Sarcoidosis Stage 3 Is Back After 13 Years - Relapse
Nov 27, 2015
I recovered from stg 3 Sarc (in lungs, lymph, joints, sinus) 13yrs ago, after 5yrs of illness and 2yrs of steroids.
I now have Erythema Nodosum (sp?) - red painful bumps on lower legs.
Research suggests that 'EN' is associated with a specific version of Sarc, Lofgren syndrome, which is usually resolves quickly and without treatment.
I'm scared to go to the Dr, as I don't want to face the tension & round of tests to exclude a Sarc relapse. It's not something I want to go through again...
I wonder if it's very likely for a relapse to come with a whole new presentation of the Sarc? Or is it unlikely to be sarc, as I never had EN the last time?
Does anyone have any experience or advice which may help me decide what to do?
Best wishes to all who are currently battling with their Sarc, I truly understand your pain and your exhaustion. I was not expected to recover last time - but I did.
View 4 Replies
Advertisement
I suffered with rhinitis for 11 years. Took steroid spray which didn't help. Had allergy test which said I wasn't allergic to anything at all. I then had 3 glorious years free from a blocked nose.
Unfortunately it has now come back. I cannot think of anything that I have done differently to cause it to go nor for it to come back.
I seem to have a cycle; one day feel okay, next day or two so blocked up that I cannot sleep and even if I can blow my nose it immediately blocks up again after. My jaw aches from having to breath through my mouth. The next day my nose isn't blocked but continuously runs and I get through boxes of tissues.
The first 7 years I suffered in both nostrils but after that only one nostril is effected which makes me feel lopsided. Why would an allergy only cause problems on one side?
It really is a very antisocial problem and although sounds trivial I know you fellow sufferers can understand how debilitating it is.
View 1 Replies
I have been very unwell for sometime now and have had numerous tests for different things including TB and now Sarcoidosis. Reading what people are saying on here is very uplifting.
When I went to see my consultant again a couple of weeks ago I still did not have a clue what was wrong with me. He then said ok let's go with Sarcoidosis, then you ask what is this and he comes back with Granulomas, small tumors on you body organs. Ok here goes I then ask is this a condition for life will it go away? He said that we will discuss this when you come back next time after putting me on six steriods a day, which I have been taking and have now put on 5 pound in weight.
I am a very happy go lucky lady and will be 49 in May.
The posts that I have read in most cases have been positive.
It is now 3.54 in the morning and not for the first time I am waking up in the middle of the night for a couple of hours then getting up and going to work. Will the mortgage get paid if I don't go to work and would I be covered by critical illness. Such worrying times.
View 5 Replies
does anyone get a very hot head
I feel dizzy and hot but when I put my glasses on the top of my head and take them off it's just wet having to wash my hair every day sometimes morning and night.
View 1 Replies
Told it was a virus. Now it's back again. Anyone ever gets labs a second time?
View 22 Replies
Well here I am back on Norethisterone again after a 4 year break. I didn't want to take them again because I put a lot of weight on but it is necessary because I can't stop bleeding. The distress of constant bleeding which in itself causes anxiety, the tiredness and not been able to go out. Sometimes you have to give in, get yourself right to start again.Unfortunately there seems to be nothing else. Apparently at 53 I am too old to have a Hysterectomy so I am anxiously awaiting menopause.
View 1 Replies
Just been diagnosed with sarcoidosis of both lungs. Also have Fibromyalgia, Asthma and various other medical problems.
Had bronchoscopy and biopsies on Tuesday, felt every one taken from my right lung was in complete agony. Had x-ray 2 hours later and was told there was no pneumothorax and sent home.
On Wednesday I was in a lot of pain, but as I was seeing my consultant on Friday decided to wait to see him and it had subsided somewhat by then. Told him about the pain and he sent me for another chest x-ray which confirmed I had a pneumothorax, which he said would heal on its own.
I have to go back next week for another x-ray to see if it has healed.
He said that he wouldn't prescribe steroids at the moment and will be sending me for another lung function test in the next 3-4 months to see how things are going.
Just feeling very tired and slight pain from the pneumothorax.
View 1 Replies
Just found out I have hpv...cervicitis...and just had a relapse of ebv. Been 3 months of hell what could be causing my body to all of a sudden be reactivating viruses? Hpv is new but I'm sure I was exposed 10 years ago and I got ebv when I was 15. My blood work was mostly normal I have high ALT (SGPT) Levels at 40
I have high platelets 534
A high count for EBV which is mono. ENT wasn't concerned about anything else besides the mono. But that it's not active anymore. Still have awful symptoms my throat hurts feeling sharp pains in my abdomen. I have a low risk strain of hpv everything came back normal with my biopsy and colposcopy except that i have an inflamed cervix. my symptoms won't stop! !! Feels like even more is going on since it just seems like my body is pulsating diseases through my veins. It's awful. It hurts and it's uncomfortable.
