Thanks Rachael. That's not going to happen unfortunately. Raised the subject this morning and got a load of abuse. Cheers.
Thanks, Kirsty. Right now I am just waiting to be admitted to hospital to receive IV methylprednisolone. Will see how I respond and keep mycophenolate in mind. I'm not sure if it's often used for cardiac involvement...? I know methotrexate is, was on it before and it seemed to help. I just hope something sorts me out, and soon! Best wishes.
Hi Morag,
thanks for the message. I have emailed the ward. Unfortunately, I am not just waiting for an appointment, it's a four day admission. So, I know it's hard to fit me in for everything I ended while there. But, I am really struggling here so hope they can do something for me soon.
I suppose it's always possible, but my ICD seems fine and the episodes are identical to ones I had before and it makes sense my heart would be affected since we know the sarc is going a bit mad in my body at the moment. Checking the ICD is indeed simple, it only involves placing a magnetic wand over the device and running various tests and changing settings and all. It is only if it really does malfunction or a lead breaks or something along those lines that it would mean going into hospital and being opened up again. Best wishes to you.
Oh dear, none so blind as they say. Thinking of you
rachael
Oh Gustav I'm so sorry to hear that you have no support. I totally agree with Rachael that you need to sit down with your partner (if possible) and show her all the literature on sarcoidosis and all the posts in the different forums on sarcoidosis. I bet if the tables were turned she'd be looking for lots of support. Getting stressed out about her lack of support and understanding isn't doing your sarcoid any good either.
You could try taking her with you to all your doctor appointments (or even just one) so that she can ask questions herself. Personally I think she is being very selfish and mean and doesn't deserve a partner at all if she cannot give support or show any empathy.
My husband and soulmate sadly died 14 years ago but I know if he were here today he would have given me all the support I needed along with his unconditional love.
I hope you can get her to rethink the way she is behaving and I hope it is only because she is ignorant of the effects of this disease. The only answer is to talk about it.
In the meantime remember you have all the support of the many forum members so you can spill all your feeling and fears anytime here.
Best of luck,
Big cyber hug ()
June
Hi Felfin,
Your doctor is right that Amitriptyline is a bit old fashioned and to be honest I asked for it because no one was offering me any help. My GPs are penny pinchers. They even fought with me when I asked for enteric coated medications because I was getting nausea and gastric problems. However I did find the amitriptyline did help with some of the depression so I'm glad I asked for it. (any port in a storm as they say!)
As Morag said call your consultants secretary too. It is amazing how they can help with things like bringing your appointment forward because they have access to cancellations and have bigger clout than the wards. The wards have to comply with what they are told and who will be admitted and when, whereas the secretary can shuffle admissions around if need be. Give it a go, you've nothing to lose. Just remember to tell her how your condition has deteriorated.
Good luck,
June
Hi Gustav,
I am sorry to hear about the problems with your partner. I am lucky, my husband is supportive. However, when I was first diagnosed we were sharing a house with my sister and she was downright cruel to me. She said at first it was all in my head, then that I was exaggerating, just wanted attention, and finally that she had lost all respect for me and was ashamed of me. It made it so much more difficult. I asked her to come to doctors with me to hear things directly from them, but she refused, saying she wouldn't feed into my hypochondria. We moved out and eventually moved back to the UK. I didn't speak to my sister for three years. I just couldn't have that negativity in my life.
I am not saying you should break up with your partner. But, I don't think one should be in a relationship that is unsupportive and even damaging. I know it is scary to think of being on your own, but I dont think you should keep putting up with that sort of treatment either. Ugh how horrible. I am so sorry.
i obviously don't know you or all the details of your situation, so please don't take any of my 'advice' too seriously. I am just saying that nobody should have to suffer like that from a loved one. If you can get her to go to a doctor appointment with you, then great. She owes you that much at least. Good luck and in the meantime, remember you can always get support here, but of course, it's not the same. Best wishes.
Sometimes the people closest to us are the ones who find it hardest to understand a condition. I'm not in a relationship but my mum complains that I'm either very distant or exagerating and doesn't seem to get that at times I'm distant because if I actually say how I'm feeling I'll get the "exagerating" comments.
Hopefully you can find a time when you can both sit down and talk sensibly about your condition and how it can affect you. I guess because its a relatively rare condition and not very well defined - its an inflammation that can affect almost any organ of the body, not sure exactly what causes it but the symptoms vary in type and severity depending on where its located and how badly the person is affected; oh and it can come and go as well - its not the easiest concept for anyone to get their head around. Even if you can persuade her to look at the basic info on sarcoidosis on this site that might help. That where my GP started me off when I was told by the consultant that it was a potential diagnosis
Hi sorry to hear your going through hard times atm. I've recently had a biopsy to determine if I have sarcoidosis or lymphoma as they cannot tell which one it is. I have trouble breathing to. What were your first symptoms and how long did it take for you to get a diagnosis?
