Sjogren's Syndrome - exhausting journey, medical discrimination, legal battle?
Posted , 6 users are following.
I live in the UK Buckinghamshire around RAF Wendover, I see a doctor regularly complaining of sjogren's symptoms having done so much research online, they referred me to a rheumatologist in 2017 who diagnosed me with SICCA complex at 35, after decades of suffering and having a sister 46 with secondary sjogren's which complicated to non hodgkin's lymphoma of the parotid gland, who was only diagnosed with arthritis in the lumber spine at 43, despite her joint pain over 20 years, I really wonder about REINFORCEMENT OF LEGISLATION AND LICENSING ''entitling'' any medically qualified person to dare say they have expertize in a certain field or are a ''specialist'' with X number of years experience ''just because'' they have seen the same symptoms time and time again and therefore will not accept that they need any further clinical training, broadening and researching to understand the complexity of this condition.
I am sick to death of repeated visits, nonsense medical reports / summary / clinical reviews / medical evidence that doesn't count towards my condition. I have identical symptoms to my sister, sjogren's is genetic and I am predisposed to it. I am so sick of having keep explaining this.
My sister's health was oversighted and disregarded for too long which left her with no option in the end other than filthy radiation putting her back at risk of remission down the line.
The FDA, CCG's, GMA, parliamentary ombudsman, and NHS England - are absolutely useless regulators in the UK. They are all in it together defending each other and never in the interests of the patients, they are also very corrupt organizations.
The only reassurance I'm getting is hearing there is a sjogren's support group meeting up in Oxford once a month, the nearest to me, I live alone, disabled, don't drive and this is far away.
My symptoms are:
''extremely dry burning sticky eyes light sensitive''
numb thigh - parasitic myalgia
''dry blocked nasal cavities constantly sniffing worse at night time in bed ''
''ear dryness causing itching irritation and excessive wax, sometimes flaky, sometimes runny''
''dry throat, voice hoarseness, metal tastes and occasional sores, ulcers, cuts in my mouth, - i'm an ex smoker, so my mouth might be repairing itself.
Here comes the grim stuff.. ''digestive, malabsorption of nutrients / enzymes, diverticulitis, bowel processing problems, everytime I eat or drink something I poo, basically! '' My stools can vary from uncontrollable slushy diarrhea and tissue turns red after wiping bum, to ribbon smooth soft logs, to hard tiny pebbles / pellets, to excruciating bowel cramps pushing large thick chunky solid blacker poos and constipation that can last an hour, my bum often tears or get a hemorrhoid in this case!!!!!!! I'll have a mixture of reactions to food, sometimes I can drink milkshake and eat cheese, yogurt - no problem, but other times I'm have a severe adverse reaction. ''
''I can never account for considerable weight loss then sudden weight gain after a single meal - my metabolism is very slow to a point it's worryingly slow''
''respiratory problems shortness of breath and wheezing'' ( laid down and sitting upright still )
''extremely dry itchy skin, sometimes rashes''
''vagainal dryness, pubic itchiness and the ocaasional hard painful boil around the vagina which disappears by itself after a couple of days but doesn't seem to ever burst or weap in the same way the cysts on my breasts do, due to the hidradenitis suppurativa... ? .. i'm puzzled by this..''
'' celiac lactose, IBS. ''
'' Intermittent hot body flushes ''
'' arthralgia joint pain, a pre arthritic condition ''
'' 2nd stage lymphedema in the legs ( is apparently reversible and caused by morbid obesity 160kg - unless it hits stage 3 then it's incurable ) ''
'' chronic fatigue '' - not simply '' fatigue ''
'' dryness in all my organs''
''feeling like constant flu symptoms / infection, temperature, but when doctor checks there isn't one, it's all ''normal '' so I've always felt like a burden in their office making a fuss
In terms of mental health:
depression, childhood trauma, obsessional thinking
''Maladaptive daydreaming ( MDD ) and identity crisis ''
My actual diagnoses are fairly pathetic and consist of :
SICCA complex ( at the facial area )
'' enlarged spleen '' diagnosed at 12 years of age by a rhumaotlgost despite being there with parents for joint tissue problems clicking neck and all my other ligaments
'' GSH hormone abnormality - raised thyroid '' which now has to be tested every 6 months and I believe is a new symptom linked with having had a CT scan in 2015, there is a lot of talk about CT vs thyroid cancer just by googling it. But in any case I've had symptoms for longer.
''hidradenitis suppurativa'' - possibly weight related and likely
''poor concentration, Generalized anxiety disorder with ''residue'' of dissociative personality '' - no professional makes a thorough diagnosis in a 45 minute tick box initial assessment. The idea of an assessment is to see if you meet the service criteria to access the ''help''.. I didn't pass.
Please join in the discussion if you have sjogren's or like me are battling to convince the medical profession.
0 likes, 14 replies
Anonymous111 RubikinDSilva
Posted
Is your spleen still enlarged?
Have you had treatment for Hidradenitis?
Dissociative personality - Phenomenally rare - Have you seen the documentaries about people with this?
