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Sarcoidosis

We’ll just had letter from neuro saying spinal tests fluids show evidence of some inflammation , but says his college has mentioned from my ENT appointment swelling of my parotid glands. He says this may be linked to the inflammation in my nervous system and there is a condition called sarcoidosis, and has arranged a scan of my chest & abdomen . He will then arrange an appointment with me to discuss results. So guess I’m still in limbo Anybody help Thanks Gray x

Hi Gray

My dad has sarcoidosis, he is 66 and now has arthritis all over his body. It has also affected his eyes, lungs and kidneys.

However his consultants have told him that if he was a younger man and if it had been caught sooner then he would very likely have made a very good recovery from it and it would not have affected him so severely. They say there are cases where younger people have received treatment and are doing very well.

For him, the treatment appears to be steroids for life and treating each affected part of his body eg steroid drops for his eyes, keeping careful watch on his kidneys etc. He cannot have anti inflammatories for the arthritis as these are all processed through the kidneys and would damage them further so they have to find different drugs and it’s a case of trial and error to see what he can tolerate and what dosage will suit him. He also cannot have painkillers so has had to learn to live with it :frowning:

Have they found any calcium in your blood tests as this was one of the first clues for his consultants? Frustratingly, at his local surgery, they had noticed his BP rising and were giving him tablets to bring it down but missed the calcium showing up in his blood tests and did nothing about his persistent cough. If they had referred him to the hospital sooner, it might have been a different story for him.

I hope you get some answers soon and the necessary treatment for whatever ails you

Tracey x

I can’t help with telling you which it is, but yes, sarcoidosis is one of the differential diagnoses of MS. It is a highly variable disease, but may affect the CNS. Often affects lungs (and I think kidneys too?)

A friend of mine was diagnosed with sarcoidosis about the time I was Dx’ed with MS, and underwent many of the same tests.

Like MS, it has a very variable prognosis. As with MS, life-threatening complications ARE possible. However, unlike MS, a fairly high proportion of cases spontaneously resolve. Most cases are somewhere in-between - i.e. symptoms and/or flare-ups can persist for years, but without anything catastrophic happening.

My friend, like me, suffers from fatigue, but otherwise has so far been pretty OK with it.

I don’t agree with her approach to it, though. She’s been paying a fortune to see some quack, who basically says it’s all a product of her own negative attitudes. As with MS, there’s no evidence at all that sarcoidosis is psychologically induced, or that attitudes or personality are risk factors. I get really cross that my friend is being told it’s her own faulty thinking that caused it (Surely this would only cause more negative thinking - of guilt?) However, she’s not at all a silly girl, so there’s nothing I can do if she chooses to believe this. I just think the burden of ill health is enough, without being led to believe you caused it somehow.

Of course, there are illnesses where lifestyle choices play a part (though this doesn’t mean they’re always caused that way). But MS and sarcoidosis are not among them - that anybody’s been able to establish Neither is caused by “wrong thinking”.

Tina

Thank you ladies Not sure how I feel about it really Thought I was going to get some kind of closure with this letter Got appointment with GP tomorrow to explain a bit more. But still in limbo land Gray xx

Well had GP appointment and in his correspondence from neuro the inflammation in my spinal fluid is not linked to ms and as I was under investigation with ENT specialist as my parotid glands were swollen before my flare and still are, they want to look down this route. So back on the test treadmill Gray x

Crikey!

On the plus side, you did react fairly well to steroids didnt you? So theoretically you might get an even better recovery than you have so far???

Sorry, I’m just curious as we seemed to have been going thru the motions with tests etc. at roughly similar times… but I don’t think I’m going to wiggle out of PPMS now no matter how hard I try to wish it otherwise! :wink:

I can imagine how frustrated you must be though so I really hope an actual final diagnosis really soon, the waiting has taken so long :frowning:

Fingers crossed as always

Sonia x

Yea Sonia can’t complain really I have returned to about 95% of my old self And as Tina has pointed out if it does turn out to be sarcoidosis and they catch it early my outlook might be good. Just gonna try and get on with things and when a DX comes it comes spent the last 6 mths being able to think of little else Take care Gray xxx

Hi Gray, I am still in limbo and always interested in DXs other than MS as it might be something they have not considered for me.

Can I ask if you have spasticity, leg weakness, hyper reflexes, positive babinski sign or anything like that. I had a spinal cord lesion which has gone on last MRI but am still left with all those problems. Nothing on brain MRI, and both my LPs were “unremarkable” apparently.

Thankyou

Moyna xxxx

Hi Moyna Yes I did have those problems with my legs early on but they have all but disappeared just get a burning pain in my right leg especially when I lye. Down, I too only have one lesion on my spine , there not sure it is sarcoidosis but they Want to rule it out, so far in all my correspondences from neuros it’s the only condition they’ve put in writing. Gray x

Thankyou Gray,

Hope you get concrete answers soon.

Moyna xxx