View 47 Replies
I am a 33 year old female I do not drink and do not have hepatitis or any type of disease. I was diagnosed with an enlarged liver but after a sonogram and blood work was told I just had a big liver. About six years ago I had my gallbladder removed I was told it was rotten and was functioning at 0%. My symptoms didn't totally go away but was better until about a year ago. I have nausea,severe back pain,pain and bloating in the upper middle and right side of my stomach,itching,a burning sensation beside my rib cage and I sometimes break out in a rash always on my neck and chest. None of this is normal and my liver has not always been like this I feel I have been misdiagnosed ...
View 1 Replies
I had my spleen removed during bariatric surgery because the surgeon accidentally ruptured my spleen. The surgery was in 2010 and I still have pain in that area quite often. My surgeon says if I see another doctor about the pain he will drop me as a patient. Why would my spleen area still hurt and what tests can I have to find out what is causing the pain?
View 1 Replies
Back in January 2012 I contracted Glandular Fever and was sick for a couple of weeks. Ever since then I have had a sore throat on and off and nothing it doesn't seem to be getting any better. I get frequent mouth ulcers, the back off my throat is almost always red and patchy with ulcers and sometimes I even get the on my uvula.
I have seen my GP about this a year or so ago and was referred to a throat specialist who pretty much told me to wait it out, but it is very frustrating considering it's been over three years. I have also noticed that alcohol seems to make the problem worse, but being at uni I didn't have much chance to avoid it. My general health is relatively good, if I pick up an infection intend to fight it off quickly and don't get that sick. It's just this which is more frustrating than anything. The only other thing I would say is that I do have mild hay fever and always seem to wake up with phlegm in my throat so I'm not sure if this attributes to it.
View 3 Replies
I'm a long time sufferer of low back pain (20 years, I'm 42). I believe I've given my diagnosis & previous treatment rundown on a previous post, but I'll post it here again, hopefully short and sweet:
Last MRI (Feb. 2012)
Bulging L4-L5, Herniated L5-S1 (Central Annular Tear, 6mm protrusion)
Previous MRI in 2008 showed basically the same as above.
I have tried most therapies & treatments, including but not exclusively:
Acupuncture, TENS, PT, ESI in 2008 & 2012, Prolotherapy, Mackenzie Stretching, Chiro, Massage.
Some of my main activities that I've had to scale back to, and serve as productive exercise:
Walking everyday, inversion table, swimming, Mackenzie stretching.
I used to do martial arts and grappling and have not done so in a couple years now.
I have a hard time now with doing things that I HAVE to do, like working around the house or sitting in my car to drive to work as a couple examples. I cannot do any type of sports that have ANY kind of flexion movement. (I'm able to swim because my back is in extension position)
I've been reading some posts regarding folks who've had the microdiscectomy procedure done, and I've met with many neuro and ortho surgeons during my long journey. I've also begun to research BMSC treatment as well, as this is proving to be very promising, but is still in the very early stages of acceptance and use in the States. I've always opted to not have an invasive procedure because of fear of it not helping and possibly making things worse.
However, I'm just tired of the conservative approach not working and I'm tired of not being able to fully live my life.
Believe me, I understand there are many that are worse off than me and I wish I could help you because I know how bad chronic pain is and what is does to you physically AND mentally.
All the doctors I've ever seen look at me (at 5'9, 150 lbs, lean and "looking" healthy), and I pass all the "strength" tests they give me. They tell me to go conservative, which I fully respect. However, just because I look healthy and can pass them pushing on my legs and feet while I resist, and I'm not losing bladder or bowel control doesn't mean that the slightest move or overdoing it won't put me down again.
Case in point, (After 2 years since my last episode and the walking and my conservative exercising not giving me the progress I'm expecting after 2 years), I decided to, (at the recommendation of a sports med doctor), to go see a well respected and very highly recommended, (by friends), PT Strength and Conditioning coach. He put me through an initial PT type evaluation and I had my first session last night. Well, about half-way through, something wasn't feeling right. We scaled down the workout, (which was pretty conservative already), to just stretching at that point. Long story short, I'm now back to stabbing pain, radiating leg pain and tingling, and standing crooked and not being able to sit down.
