Newby - Desparately Seeking Advice or any Level of Hope please....

Hi I am one of the patients who nobody wants to help, I'm in between departments all saying its the other person's remit! In fairness to gastroenterology they did colonoscopy 2 years ago & recent endoscopy just reactive gastritis but no IBD. I already had full review from Dpt Tropical Disease & Infection who at the last stretch diagnosed Obstructive Sleep Apnoea (now on treatment Cpap). I was told it was highly unlikely also, so you can understand my distrust of professional opinion of those who don't follow criteria. Luckily this Dr used criteria. The suspicion of cfs/me was dropped.

After 6months gradual improvement went to gradual decline with clear episodes of new inflammatory signs.

Red painful joint swelling, random migratory. Knees knuckles big toe joint. Also hot burning red painful soft tissue swelling around joints. Red sore eyes, dry eyes now gritty, severe dry mouth at times. Episodes of painful but mild irisitis (unconfirmed as eye emergency closes at 4pm) photos of redness and excruciating eye pain on any light. Esr high in connection with joint swellings. Photos of joint swellings also. I've suffered oral ulcers for years but episodes coinsided with joints and eyes and pustule outbreaks. I had adult onset pustules at a time when I suffered from mild fatigue and terrible severe mood swings every 30 to 60min in most afternoons. I also got sores around genitals never looked just felt sore. Back then I never bothered doctors unless really needed to. I never had this type acne as teenager. Neck; chest; back; bum; shoulders & now arms!

My severe fatigue started 9 years ago but took on a new severity after c section 3.5years ago. Pain has become massive issue last 3.5years. Diagnosed prior to OSA treatment as fibromyalgia with polyarthralgia; migraine which is now chronic daily headache. Balance issues brain fog; profuse sweating; chronic low grade fever. Now 14. Episodes of ulcers in 9 months.

Sorry to go on, just trying get you understand. Chronic palpitations; nasal drip; ENT thinks chronic tonsillitis., currently under control mostly. Mri was clear. Get infection after infection became severe lymphopenia 0.3. Iron deficiency despite no periods due to coil. Believe bowel blood loss. Had told it was Ibs. Loss appetite, nausea, binge eating; Bloods since new symptoms indicate possible autoimmune.

Problem is rheumy is Horrid, not interested in getting bottom of anything and just wants close my file. Thinks I'm not ill enough. Tells me I have no severe life threatening illness! Had low levels lupus anticoagulant, slight elevated drvvt after ibuprofen so may have been higher. Strong history on both sides clotting problem with heart attacks & strokes early onset leading death & disability. He wouldn't even diagnose costochondritis my gp had to. When I asked about rib pain he shrugged! When I asked comment he said we'll yeah all muscular rib pain is costochondritis!! Doesn't look at numerous rashes properly on photos Denying they purpura saying they are raised when clearly they not raised!

Sorry point I'm trying to make is he won't apply criteria. In spite of all evidence denies anything rheumatic wrong with me! Even Immunoglobulin a elevated. My gp given his advice won't refer me to specialist as too much money! Even oral specialist who was lovely said not behcets it's rare. Without genital ulcer you don't have it. Cfs/me push me to get diagnosis as my symptoms suggest inflammation.

Im in dire situation no real support. Husband works full time & looks after toddler, struggling. All family at big distance. Not many friends left & often no energy to see the odd ones left. Gp works with me but seems trust rheumy opinion over mine. I can't live in this pain. Rheumy letters are inaccurate and gp refusing my corrections. Rheumy won't make corrections that I require despite evidence that its wrong. He only added the rest of medication and diagnosis he missed. He lies denied ulcers were a problem in his letters! Now says I had one genital sore with out referring to my history of them at all.

To be honest I don't know how much more I can take. I'm never seeing him again. If I confide in husband he gets depressed which then upsets me. I so isolated. Got pip Tribunal coming up & social assessment result is they cant get me help with Joseph either as I don't qualify I have a car. I don't have full access & regardless of car still in significant pain. & often too ill to drive him to nursery.

Im so sorry to have gone on so long. I'm just despairing it sometimes feels be much better if I didn't suffer. A life of pain, burdening my family and all alone with no help just doesn't feel like a life I want. I know we all suffer and I'm not doing anything about how I feel but I just pray the suffering will end. It's constant pain.

16 Replies

  • I dont mean to be rude, but you might have got the wrong forum, as this is a pregnancy forum

  • Sorry didn't realise! I get brain fog so don't often know what I'm doing! Sorry x

  • I'm so sorry to hear of your situation it's sounds very tricky, however this is a pregnancy forum so not sure if you may also want to re-post in another area so your post can be seen by others in a more similar situation. Have you asked your gp to refer you to an alternate consultant or someone more senior within the department? You are always entitled to a second opinion. Wish you all the best, hope you get the support you need x

  • Thankyou hun, Im embarrassed got wrong forum, beginners mistake! Lol & brain fog. I managed speak to GP after post think she try get me 2nd opinion. Thanks again xxx

  • Aw bless you with all you have goin on anyone can forgive a little confusion. I'm not medical but work in a hospital so know how hard it can be getting different departments to communicate. Hope you get a second opinion and get on the road to recovery. X

  • Hi sweet. As I was reading your post I thought this sounds somewhat familiar.

