Sarcoidosis - not enough care and attention given to sufferers

Have you had any of your results back yet or am I jumping the gun timewise?

All parts crossed for good news for you.

hugs

June x

My appointment isn't until Thursday but thanks for your thoughts. I'll let you know how I get on. 

How did it go at the dental hospital? Hope it was better then you thought xx

How are you feeling now?

C xx

I lost count of how many injections there were but I know I never want to go through that again and thankfully won't have to.

They found a hidden tooth deep in my gums but decided to leave it alone rather than go digging for it. I had all my wisdom teeth out under GA in hospital when I was 16 so unless I grew another one or an extra molar I really don't know where it came from. It has never shown up on x-ray before! So strange!

Anyway as predicted I have a raging infection so am miserabe. I'm on antibiotics and paracetamol so fingers crossed it will get better soon. The paracetamol is certainly dealing with the pain and the low grade temperature I have so that is good. It's almost impossible to eat but in desperation I broke up a soft roll and had it with sips of tea today. They said they wouldn't take impressions for a denture for 3 - 6 months! I don't know how I am supposed to eat in that time. Maybe I have found the ultimate diet ha ha!

I will be thinking of you on thursday. The very best of luck. We need to see someone with a positive result for a change so I have everything crossed for you.

Big hugs,

June xx

That is such a long time for you to wait for impression, did he give a reason for this?

I went to my Rheumatologist on Monday and saw the main man for the first time, I felt sure he was going to discharge me, but I was wrong he wants to see me in 6 months, so not too bad the gap has got bigger by a month each time.

He was pleased with my monthly blood tests & BP.

He said the hydro seems to have supressed the Sarcoid which is good news, but emphasised that this medication will not mean the Sarcoid in my lungs will also be supressed and the lungs are the most important factor here.

He did mention regular eye tests

I asked him about the tingling in my hands and wrist and he seems to think it is tendonitus......so not a lot can be done with that one.

I also had my CT scan on Monday but will not get the results from that until I see my consultant in September.

But all in all I seem to be quite well at the moment.

Sending you my very best of wishes xx

That sound really positive, Linda. I'm so pleased for you and I'm tempted to start a Mexican wave but I don't want to tempt fate!

I'm sure the tingling in your hands and wrists is due to Carpal Tunnel caused by the Sarcoidosis and not tendonitis. I have had all the tests for Carpal Tunnel and they were right up at the top range which left no doubt it was Carpal Tunnel. When I refused the operation to have both radial nerves decompressed, my sarcoid consultant said he totally agreed with my decision because the Carpal Tunnel was caused by the sarcoid and therefore there was no guarantee that the operation would be successful. In fact he said he thought it would be unsuccessful because it was the sarcoid causing all the swelling and damage and therefore simple carpal release woudn't solve the problem.

You could ask your doctor to be referred to the orthotic department to get you wrist splints which will help with the discomfort and the dropping of things if this is also happening. I originally bought my own but they cost £19.99 for the pair. They were the best pair of splints I'd ever had but then the company stopped making them so I went to the orthotics department for my next pair. They weren't nearly as comfortable and took ages to break in, but now they are more comfortable. My first pair were made of neoprene and I got the ones with the thumb brace because I was getting severe pain around my thumb. If you google neoprene wrist brace you will find several places that sell them and the price is a little lower at £7.20 excluding VAT. You can claim free VAT if you have a debilitating illness such as arthritis, rhumatics, heart problems etc. I think sarcoidosis is debilitating too so you could put that if you can't think of what to put. It depends on what your GP has written in his files. If you had been to him with joint pain and he had written arthritis in whatever joint then no problem. I don't think the VAT man checks too often but better to have a disorder recorded with you GP.

Anyway that is my diagnoses but you might want to ask your GP for a referral to the neurologist so that you can have tests for Carpal Tunnel syndrome.

