Neuro Sarc

Poumons et thorax
1

Hi all, is there anyone out there with confirmed Neuro Sarcoidosis,,, if so did your symptoms include stroke like symptoms i:e collapse , then excruciating head pain and numbness/weakness on 1 side, it's 5 years now since my first collapse but still have numbness and weakness on my left side, also Headaches are permanent now just some days are worse than others,

Today is my 6th collapse and the most debilating yet.

My stroke docs says its not a stroke because not allot shows up on Mri but the numbness and weakness is persistent and I can usually walk again after 7 to 10 days,

My neurologist says its a stroke because the stroke symptoms are still there after 24 hours,,,, the stroke docs says its not a stroke because they can't see it on Mri scan, They won't give me the thrombolisis for blood clots either.I'm getting so f###ed off with it all I really don't want to come round after the next one, because of the uncertainty of what is or isn't on a stupid machine I feel forgotten about while in agony day in day out, All I want is an answer is whats wrong with me, it didn't help much my mum died of 1 massive stroke a few years ago

Help,,, please can anyone had similar problems

PS. Sorry if my spellings aren't spot on I'm a bit out of it

2

Peter, not to be doom and gloom but have you been checked for MS???

3

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

4

Hi David, I live in rotherham England, you just refreshed my memory, the blurry vision and impaired balance is terrible, is used to have an excellent of my surroundings, now I have nothing like that, only my hearing is good and if anything it's gone to hyper sensitive, if more than one person is talking I can't separate one from the other it just becomes a single noise. I have had 4 lumbar punctureS showing raised protein and raised A..C.E factor, thats the marker for active sarcoid in the body, I'm sure there's other things iv had but I'm not good just now I'm on morphine for headaches

5

Hi camey iv had it. before and it was negative but they're doing it again this week, and another lumbar puncture and a Mri,,,,

Honestly if I spend any more time in here the hospital is going to charge me rent

6

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

7

OMG thank you so much,,, I'm not going mad, I'll write more 2mo I'v just had my morphine for the night

8

Good morrow folks, and l thought l was alone with my symptoms! PAH!

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

9

Wow, thank you David, if we all pretty much exactly the same symptoms then why can't we get confirmation and treatment if it's available, I'm all for being the pin cushion for testing, I'm 50 and hopefully a few years left in me I'd rather be a living subject than a corpse with the doc's looking on saying here's something we missed earlier.

I'm sorry if that's a bit harsh but that's how I feel at the minute, I'm still in hospital after another collapse at home with stroke like symptoms,,,, guess what, the bloody docs haven't got a clue. ARRGGHH,,,,,

10

Hi Peter.. if you are in hospital l guess they are responsible for your care. However, once out get in contact with Dr Desmond Kidd at the Royal Free Hospital in London by referral by your GP. I have received 2 letters today, written by him, to my Periphial Neuropathy and Sarcoidosis consultants, asking for additional information before l see him in 7 weeks. I can therefore SEE he is proactive and that gives me HOPE!

I am already scheduled to have a repeat MRI brain scan and lumber puncture and my results will go to three utterly brilliant doctors at 3 different hospitals... such is the workings of the various medical conditions l have. I also have a 4th referral for Ostioarthritus (which may be connected) at St Marys Hospital and looks like l may also going back to Professor Bronstein at Charring Cross for my balance issues too.

There isn't a better team of doctors in the world l would rather be with and l have seen many more in 11 medical facilities in my search for answers so far.

Dr Kidd already has a plan and l only saw him 8 days ago.....l am so pleased I asked for referrals to see him as this gives me confidence to go forward.

My blood group is B Positive....

That is exactly my advice to all..

B POSITIVE and be pro active in the search for answers to these very complex issues!

I wish you all success in your search for answers too

Kind regards

David

11

David I am in the USA and my story and symptoms very similar. Please let me know what happens after your visit. It may be time for me to visit Mayo Clinic again. God speed 

12

Peter, we’ve talked s few times on this forum. Stay strong and like Helen said, try not to stress. Get better my friend is there anything I can do from afar? A funny book and good old western movie perhaps?

13

Hi camey, thanks for the best wish's and thought's just now they're well appreciated just now,,,, this lovely disease we have is really kicking my but now.

I told about collapse about a week ago and the skull crushing headache, well my bowels, joints, sinuses and skin have joined the party now. I still can't walk properly without a frame and the bowel probs are just draining any strength I have , I'm having a bone density test tommorow to see if I can start on a strong dose of prednisolone again but I don't think that will work very quickly, I'll still be on other meds for pain relief for a while, I'll be in touch soon as I'm dosing off again with the meds I'm on

14

Hi Camey, l only saw Dr Kidd once... and that was on my way to my brothers funeral who had died of COPD. He did not hang about, he had asked for information that he had requested but Haas not arrived. I am scheduled to have another MRI brain scan and a further lumber puncture to see the latest data from these. I see Dr Kidd in about 6 weeks time

I hope this helps

Kind regards

David

15

Hi Peter, sorry to hear your woes do not seem to be improving! Do you have a broken sleep pattern on Predisolone?

Get better soon!

Kind regards

David

16

Hang in there buddy, I am in chemo today, I as well am starting prednisone therapy today for a bad flare hang in there my friend.

17

Yes I can't sleep at all with it but I'm now on amytriptylene 100mg at night and epilem 30g morning and night so that helps a lot

18

Just reach out if you need anything!😇

19

Ok...just my personal point of view..... but y'all would be well advised to research and take heed of the side effects of these, at times, very beneficial medications. Especially if taking a cocktail of medicines on a daily basis.

No 1. In Sarcoidosis/Neurosarcoid... you will likely be offered Predisniolone as one of the first attempts to control your condition. This is a great fix if taken short term. It will cause an insatiable appetite and consequently you may put on weight.... Can be a lot of weight.... thereby increasing your chances of developing Diabeties and also possibly linked to the Periphial Neuropathy l have developed. You may also sleep in short bursts of a few hours...rarely a good night's sleep of 7 hours.

No 2 - Methotrexate - Tried this and never again. Can take months to become effective. The side effects ... bruising... Can have a bruise at the slightest prick of the skin. The bruise area following blood test can be frightening and worse... minor cuts take an age to recover. Severe ulsers on the tongue when taken orally and lastly... Methotrexate Hangovers. You can feel crap for days after taking the medication. I stopped taking this drug prior to Xmas. And am still having the above side effects months later.

I have had numerous medications to control the headaches.... and the only effective treatment for me has been acupuncture.

Bye for now

David

20

Hello people, I'm finally out of hospital and back home but yet again I have no answers as to what causes these collapses, a junior doctor suggested I may have F N D which means functional neurological disorder, or as I called it another f@@k@@z get out quick answer. I said to the docs who where there I'm open to suggestions and ideas but nothing to insult what intelligence I have left we shall see what transpires,,,, I will of course keep you informed