RubikinDSilva Anonymous111
Posted
Cheers Ben.
I've copied from wIKIPedia.
Anti-SSA autoantibodies (Anti-Sjögren’s-syndrome-related antigen A, also called anti-Ro, or the combination anti-SSA/Ro or anti Ro/SSA autoantibodies) are anti-nuclear autoantibodies that are associated with many autoimmune diseases, such as systemic lupus erythematosus (SLE), SS/SLE overlap syndrome, subacute cutaneous LE (SCLE),neonatal lupus and primary biliary cirrhosis.[1] Also, they are often present in Sjögren's syndrome.[2] [3]
Presence of Anti-SSA/Ro in pregnant women with SLE is associated with an increased risk of [congenital heart block in the fetus].[4] Ro protein binds to Y RNA.
it's a lot of medical jargon to get my head into!! I'll ask for it to be included in my next blood test.
I haven't had my spleen re-checked, you've just given me a nudge to have it re-tested, the hidradenitis is dealt with as and when it flares up, either by antibiotics or previously savlon / dettol baths to keep the infected area clean when the cysts burst.
Yeah I've seen films on psychopaths etc.. although i've got all my mental faculties together, it's learning how to best manage it before I wind up a nut house!
Anonymous111 RubikinDSilva
Posted
Did they ever explain to you why the diagnosis was SICCA complex rather than SS?
If the Hidradenitis is getting worse - you might want to consider Roaccutane therapy.
Are you sure you have MPD?
amkoffee RubikinDSilva
Posted
I live in the US so I will give you some suggestions but you're going to have to excuse me for getting some information wrong.
We here have something called a medical board where a group of professionals oversee all the doctors in America. They have the authority to pull their licenses, set up training for the doctors and various other things. So they are a very strong and important group. If you have something similar it might be worth going in that direction rather than through laws. In our country our doctors of certain specialties are required to get continuing education. And I think any doctor that leads a patient to believe that they have a specialty in that field would be reprimanded by the medical board if they didn't have the credentials required.
I want to address the blood that you see in the toilet after you have a bowel movement. If it is bright red then it is from a hemorrhoid or two. Blood in the stool is dark black.
About your metabolism running slow. You mentioned that you have hypothyroidism. That will definitely slow your metabolism down and affect your weight gaining and losing. I'm glad to hear your doctor has you checking it every 6 months instead of only once a year.
I don't know if I was any help at all but I hope I gave you some information. I hope you get something straightened out about your health.
RubikinDSilva amkoffee
Posted
Yeah I think the UK equivalent is our so-called regulatory commissions and medical council, I've been through them and raised matters about ''SS specialists'' they just get shy of doing any work and go against the patient's requests, it's rare that an investigation goes in our favour.
Anyway, Phew! stools are OK, thanks for clarifying, we are normally told to check for blood not what colour it should be, again, thanks for giving me some peace of mind.
And the hypothyroidism is a contributing factor to weight loss vs gain, that's good to know, because now I will swapping fats, sugars and carbs for vegan raw diet. Sugar as we all know,
( and in too much fruit consumed ) is the main cause of diabetes and feeds cancer cells.
So starting today, I will be eating 50% raw juiced plant food, not GM, no synthetic dyes, added preservatives, man made food, because I'm hearing often a vegan diet is curing disease, slimming and communicating with our DNA.
amkoffee RubikinDSilva
Posted
I just want to correct you on one item you said in your last comment. Consuming sugar even in fruit is not the cause of diabetes. It will not cause diabetes by consuming even great amounts of sugar or carbs for that matter. The cause of diabetes is because the pancreas stops working efficiently. And the reason why overweight people tend to get type 2 diabetes a lot is because they are heavy and that puts a toll on our pancreas making it work harder than it was made to do. So after years of working for a large body it starts to peter out. And type 2 diabetes very often can be reversed by losing weight. And type 1 diabetes is something you're born with and is typically diagnosed as a child.
RubikinDSilva amkoffee
Posted
Oh well thanks for educating people, the mainstream media is reporting it the way I described which is why it's so confusing!
Anonymous111 RubikinDSilva
Posted
I'm going to chirp for what its worth
You're not born with Type 1 - Its an autoimmune attack on the Pancreas and strikes generally in childhood or the teenage years, but can occur for the first time in adults. After it happens the insulin producing cells are totally destroyed forever. Without medicine it would be fatal. They are on insulin lifelong.
Type 2 has two phases. The first phase is peripheral insulin resistance (caused we think by obesity) - the pancreas compensates by producing more insulin initially. The second phase is gradual pancreatic failure which you describe. If you catch T2DM in the first phase - it can be reversed by weight loss, as no damage to the pancreas has occurred yet.
RubikinDSilva Anonymous111
Posted
amkoffee needs to read your reply and perhaps argue those points, it seems you both have conflicting opinions.
I take everyone's point on board.
But who's right and who's wrong here?!