I'm really beginning to seriously consider surgery, or possibly explore BMSC treatment for the disc(s). I'm sure since it's been 2 years from my last one, I'll need another MRI before doing anything.
My question is, what would you do if you were in my shoes?
View 14 Replies
Has anyone looked into treating the autoimmune part of sarcoidosis, if so, what was the outcome?
View 17 Replies
I have lumps in my lower legs, shortness of breath (COPD) that is getting worst, even though I haven't smoked in a year. My eyes are not affected, just had them tested. I have been on leflunomide 20 mg for 2 months and lumps are going away. Doctor also put me on O2 at nighttime. My entire itches and that is driving me crazy, I take a baths only every 3 days, and have used all kinds of skin cream, nothing works. I have itches for 5 years, not allergies, that has been ruled out. Sometimes I itch worse than other times. I have also had all kinds of blood tests and the results always come back being OK.
View 11 Replies
I am a 55 year old female and have had back pain at my right shoulder blade for 5 and a half years. The pain sometimes extends to the end of my back just under my right arm and sometimes goes to my spine and upper shoulder. The pain is excruciating. Chiropractor for 1st. year said rib out of place and needed to strengthen muscles, but the exercises hurt too much. Went swimming as much as possible. 2nd. one said arthritis, his x-ray showed nothing at the point of pain and a little arthritis. Saw an orthopedic doctor two years ago and his x-rays showed no pinched nerves. Many questions later and after standing behind me and twisting me around he said he thought it was a nerve. He prescribed Neurontin and an MRI. Had no insurance at the time, so skipped the MRI. Still on Neurontin, but no relief. Take heavy duty pain pills and spend every night in bed on an ice pack in tears. I know I need the MRI, but do I see another ortho doc or neurologist?
View 8 Replies
I had the Nissen fundoplication in 2011 for a hiatus hernia, for the past year have been getting my symptoms back and have been struggling with lifting and bending as makes my symptoms worse.
View 6 Replies
i had a filshie tubal ligation done in 2007 at the age of 26 and was wondering what the chances are of getting pregnant. my period normally visits me at the beginning of the month (within the first week) it is now the 24 and still no period is that normal?
View 1 Replies
Well I had a small boil on the inside of my nose for months and it just wouldn't go away. I visited my NHS Dr who prescribed some cream, nothing happened - he advised to continue using it and suggested perhaps getting it cut off. Anyway I visited the Dr at work who advised getting it cut off which I thought would be end of it. But to my dismay they did a biospy on it and found out it was Sarcoidosis. My mum has this so I was aware of it. I was devasted. This followed with CT scans, lung test, blood test which confirmed Sarcoidosis on the lungs and enlarged nymph nodes. After a long consultation it was decided not to treat it yet as I had no other systems. But a couple of months later I developed a cough, two months later I am still coughing and on exertion (netball albiet quite a bit of running around) I end up having a sort of ashtma attack. Anyway to cut a long story short this is all related and have been prescribed steriods and some other stuff to counteract the side effects. I am really reluctant to take them but after reading the different views on this site with all the different effect I feel I should start taking them (waiting for the NHS to reluctantly prescribe them) before it gets worse. I am wondering now if I have had this for ages as the symptoms of tiredness, aching neck and shoulders I have always had but just thought it was me. My mum was diagnosed 20 years or so ago and it has only just flared up again but in the bones of her ankle. She has trouble breathing which they have said is asthma...
View 1 Replies
Due to Sarcoid I have an enlarged spleen & liver. It seems that other sufferers have the same problem. Question; has anyone found a solution to this problem. I have not heard any discussion on this topic ever?
View 2 Replies
I have been using Lansoprazole for nearly 4 years, I am on 30mg daily, it works great, and I rarely get heartburn these days.
However I have for the past year been experiencing severe lower back pain, pins and needles, strong headaches and more recently dry mouth and dizzy blurred vision.
I stopped taking the Lansoprazole for couple of days, to see if side effects would go away, but the heartburn came back with a vengeance.
So I am having to choose between which is more unbearable, back pain etc. or the heartburn.
I have chosen at the moment to go back on lansoprazole, but if anyone knows of an alternative that works as well, but with no side effects, let me know.
View 1 Replies
I was diagnosed very early around 5, so I just had to wear a brace with yearly trips to the Shriners hospital for ortho checkups, the only issue is my right leg is slightly shorter and have had to wear a lift in my shoe. My question is, has anyone had lower back issues possibly due to the Lcpd? I've had lower back issues for several years, I'm 36 is it possibly just older age.
View 19 Replies
