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Author Topic: My Sarcoidosis Journey  (Read 18389 times)
Jet
Forum God
*****
Posts: 616


Bilateral BP, recovered! Caused by Sarcoidosis


« on: 06 May, 2010, 08:51:20 pm »

Well, as some of you here know I started with BP on the right side of my face on 9th Jan 10 after a bad virus at Christmas, swiftly followed by BP on the left side of my face on 29th Jan 10.  

Then I had a bad ear infection which left me feeling like my left ear is constantly against a shell, sometimes with whistling too.  Because of this I was referred to an ENT specialist who sent me for an MRI which I had last Friday.  I was also referred to the eye clinic due to raised pressure in my right eye, the Consultant referred me for a CT scan of my chest as he suspected sarcoidosis, I had the CT scan yesterday and today I saw the eye Consultant.

Upshot is, my CT scan showed evidence of sarcoidosis.  My eyes under a slit lamp also show evidence of it.  Therefore, although I have had Bell's Palsy on both sides of my face it has been caused by sarcoidosis.  For those of you who haven't heard of sarcoidosis, another thing they do is test your blood for raised calcium levels and an increase in an enzyme called ACE.  Both came back within normal levels for me.  For 90% of sufferers, sarcoidosis begins in the lungs, hence the CT scan.

I cannot tell you how relieved I am to finally have a diagnosis.  Yes, I have an illness but it's not as terrible as I was imagining.  It is manageable.  I have an appointment with the ENT doctor on 17th May for the results of the MRI which will no doubt confirm the diagnosis and I will be sent an appointment with the chest specialist to determine how much, if any damage ther is to my lungs.  It is looking like they are pretty much okay as I have no problems breathing and I don't have a cough or get out of breath easily.

I had to persevere to get an MRI scan and if I hadn't gone to the optician, I wouldn't of ended up at the eye clinic and ended up with a CT. To anyone out there who has the same symptoms as me, push for the tests, mention sarcoidosis if you are at all uncertain or in doubt.  It is pretty rare but then BP isn't the most common thing in the world either!

Information about it can be found here, for anyone who is interested:

http://www.patient.co.uk/health/Sarcoidosis.htm

Sorry for the long post guys!
« Last Edit: 22 September, 2010, 10:19:51 am by Jet » Logged

Sarcoidosis medical info: http://www.patient.co.uk/health/Sarcoidosis.htm

Sarcoidosis support and information: www.uksarcoid.org

My Sarcoidosis journey thread: http://www.bellspalsy.org.uk/support-forums/index.php?topic=781.0
LoBo
Guest
« Reply #1 on: 07 May, 2010, 01:55:08 am »

Don't apologize, Jet.  This information is very valuable.  I will bookmark the link you've given us.

I'm glad you have a diagnosis and also that there is a treatment.  You have done the right thing...you took charge of your healthcare, pushed and got the tests you needed for a correct diagnosis.  You've given very good advise to everyone.

Drs. can ignore, avoid or delay, but in the end, we are the ones who must live with our physical problems.  We are the ones who must insist on treatments, tests or different Drs.  Your perseverance has paid off.

All best wishes for a complete recovery.  Thanks for sharing your experience.  Smiley
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Jet
Forum God
*****
Posts: 616


Bilateral BP, recovered! Caused by Sarcoidosis


« Reply #2 on: 07 May, 2010, 09:21:46 am »

Thank you Lois!  It is because of this site that I had heard of Sarcoidosis in the first place and wasn't frightened by the mention of it.  I am very grateful for that.

I forgot to say, my right side is now about 90% recovered and the left about 75-80%.  My energy levels are much better and my appetite is back to normal.  So, despite having this, I'm actually feeling an enormous amount better and I'm doing a great deal more.

I should also have said, the treatment usually offered to stem any inflammation is steroids but more often than not, it's a case of keeping an eye on it and only treating if necessary.  I have steroid eye drops at the moment due to the uveitis in my eyes and I won't know about any other steroid treatment until I see the ENT and chest doctors.

I have something that can be managed and that is all that matters to me.  I just hope my post here can help someone else in the future.  I'll add to it as necessary, so the information is there for others.
Logged

Sarcoidosis medical info: http://www.patient.co.uk/health/Sarcoidosis.htm

Sarcoidosis support and information: www.uksarcoid.org

My Sarcoidosis journey thread: http://www.bellspalsy.org.uk/support-forums/index.php?topic=781.0
juicy
Newbie
*
Posts: 0


« Reply #3 on: 09 May, 2010, 10:51:22 am »

hi jet,
glad to hear your bells palsy is much improved thats great...and wishing you all the best in the future!

Emma  Cheesy
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Jet
Forum God
*****
Posts: 616


Bilateral BP, recovered! Caused by Sarcoidosis


« Reply #4 on: 17 May, 2010, 02:54:49 pm »

*UPDATE*

I had my ENT appointment today and my MRI scan has come back perfectly normal which is a HUGE relief.

My Consultant said sarcoidosis is one of those strange and weirdly wonderful illnesses that you can't predict but it looks like it may have begun in my lungs (as it does for most sufferers) and then gone to my facial nerves only, my glands and now my eyes.  He believes my ear problem is related to the infection I had and a hearing test has shown a real improvement in my hearing in the affected ear and it should heal itself over time.  I may be left with slight tinnitus which I'll just have to live with.  It seems the sarcoid isn't/hasn't affected my brain or nervous system.  He said he believes I will make a full and complete recovery from my BP.

