Neuro Sarc

Hi Peter. Where are you living?

I ask as treatment for Sarcoidosis or worse Neurosarcoid can be a lottery for choice of medical professionals that specialise in these conditions. I have biopsy confirmed Sarcoidosis in my lungs, and possible Neurosarcoid in my brain

Even when Sarcoidosis consultants are available, the standard of care varies drastically. Your doc's need their heads knocking together by the sound of it.

I have had two collapses in 4.5 years, the worst being the last one. Following the on the floor and having the room spinning & being very ill into a plant pot, my balance is very impaired and now l only get occasional double vision.

This has also led to a full time 24/7 headache, which may be a form of migrane.... and unrelated to Neuroarcoid.....And if in pitch black dark....l don't have any situational awareness of my surroundings.....up could be down for all l know. I also have developed Periphial Neuropathy in my hands and feet where l struggle to feel my feet.

But now l think l finally in front of three good doctors who COMMUNICATE! I have never had stroke symptoms.

I have initially been tested in Switzerland by CAT And MRI scans and have had two lumber punctures that twice detected a raised level of protein in my spinal fluid.

Since then l have had numerous blood tests, brain scans etc and they still have not confirmed what it is. I am hopeful l will soon know the diagnosis. But you must keep asking your medics for answers...or choose other ones!

Wishing you the best of luck.

Kind regards

David

Hi Peter, I'm a 68 year old have had sarcoidosis for 20 years now. I have many symptoms on a daily basis but have had 3 episodes over the years such as you describe. The worst one was a year ago and the docs thought it was a stroke. Had a clear cat scan. I had a SEVERE headache for 4 weeks with 2-3 migrains on top of it on a daily basis. Also visual problem and photophobia and could not remember where I lived. AWFUL I have had recurrent weakness on left side over the years and after a head pain yesterday it's left side slightly weak again. No one has said it is the sarcoid but I know it is. For weeks now I have also had a recurrence of skin changes, joint pains and sinus problems which are always present but worse at these times. I still work as a nurse but there is no support with my symptoms form my GP so I plod along and deal with it as best I can. My advice is do not stress, it is worrying when you get these symptoms but stressing over it will not help.  This website is great for talking things through and getting advice. Take care of yourself Helen

So, l am 60 and, first symptoms of what could be Neurosarcoid 4.5 years ago. I remain unconfirmed but suspect and am being treated as having Neurosarcoid of the Meningital tract.

However l had a consultation with Dr Desmond Kidd of the Royal Free Hospital last week, and he said he could not see the evidence on historical MRI Scans to confirm or reject Neurosarcoid. I will come back to this...

l first had Sarcoidosis of the lungs confirmed by biopsy 8 years ago following an x-ray and CAT Scan showed scarring on my lungs. I had a annoying and painfull 24/7 cough for weeks which led me to go to the GP who sent me for x-ray. The chest consultant l saw had developed a specific interest in Sarcoidosis and that was a very lucky day that l ended up in front of him.... l will explain

He stated categorically that the Radiologist that reviewed my x-ray was the best there was and was fortunate to have enough doubts about shadows barely visible in my lungs to refer me to him via my GP

From posts on here and other experiences l have come across Sarcoidosis can be mis-diagnosed as COPD for instance, can have a genetic element and can lay dormant and not affecting people badly for some years.

Initially l was given a steroid inhaler to clear up the cough combined with regular lung function monitoring.

Low dose steroid ( predisolone 10 mg) started about 1.5 years later as x-ray showed the Sarcoidosis to be still active.

I had no previous knowledge of the raft of conditions that now affect me and it would have been many years previous that l had last seen a doctor at all (high blood cholesterol levels with statins prescribed.

A very strong feeling l have, is that we need get in front of the right doctors AND BE PROACTIVE in seeking answers. To that end l mentioned Dr Kidd at the Royal Free Hospital in London earlier. This hospital has a unique clinic for Neurosarcoid which covers the whole of the UK and anyone can be referred to him by your GP...... ANYONE!

If you are having any issues with a current doctor... ask for a referral for a second opinion with Dr Kidd. He is very calm and professional and is actively carrying out research into this terrible condition!

Now l wonder how many folks reading this have memory issues?

Memory and balance problems that most affect me with this condition. I am also borderline diabetic, have Periphial Neuropathy, Ostioartritus and will have a hernia operation shortly.

Apart from the above l have a compromised immune system due to the drugs predisolone and lately Methotrexate. I had stopped the methotrexate before Xmas and the effects are still with me. I have not worked in 2 months as l have repeated colds... so take these medications with a good dose of caution.

I will be watching this site now and if anyone has any questions of me...please ask?

Kind regards

David