Best of luck for September and all parts crossed for the results of the CT-scan. Get those hands check though so that you don't end up with permanent damage. Did your GP offer any help when he diagnosed tendonitis like anti-inflamatories, although I'm sure I read that we couldn't take Ibuprofen with steroids or one of the other drugs. Maybe it was hydroxychloroquine - can't remember.  We need Morag and her knowledge of medication for this one. Ice packs are supposed to help tendonitis to but I think if it's Carpal Tunnel you might find that extremes of heat or cold will only make it worse. It certainly makes mine more painful. The wrist braces would help either way.

Big hugs, hopes and wishes

June xxx

oh dear June, I'm really sorry to hear things have gone wrong following your treatment. Life is soo unfair - as if you didn't have enough to contend with. Others have suggested practical steps, so I shall just send 'begone foul infection' thoughts towards to bugs!

i have also been having problems with tendinitis in my elbows, Linda. I had some osteopathy which helped. But I was told its a matter of trying not to do whatever it is that sets it off, but if that's just getting on with your life, how can you?!

di

June, I'd totally go along with your suggestion about not taking impressions on your mouth for ages because of swelling. I had to get a partial plate last year and I was the same. The dentist I see, about the only dentist I've ever had that I'm not completely terrified of, said then if they take out any more than one or two teeth the current advice is to wait until the swelling is well gone before taking impressions. Otherwise they end up having to constantly adjust the new denture plate as the swelling dissipates and usually have to end up remaking it. Which in turn costs you the patient more money, readjustments with a hard gel stuff are free but a remake costs! 

As the pain goes down you find you can eat more despite not having the usual number of teeth. My suggestions for foods to try are creamy soups (not ones with bits in them) and dunk a soft roll of bread in it; macaroni or other pastas in an easy to swallow sauce, things like that. 

Tendinitis would probably be helped by ice packs because its an inflammation of the tendon (anything that ends in itis is generally an inflammation related thing). So cooling with ice would help reduce the inflammation, at least in the short term. Carpal tunnel is more about nerves being compressed for some reason so I can't see how ice would help. Don't think it would damage you but it could be painful. The wrist braces/splints are a better option because they hold the wrist in a position that should stop the nerve getting the same compression from the way you hold your arm. The thing that is meant to help both conditions, without resorting to surgery, is a steroid injection into the wrist. But its not a cure so no guarantee the problem won't return. 

And finally, thank goodness I hear you say, its ok to take antiinflammatories like ibuprofen with steroids. Just been checking one of the websites I use and there are interactions between hydroxychloroqune and buffered aspirin or paracetamol. But its a minor/moderate interaction - they reckon its ok as long as you don't use them within 4 hr of each other. One tends to reduce the absorption of the other and has the potential to make it less effective as a result. 

Hope all that helps everyone

I ended up with (a free) denture because of his mistake but he didn't wait for the swelling to go down completely and so the denture never fitted properly. It has been the same dentist after dentist so with never having a good fit - the denture has damaged one tooth after another until now - no teeth left to damage. It's so sad because I always took good care of my teeth. My parents always said the worst thing they had ever done was to end up with dentures so it made me even more resolute to keeping them in good condition. Told you there is JONAH tattooed somewhere!!!! This time I will get a denture that fits I'm sure.

I have been eating yogurts but now the weather is a bit cooler I might make some soup.

I found the ice treatment on carpal tunnel very painful, the nerves clearly didn't like it!.

There was definitely something that said no brufen I wish I could remember but then a GP is going to tell a patient of interaction between drugs hopefully so it doesn't matter if I can't remember I've probably been reading an artical that has nothing to do with sarcoidosis and medication! .

