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Update ... Befuddled with poss rare alt diagnosis similar to MS symptoms

Hi all

I wrote an update yesterday following my tour of 3 hospitals on Monday and then our bl00dy internet went down as I hit post so it disappeared and I didn’t have the energy then to start again

So here we go again…

Monday am Hospital 1- Liver and gallbladder scan following rocketing ALT blood test (over 400 versus norm of up to 45). Dr said my insides were ‘beautiful’. No fatty liver, lesions or tumour like structure changes. Nothing to show why it is still pumping out the wrong stuff. Consultant now investigating other things like Muscular Sarcoidosis (rather than liver or lung type) and Cushings (Cortisol producing pituitary tumour).

Monday lunchtime Hospital 2 - Diagnosed with optic neuritis by eye specialist following night in A&E on Saturday. Consultant now requesting brain MRI at last! Signed off work again. Pain has gone but left eye still has black blob and reduced vision.

Monday pm Hospital 3 - Consultant (Rheumy) now doing stuff mentioned above. C Spine and Tspine MRIs clear except degeneration and prolapsed disc. Says disc not pressing on spinal cord as I have ‘nice wide channels’ and it has moved out of the way - so wonky but not compressed and not the cause of the probs. Brain MRI booked now for Friday am. Says he will only refer me to a Neuro if I have lesions on brain MRI. If so then he still wants to see me himself as he dowsn’t want to close off any avenues of investigation yet given weird liver results. Has given me some sleeping tablets to try and partly replace the amitryptiline that he’s had to stop me taking re my ALT levels. He’s not convinced it was this as I was only on 20mg but doesn’t want to risk it. Now getting a weird drug induced sleep again but it doesn’t help with the pain or other symptoms.

Anyone know anything about Muscular Sarcoidosis (rather than other versions)? Rheumy says it can mimic MS re many many symptoms we are all experiencing and you can also get it in eyes causing ON. Says quite rare but not impossible - think zebras not horses. I’ve never heard of it before.

Please let this post successfully this time. Fingers and eyes crossed.

Cx

Hey Claire

don’t know much specifically on muscular sarcoid but have seen and heard of sarcoid which can affect many organs/tissues / bones and joints some areas more commonly than others. Your rheumy is right sarcoid can affect the optic nerve.

You sound like you’re in good hands and they’re being quiet thorough. Sarcoid like MS isn’t the easiest of things to diagnose.

Not much more I can add really but hope they get to the bottom of it for you.

Reemz

X

Not something I know about either, sorry. As Reemz says though - it’s great they’re being thorough.

I hope something rules it in or out soon!

Karen x

Hi Claire,

A friend of mine has sarcoidosis (sometimes called just sarcoid). I believe it can take many forms. I don’t know if “muscular” is a distinct subtype, or if it’s all basically the same illness, just luck of the draw which particular symptoms you get.

I know my friend gets very fatigued - so it’s similar to MS, in that respect. We’re like a right pair of old ladies!

On the whole, I believe the prognosis for sarcoid is rather better than for MS, as quite a high proportion of cases spontaneously resolve.

At the other end of the spectrum, a very small minority of cases do have severe and potentially life-threatening complications. But I suppose that is no worse than MS, which can also be life threatening - just usually isn’t.

Nasty though it undoubtedly is, I would say that overall, a sarcoid diagnosis probably has the better outlook. You might be lucky and it went away by itself. Unheard of with MS, to my knowledge (unless the person was misdiagnosed in the first place).

Tina

x

Hi Claire, I’m another one they’re checking for a rarer alternative diagnosis. I had sarcoidosis ruled out.

There is a form of neurosarcoidosis which can affect the brain, spinal cord and vision. The vision problems tend to be more of an optic neuropathy.

I hope they get to the bottom of things

Jacqui x

Oh crumbs - what a time you are having. I guess it’s a matter of hold onto the fact that you have ‘beautiful insides’ and a spinal cord with ‘nice wide channels’ and hope for more enlightening words from the medics soon. Hang on in there!

Alison

x

Oh crumbs - what a time you are having. I guess it’s a matter of hold onto the fact that you have ‘beautiful insides’ and a spinal cord with ‘nice wide channels’ and hope for more enlightening words from the medics soon. Hang on in there!

Alison

x

Thanks all as ever for your support (and humour).

Internet keeps going down (Damn BT!) so Dr Google has taken a break today.

Trying to be a patient patient. Not very good at it.

Cx