    The fact that you test positive for lupus anticoagulant and drvvt is strongly suggestive of APS or Hughes syndrome. Has a dr discussed this with you? It can also be linked with lupus and sneddons (dry eyes and mouth)

    There is another forum on here which is fantastic and they have loads of experience and advise:

    Sticky blood-Hughes

    Hughes or APS needs to be looked at by a specialist who understands the condition. The forum can also give you a list of specialists in your area.

    Good luck in getting to the bottom of this, I know it can be a long road.

  • Thankyou for your kind response, when you say familiar, is this something that affects you? Sorry be nosey guess am just curious if this all sounds typical of Hughes? I will look into this sticky blood. I thought it might be possibility but no doctor mentioned this. The rheumy or gp never suggested. Thankyou so much. It's heartwarming to know people who you don't know care enough to read & help xxxxx

  • Hia, I only test mildly positive for lupus anticoagulant, my main symptom is that it causes me to miscarriage. I had two miscarriages before I pushed for tests and was found to have a prolonged clotting time (aptt) drs wanted to leave it there and keep an eye on me when I was pregnant next. I had done my research so point blank asked to be tested for lupus anticoagulant - it came back positive. My gp was then fully on board - usually they won't look into miscarriages until you've had 3. I was then referred to a haematologist (did you know you can tell your Dr which hospital and consultant you want to be referred to) at guys and the whole process of tests started all over again, which was killing me as I just wanted to start trying for a baby again. And my consultant can be very cold and matter of fact.

    In terms of my other symptoms:

    -Short term memory issues

    -Livedo reticularis

    I also have raynauds which is linked this APS or Hughes syndrome.

    Have a look at this link and see if you can match up any symptoms. From what I recall you had quite a few!

  • Hughes syndrome is an autoimmune problem. Basically it causes your blood to clot too much and can cause a whole array of problems. From what I can remember of your post you have had or currently have:

    - fatigue

    - headaches

    - balance issues

    - joint pain

    - gritty and dry eyes (sneddons also associated with aps)

    and the fact that your dvrtt and lupus anticoagulant are positive is highly suggestive.

    Have you ever had a blood clot like a DVT or PE or Stoke like symptoms?

    I am not the best person to speak to as I myself have not had a clot but your symptoms are so suggestive plus the blood tests I think your consultant needs to be shot! Lol if it were that easy.

    Have a look at the specialist link below and ask your Dr to refer you!

    Hughes is not very well known of. So you really need a consultant who is familiar with it. And maybe you can start getting effective treatment and start feeling a bit better.

    Have a look at sticky blood. Honestly I am a newbie myself but they are very helpful. And I'm sure many will be able to relate to you.

    Chin up xx

  • Thank you so much, I have possibly had TIA x2 at least or more EG speaking first half of words correctly & the last half of words was gobbledegook. Called 111 must been other symptoms I think they thought same asked me raise my arms which I could. Then I didn't know what a cupboard shelf was called! I wasn't searching for the word it's like I was never told what it was called but I knew I ought to know! Forgetting I'd met waiter 5min previous.

    I will look at link and take info to GP. Yes he should not be a Dr! Xxx

  • That's shocking that they want you to. Suffer 3 miscarriages especially when some indicators! These people are cold and callous. Was it a man Dr? I doubt women Dr be like that. X

  • Please, Don't be so sexist, must have been a man! It's just as bad as saying a woman's place is in the kitchen.

  • Hi I never meant be sexist, you're right I guess I was. it's just I've seen countless Dr's over the years and in my experience 9 out of 10 men have been very insensitive or cold. And 9 out 10 women have been considerate or kind. Granted overall I have seen more men. I'm not a sexist kind of person but can see how it can be taken. Apologies if offended anyone. I must hasten to add my male gynecologist was the most kind out of the lot of them x

  • I must admit I don't think a women's place is in the kitchen either . I simply did not explain myself very well. It appeared I was wrong in doubting women of being so cold. Indeed some women Dr do surprise me lately. I simply meant practically speaking, a lady Dr could physically be in the same position and so could relate in a way a man could not.

  • After my first miscarriage I was looking for a bit of reassurance from a female Dr. Her words of comfort were miscarriages are very common even if you had another one we wouldn't do anything until you've had three! Very supportive ey!

    TIAs are also a symptom. You'll be surprised how many people go to a&e because of tia or stroke symptoms and are sent home with out treatment. Usually a few months later their consultant agrees they had a tia/stroke. That's why correct diagnosis is so important- they take you more seriously.

  • It's quite scarey what some Dr's consider to be helpful. I'm so sorry you had to deal with that. It's just awful. Xxxx

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