover. It’s an auto-immune disease so there’s no ‘cure’ as far as I know (unless it goes by itself) but you can be given immunotherapy to help.

I’ve seen a few patients with sarcoid and majority have come good in the end. It’s certainly better than the c word.

Let us know how you get on

Reemz

X

That’s good to know Reemz thank you. Will keep you all posted as to what happens after the PET scan

Hi

i have been in hospital for a week and just come out. I was admitted for breathing problems and palputations, anyway it so happens that they gave me an angiogram and looked at my lungs at the same time because they thought had blood clots but it turned out to be swellings of the lymph nodes. shortly afterwards I was visited by two doctors who told me that they wanted me to have another test which involved passing a camera into my lungs and at the same time taking a biopsy, they seemed to think that I had this condition you talk about and asked when I was diagnosed with MS and who my consultant was, anyway I then spoke to the consultant who was in control of my latest admission and he had a look through my medical records and told me that if I had been diagnosed with MS then I had MS.

laurie