Neurosarcoidosis, does anyone have any experience of this frustrating condition?

[Foxy07]

Has anyone ever suffered with neurosarcoidosis, my ACE blood test came as 64 & it should of been 50. Doc sent me for chest X-ray thankfully it came back clear. My symptoms are, memory loss, numbness in my face along with pins & needles. Weird earache & hearing loss. Iv suffered with numbness & pins & needles in both my feet & hands for a few years. Some days I really think I’m going mad & weeks later I feel almost ok. I’m desperate for a diagnosis, next appointment with neurologist is in July. Any advice would be appreciated. Xxx

[hypermobilecat]

Dont know if this will help. Our family been dx by a geneticist with ehler danlos syndrome. I have this ehler danlos syndrome and other year found to have nodules on lungs which looked like sarcoidosis. Myself and children have lots of weird problems. Had facial neuralgia. Bells palsy. Ear aches etc. Skin problems. Migraines and epilepsy. Daughter age 40 having lots of problems like pumping feeling in head. She is going for mri this week. Which is very quick. Everything so random. Yet scans show I have twisted spine. Osteoporosis. Spondylosis. Nodules on lungs suggesting sarcoidosis. Had skin complaint on face and the dermatologist said it was cancer. Had a cone biopsy and it wasnt. This after face ache and tingling my daughter feels at the end of her tether. Think she is relieved going for mri. Have you had any scans?

[Foxy07 in reply to hypermobilecat]

Hi & thanks for your response.

Wow sounds like you are all having a terrible time, fingers crossed your daughter gets a diagnosis from the scan. I know a tittle want make me feel any better but I’m just desperate to know I’m not going mad. All of my symptoms are hidden so to the outside world I look ok but inside I’m hurting & getting really fed up . Xxx

[hope_4_cure]

I have had neurosarcoidosis since 2012. I have numbness and pins and needles in my legs and feet all the way up to my groin. My neurologist says they don’t know the cause and there is no cure. It first began suddenly and I could barely walk. I have been on Prednisone and gabapentin but they didn’t help.

Now I just grin and bear it. I try to exercise as much as possible because I’m afraid if I don’t, I’ll lose mobility. My doctor says the neuropathy will not improve. At least my lungs and eyes are okay so far. They monitor them yearly but have not been followed by the neurologist.

[Foxy07 in reply to hope_4_cure]

Hi Hope, huge thanks for taking the time to respond, do you mind if I ask how old you are. I’m 51, a very young 51 😁 and I have been suffering for a couple of years I believe. The memory issues have really hit me hard in the past 12 months & I have recently had 5 months off work & am due back next month. I have to admit I am dreading. I tried duloxitine that really helped at a low dose but at the high dose I just became very dizzy. I can’t believe you have been suffering for filing without any real help. How do you feel about that?

I have recently started to get the pins & needles & numbness going up my legs especially the left one & I too have pain in my groin. Is your groin issue pain or numbness or both? So sorry for all the questions it’s just so helpful to me to know I’m not going mad & someone else has these bloody awful feelings.

Did they ever offer you any steroid treatment? How much is your memory & brain function affected & are you able to work full time.

Huge thanks

Xxxx

[hope_4_cure in reply to Foxy07]

Hi

I just turned 70, so it’s not just young people that get it. Luckily I am retired. I don’t think it has affected my memory.

My groin issue is just numbness. I was initially put on prednisone for about a month, and I guess it did help then, because at first I could barely get out of bed.

I do wish there was more support here but I live in a small city of 200,000 and not too many have heard of sarcoidosis.

[Foxy07 in reply to hope_4_cure]

Hi Hope, glad to hear your memory is not affected, it’s frustrating that there is so little knowledge out there even in the health care practice. I guess you are not in the UK, I have a follow up appointment with my neurologist but not until July. I am also seeing a neurologist for my memory and have my next appointment later this week so I hope they will be able to help me.

Take care

[hope_4_cure in reply to Foxy07]

I notice many of the people on this website are in the UK, which seems to be far ahead in the study of sarcoidosis. I live in Regina, Saskatchewan, Canada so do not have access to much.

Have you joined the Sarcoidosis group on Facebook?

[Foxy07 in reply to hope_4_cure]

I didn’t even know there was one, I’m new to Facebook. Thanks for the tip, I will take a look.

[SarcoidosisUKTeam]

Hello,

Sorry to hear that things are so difficult for you at the moment. It sounds like there's a huge amount going on for you.

We have a Nurse Helpline which provides confidential support to people with sarcoidosis, including neurosarcoidosis. You can find out more and book in a call here: sarcoidosisuk.org/support/n....

We also have a leaflet on neurosarcoidosis which you may find useful: sarcoidosisuk.org/Sarcoidos...

Best wishes,

Alan

SarcoidosisUK

[tjg16]

I know some people that have it.

More info at sarcoidosisuk.org/informati...