As for steroid injections, I'd have to disagree but only in my case so don't take me as an example please anyone reading this. I have had numerous steroid injections and not one worked. They were extremely painful and I waited for the part where it is very painful for a few days then it gets easier and easier but it never happened. I have had, both feet injected several times, ended up requiring 3 operations over many years. Wrist, then told needed operation but refused. Knees, no improvement and still bothers me a lot. Needs operation but not offered and wouldn't agree anyway. Elbow no improvement but had broken the tip off my elbow. My shoulder also injected. It was so painful I was in floods of tears then told needed an operation which I did agree too. I think I am just unlucky and people should go try the treatment and not listen to some like me who has had bad experiences. I also have a huge problem with nerve blocking injections. Again not one has worked. Even the poor dentist had to reinject me as my gums hadn't gone numb. I must be an alien whose nerves don't grow like anyone elses! ha ha! It is horrible though because of course I don't know it's not working until they start operations. I've had blocks put in during operations too that failed. They were suppose to give me a good long period of pain free time so that the physiotherapist could move my arm and shoulder post op. I always laugh now when I'm told I'm getting a nerve block. I always say "Yes, good luck with that!"

Oh dear I sound like a right old moaning so and so. Honestly I'm not moaning just saying what has happened to me in the past.

Ha ha! you still have a long way to go before your posts are as long as mine. I just can't seem to help myself from writing so much. I think it's the isolation and lack of other people to speak to that does it. I'd probably talk the ears of any poor soul that ventured in for a cuppa

xx

Thank you xx

June

xx

So sorry to hear that you picked up an infection that's the last thing you needed. Hope it gets better soon.

interesting what you were saying about this new tooth that hasn't shown up on previous X-rays. I wonder if it's actually a fractured root or a small piece of bone that has fractured off during a previous extraction. Very strange. Sounds like the best decision to leave it alone if not causing bother.

Going to be a tough day with taking my son for an appt with his neurologist then few hours later my appt. my head will be whirling by the end. I' ll have to take notes incase I don't take it all in. I do hope no more investigations are needed & he has all the results he needs 

Take care everyone 

C xx

Me too Linda,  Rheumatologist every 6 months and lungs checked once a year (unless I feel worse). Yep, hydro only helps the joints and not the lungs.. same as any type of NASAIDs I suppose. I feel pretty OK just now, joints are stiff as always but usually not painful. I do have real trouble sleeping just now tho.. keep waiking up middle of the night, lucky if I get 4- 5 hours a night..

Love to you all,

MM

Hope you get on OK today, Thinking of you

Love,

MM

Been a bit of a tough week this last week so sorry for late reply.

I finally got the definate diagnosis of sarcoids from the resp consultant. Good news from my CT scan & X-ray as they showed an improvement in the sarcoids in the lungs & my heart is ok& so he's feels it won't be beneficial to do the lung biopsy  he hopes the condition will get better on its own (I think it's been going on for about 3-4 yrs so hope that is the case & it's v soon)& is reluctant to start steroids as he feels it will be replacing one set of problems with another. As my joints are so painful he has decided to refer me to a rheumatologist for advice as thinks it might not just be the sarcoids that's the problem but also fibromyalgia. I am pleased about this referral as my worse problems has always been my joint weakness, pain & stiffness I just hope it's not too long until I see them & I hope they can do something to ease these symptoms.

he has decided to review my lungs in 6/12 & repeat my X-ray & in the meantimes advised try& b as healthy, stress free as possible & have a manageable work/home ratio & to contact him if further probs. interesting he said don't start taking lots of multi vits as won't do you any good!

I've not fully processed what went on at the appt or looked into fibromyalgia yet as we found out my son has a rare condition on the same day so my mind was&is elsewhere at the moment trying to process that so I'm just concentrating on fact the there's been some improvement from resp cons point of view & I'll get the opportunity to, hopefully, get help from another specialist for the worse symptoms

sorry if waffled on a bit, probably missed lots out & if doesn't really flow right/ make sense just totally exhausted at mo

Take care everyone

Cassy xx

I'm so glad you finally have the right diagnoses. I can imagine what a weight it is off your mind that it isn't anything sinister, like tumours. I imagine it's also annoying though given that you have had to suffer so long with symptoms and no treatment.

Please keep an eye on the symptoms though and if you think they are getting worse in any way you get yourself back to the doctor so you can get treatment to stop it before it gets a hold again.