Best wishes
Dom
Hi Dom,
thanks for your message. Many of us were faced with the lymphoma possibility in the beginning. Being told you have sarc is a relief, but it can sometimes turn out to be worse than cancer! Not to be a downer. Cancer is terrible, so is sarc, or at least, it can be. Either way, I hope yours is not severe and can be treated easily. My first symptoms back in 2006 were actually what I thought were more neurological. I had a cranial nerve palsy in 2005, so became very worried about a brain tumour and MS when I began to have dizzy spells, strange wet, hot and cold, pins and needles sensations up my legs, almost numbness, muscle twitches all over my body like crazy, and then 'brain fog'- I suddenly couldn't spell anymore (used to be fantastic), began to switch words and syllables around when speaking, couldn't find the word I was trying to think of, etc. Also, I was just feeling fatigued and full of malaise, a bit depressed (of course, some people were telling me it was all in my head, which didn't help). I just didn't feel right and knew something was wrong. I actually had no lung symptoms for years and no cardiac symptoms until 2007. Then I had palpitations. My spinal MRI revealed enlarged lymph nodes. From first dr. Visit in 2006, to diagnosis was about 3-4 months. I do think I had it when I had the palsy and maybe even in 2002, when I had a strange mumps-like problem for months. So, I was lucky in 2006, but depending on how you look at it, it either took me years or months to get properly diagnosed.
It was only about nine months ago when I first began having breathing issues. When I walked too fast or too long, I get out of breath. Especially when I tried to carry a laundry basket up the stairs, I would get all dizzy and breathless. I'd have to sit when I got to the top to recover. This was just up a normal domestic staircase. I also noticed when I walked the half mile to pick my son up at school that if I tried to chat to friends when I got there, I always had to catch my breath. People would comment that I was all 'huffy and puffy'.
Anyway, now I am on oxygen and it does help a bit but I am hopeful some real treatment will actually improve my lungs. They just don't give the rest of my body enough oxygen.
Good luck. Wishing you all the best and keep me posted. If it turns out to be sarc, please keep in touch. X
Well put Morag. You know I was trying to think what the doctors had said to me and it dawned on me that not one of them told me what sarcoidosis was. I don't know if one thought the other had explained it but I ended up getting all the information on-line and thinking how little information there was.
I was also thinking that people we love get frightened as to what is wrong and get angry with us rather than at the disease I suppose. With so little information I guess people get frustrated too so think we are malingering. It is a terrible thing when you have to 'prove' you are ill!
Think you have hit the nail on the head there June! As you rightly say we are constantly having to justify our condition. DWP take one look and think because there is no visible disability that there is nothing wrong with me likewise work treated me in the same way although in fairness occupational health did back me up and told me to go home and forget about work! My tribunal which reduced me to a gibbering wreck fortunately found in my favour but not before I had said to my sister that we shouldn't be made to feel like this and have to justify our existence. Sometimes it feels like we are used as whipping boys however the relief when they concede there is something wrong with you is immense but in no way compensates for the angst it causes along the way.
Yes right back at you Rachael. It's so degrading sitting there being asked if you can raise your arms above your head or at least high enough to hang your coat or if you can carry a pint of milk (sorry a litre). If you can then you are rated as fit for work!!!!! Like you mine went to tribunal too although thankfully I didn't have to phisically attend. I wrote them a very angry letter asking them how they could decide I was fit for work when they hadn't even asked my GP anything. I had to attend the jobcentre and at that time I was swathed in bandages following surgery on both feet. I looked like one of those cartoon characters. I was in so much pain but if I hadn't attended I would have lost all benefits. Then you see the true malingerers getting their benefits without even trying and it makes you so mad. I am so dreading filling in my the PIP application next year. I have an indefinite DLA claim but apparently that will mean nothing. I bet they will have me off all benefits and back looking for work, illness or not.
Jeez you have rely be through the mill. One thing that does come to mind is what you said about brain fog. This has been happening to me of late but I've thought nothing of it. Will let you know the result
take care
Dom xx
I've had everything from being called a "fake" to being told that I look into the condition too much online. For someone who has had so much support from me over the years, I feel totally betrayed and devastated. Thankfully there are resources such as this. Cheers.
Felfin I've just read your first symptoms and I have exactly the same, so much so is it's scary! I had a brain scan to rule out MS then they thought it was CFS but last week I had a ct scan which showed sarcoids behind my heart and lungs, do you mind me asking where your sarcoidosis is? My lung x ray was clear and I never ever cough but I have the tingles, numb patches, breathlessness, muscle jumps (you can watch these they are so crazy) dizziness, horrible fatigue, and the tingles (which I call whooshes) are all over, legs, head, arms, back! I haven't seen my doc yet so I don't know much yet but I was honestly feeling like a complete hypercondriac with my list of problems as long as my arm! I have been on amitripilne for the nerve pain but I guess that met change now. I hope you are having a 'good' week x
Sorry me again I've just read the rest of the discussion doh! I only joined today so forgive me! One quick thing though felfin, I was on prescription co codomal for 3 months and the neurologist I saw was horrified by this, I took them every 4 hours cos they made me feel not so ill, but he said they are addictive, you get an instant come down when you try to stop taking them, so he prescribed a low dose of amitripyline but not for depression but as a pain killer. They don't suit everyone but I have 10mg every night and I no longer need paracetamol or cocodamol of ibrofrufen, I think it has really worked for me but I realise we are all very different. Take care x