Tumtum1963 RubikinDSilva
Posted
However i think both commentors are right to point out that eating lots of fruit and other natural sugars or even refined sugars doesn’t directly cause or trigger type 2 diabetes (which isn’t autoimmune and is reversible if caught in time)- it’s obesity that does this.
Tumtum1963 RubikinDSilva
Posted
I’m with you in terms of experience and in terms of spending decades undiagnosed. In 2011 I was diagnosed with seronegative RA. Last year, after being undiagnosed when I relocated, I was finally rediagnosed with seronegative Sjögren’s on strength of symptoms and a strongly positive ANA and lip biopsy. My worst symptoms are the neurological ones, which I believe involves fairly similar GI problems to those you describe - plus oesophageal spasms.
I’m far ahead of you in that I’m diagnosed and on immunesuppression treatment. As a seronegative sufferer I’m not at any increased risk of non Hodgkin’s lymphoma - but unfortunately this bonus is mitigated by being at an increased risk of central nervous system involvement.
Already my brain has white matter and my spinal fluid and serum showed paired o bands. I am always tired but rarely sleep the night through and have issues with autonomic dysfunction and numb peripheries and face - which in turn affects my balance.
I don’t altogether blame the medical profession for coming so late to this diagnosis because mine is a much less common presentation. But I do hate the way Sjögren’s is still so under researched, viewed by so many health professionals as relatively benign - “just” dry eyes and mouth - when for me and many others I come across, it’s a multi system autoimmune disease.
To echo others, have you had a full screen of antibodies taken and bloods including inflammatory markers? If so and they are negative for Ro - then like me this means you are less at risk from Lymphoma. If your antibodies have been checked and found negative then perhaps you would consider getting a lip biopsy done?
If they haven’t been checked then this is what I would be demanding - particularly in the light of your family history.
Best of luck in getting clarity. But do keep an open mind because Lupus and Behcets and other forms of Vasculitis can also present with the symptoms you describe - including Sicca Syndrome. And the hereditary aspect doesn’t point necessarily to Sjögren’s - just to autoimmunity.
RubikinDSilva Tumtum1963
Posted
Thanks Tumtum for sharing that wonderful information x
I've got a doctor's appointment coming up and I think what you said will add salt to the mix, maybe they will start taking me seriously, well that's very helpful thanks a mighty bunch - at least the picture is somewhat less foggy now because I otherwise wouldn't have known what else to do to help myself. I'll get my neighbour to screenshot your answer and take it with me to see the doc. I'm a technophobe you see - my phone is a nokia keypad, bricklayer oldschool and simple!!
I forgot to mention my lip biopsy came back negative in June, I was very reluctant to have this evasive and usually unnecessary procedure, but I didn't think I had a choice, now it's left a massive lump of scar tissue and it's still quite tender. So, i've been frantically looking at alternatives, mainly to catch the docs out - it's got me furious.
You're right when you say you're far ahead of me in SS, I'm just trying to get to grips with these things, there are so many different stories on the net forums, some people's blood work and symptoms vary from mine.
Some more blood tests were done, the results were, my vitamin D levels are low, Plasma C Reactive Protein was found, at that point I was prescribed ''colecalciferol'' capsules once a day and another pill called, ''Evacal'' twice a day to suck or chew and the sticker on the box asks me to repeat blood test in 6 months starting this medication and on the same day I was prescribed ''Dermol 500'' lotion to help keep skin sterile, I suppose the lotion counts towards the treatment of hidradenitis suppurativa - so I don't have to keep pestering the doc for more antibiotics or ask to see a doc on duty at the hospital to get a breast cyst drained and dressed before it turns septic, believe me I've lost track how many times I've needed to use the emergency wards. I even had to stay overnight once to have a breast cyst the size of a golf ball surgically removed, which left a 5 inch hole, it took nearly 2 months to heal, and the cyst recurs in the same spot I was operated on, it's recently blown up again - thankfully the nurse at my doctor's practice saved me a trip to the hospital and leaked the puss out putting a gauze over it. I'm always getting stabbing pains in both my breasts, a mammogram 4 years ago didn't reveal anything significant for the doctor to be concerned about.
I'm waiting results from a sleep study, hopefully it doesn't get bad enough that I need to use a breathing device in bed.
I have Viscotears eye lubricant on repeat prescription
Tumtum1963 RubikinDSilva
Posted
All sounds like you’re being wel proactive - that’s all you can do really. I think you could also look into Behcets - phone the Vasculitis UK helpline perhaps because the boils and other stuff makes me think of this rare type of Vasculitis.
If your lip biopsy was negative (sorry it’s caused damage) and you don’t have Ro I’d say that this probably does rule Sjögren’s out - but not in milder form secondary to another rheumatic disease necessarily.
amkoffee RubikinDSilva
Posted
I can totally accept Ben's explanation. It sounds like he knows what he's talking about. I am a pre-diabetic so I am slowly learning some information about type 2 diabetes. However he did teach me something about type 1 diabetes. I really thought it was something that happened in early childhood. I had no idea an adult could be stricken with it. Thank you for the education Ben.