Upshot is, no more ENT appointments unless I feel I need to see him, then I just ring up and make an appointment as I'm on what they call an 'SOS' list.

So now just waiting for a chest specialist appointment to gauge if there's any damage and another eye appointment in June to check on the inflammation there.


To anyone else who is diagnosed with this, DON'T PANIC! It's better to know the cause of your palsy than be left in limbo.
Logged

Sarcoidosis medical info: http://www.patient.co.uk/health/Sarcoidosis.htm

Sarcoidosis support and information: www.uksarcoid.org

My Sarcoidosis journey thread: http://www.bellspalsy.org.uk/support-forums/index.php?topic=781.0
DebbieL
Guest
« Reply #5 on: 17 May, 2010, 11:57:53 pm »

Great news Jet! Thanks so much for the update, and for the info.  You're oh so right.. to know the cause is a great thing.

DebbieL
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Jet
Forum God
*****
Posts: 616


Bilateral BP, recovered! Caused by Sarcoidosis


« Reply #6 on: 03 July, 2010, 11:34:23 am »

Quick update!

At my last eye clinic appointment, my eyes were clear of inflammation.  I now have to reduce the drops I use over the next few weeks and if they are still clear at my next appointment, I can be discharged.  Fingers crossed!

I have an appointment with the chest Consultant on 10th August.  Have to have a chest x-ray and lung function tests prior to the appointment.  The appointment is to see how much damage - if any- the sarcoidosis has done to my lungs.  As I currently have no cough or breathing problems I am hoping it will be minimal.

I feel fine in myself.  My face is almost back to normal, I can drive now too and my energy levels are back up.  The only problem I still have is tinnitus in my left ear but I am learning to live with that.  I also woke up today with a large 'floater' in my right eye (happens with sarcoid) which is annoying but not life limiting.
Logged

Sarcoidosis medical info: http://www.patient.co.uk/health/Sarcoidosis.htm

Sarcoidosis support and information: www.uksarcoid.org

My Sarcoidosis journey thread: http://www.bellspalsy.org.uk/support-forums/index.php?topic=781.0
neilmids
Guest
« Reply #7 on: 06 July, 2010, 12:13:11 am »

you seemto be doing so well jet and im really pleased for you,best wishes onwards and upwards
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Jet
Forum God
*****
Posts: 616


Bilateral BP, recovered! Caused by Sarcoidosis


« Reply #8 on: 14 August, 2010, 12:03:16 am »

*UPDATE*

I finally had my appointment with the chest consultant (well, his registrar) last Tuesday.  I had an xray of chest and still have enlarged lymph nodes same as I did in my CT scan 3 months ago.  He is fairly certain I have sarcoidosis given all the other symptoms I have but has sent me for a biopsy of the lymph nodes in my lungs (Bronchoscopy).  This is the only way they can diagnose sarcoidosis for sure.

My bronchoscopy is on Monday and I'm absolutely dreading it.  I will be sedated and I just hope they give me enough so I don't fight the Doctor and try to yank the tube out my nose!

I feel fine in myself, better than I have for months but I am a little down at the moment as I just want a firm diagnosis and to be able to get on with my life.

Also, still under care of the eye clinic although I'm not having to use any drops at the moment but I do have lots of 'floaters' in my right eye.  Back there in just over a week to see what's going on.
Logged

Sarcoidosis medical info: http://www.patient.co.uk/health/Sarcoidosis.htm

Sarcoidosis support and information: www.uksarcoid.org

My Sarcoidosis journey thread: http://www.bellspalsy.org.uk/support-forums/index.php?topic=781.0
kluget
Guest
« Reply #9 on: 14 August, 2010, 12:30:48 am »

Good Luck with the biopsy Jet, hang in there, you have had a great recovery and have come so far, I am sure yo will get some answers soon.
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LoBo
Guest
« Reply #10 on: 14 August, 2010, 03:49:26 am »

All best wishes, Jet.  You've handled this so well throughout your whole ordeal.  You are very brave and strong and will do just fine!  We'll look forward to hearing about your byopsy and the results.

Take care and big (((hugs)))).
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pj
Guest
« Reply #11 on: 14 August, 2010, 08:42:21 am »

Wishing you all the best for Monday. So many people here will be thinking of you and wishing you well.  You are someone who always makes time to support others here, so the postive vibes coming your way on Monday will bombard that hospital!!
I can't even imagine what it must have been like to have bilateral palsy, so you're a star in my eyes to come through that with the humour and good- naturedness that you've shown.
All the best
pj
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debbie1056
Forum God
*****
Posts: 1390


Fully recovered


« Reply #12 on: 14 August, 2010, 09:06:43 am »

Jet
Thinking of you on Monday
Debbie
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DebbieL
Guest
« Reply #13 on: 14 August, 2010, 02:35:24 pm »

Jet, if you'd like to take us along for support, just write a bunch of our names on a little piece of paper and take us with you as you go for your biopsy!  Prayers and best wishes and optimism for an easy procedure.
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janb
Full Timer
***
Posts: 110



« Reply #14 on: 14 August, 2010, 05:18:33 pm »

All the very best, hope the procedure isn't too awful, you are a very brave lady and an inspiration to us all.
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