I found that the Hydroxchloroquine definitely helped ease the pain in my joints, Cassy so it might be an idea to suggest this if he isn't sure what he wants to prescribe. I hope the appointment comes soon and you don't have another long wait.

I'm so sorry to hear that your son is ill too and I hope they will be able to help him.

As for fibromyalgia, it is a condition that causes pain all over the body. The word myalgia means pain in the muscles and the word Fibro means fibre or fibrous which refers to the muscles. Athletes, or anyone come to that,can suffer from fibrous tissue build up in muscles through constant wear and tear. One of the solutions was to dust the area with baby powder and then use the knuckles to make hard circular massage movements in order to break up the fibrous tissue. Don't know if they still do that. They don't know what causes Fibromyalgia, but they think it is due to chemical imbalances in the brain. Some of the symptoms are; headaches, problems with remembering things and concentrating, chronic fatigue, stiff sore muscles, it can also cause irritable bowel syndrome. The patient also has a much higher sensitivity to pain - in other words the pain you feel is all over the body and it's more painful than one might expect, if that makes any sense. It can hit at any time in life but seems to be more prevalent in 30 - 50 year olds

I've noticed an increase in people being diagnose with fibromyalgia over the last few years so maybe it's linked to diet or pollution. When you think what chemicals they put in drinking water it makes you wonder what effect that has on the body. It would be interesting to see if people who drink water from wells in 3rd world countries ever suffer from fibromyalgia as the water isn't full of fluoride and chlorine etc.

It is so true, vitamins can do you  more harm than good especially if you are eating a balanced diet because you will be getting the vitamins and minerals naturally. If you also take them in tablet form then you can have an overdose effect. E.G. Vit A poisoning or severe stomach cramps from too much vit C etc etc. You get the idea.

Hope I've helped a bit with this post Cassy. I know it's difficult by try not to get too stressed over your son's illness as it will only make your own symptoms more severe - something you really don't need.

I hope things get better for you soon.

Big hugs,

June x

So glad you got on OK and finally got your diagnosis. It is really similar to mine (as we have already thought previously). I only really got a steroid injection for my joints when they were at their worst and inhaler for my lungs, other than that I was on steroids for couple of days and they decided it was not required at this stage. My 1st referral was to rheumatologist and then chest clinic from the Rheumatology Dep. I did however have a biopsy which only confirmed the diagnosis. My biggest issue is also joints, stiff and painful but they put me on non steroidal meds , which have kept the swelling off, hydroxychloroquine ( usually used on RA patients).

Onwards and upwards, my issues have calmed down significantly but not quite away yet. Mine is chronic tho, meaning it can always return, but might be "sleeping" for many many years. I am under the observation too in every 6-12 months (12 for lungs , 6 for joints)

Hope you are feeling a lot more positive now

Lots of love& take care

MM

thanks for info esp on fibromyalgia I will let you know what the outcome is when I see the rheumatologist. Will defo b mentioning   hydroxychloroquine to him/her as so many people seem to be getting positive results with it.

I will keep an eyes on things & try my hardest to keep stress levels to a minimum as certainly won't be any good to my son if I'm feeling worse.

Hi Rachael,

I will look into that herbal tea. Thnaks for info. Willing to try anything.

Hi MM,

glad to see you have had some improvement & hope it stays away for a long time.

yep our symptoms are so similar so am hoping they will consider hydroxychloroquine.

I think I do feel more positive as now I've got a definate diagnosis I know what I'm up against rather then worrying that people will think its in my head & worrying about the unknown. I was surprised at the possibility of having another  condition / issue going on & will be happier when they investigate that.

I'm hoping once I've seen everyone I need to & had all the required tests etc I will get a full picture of everything in the hope in time I can start to rule the condition(s) rather than the condition(s) ruling me . 

Take care everyone

Cassy xx 

Glad you managed to get away for a break.

I just thought I would log in and check as since I made my last posting on 5th August I hadnt heard anything [ie never got any email alerts] this happened before and I am not sure why as I hadnt done anything different on posting my last message.

Hope you are all keeping well.