Update on hospital appointment

Hi all, I have had something of a triple whammy and I am feeling rather fragile.

Firstly, I saw my shoulder surgeon who ordered a CT scan of my neck to investigate why I am in so much pain despite surgery last October. He confirmed what I did not want to hear that I have degeneration of cervical discs C4-C7 which is having a huge impact on my shoulder, and the pain in my shoulder is making the neck worse.

Secondly, I was sent immediately to ultrasound to see what else is happening. The doctor who performed it said that he was not looking at a shoulder that has been operated on. The tendon is thickening and has no more room to move, there is degeneration of the rotator cuff and definite sign of debris and (synovitis / tendonitis) - inflammation causing further pain in the joint. He gave me a cortisone injection under local anaesthetic yet again, in the hope that it will bring some respite before I am offered a nerve block in July.

Thirdly, I went to my GP for the results of the liver scan and blood tests. I now have NAFLD, very raised LDH (495 - up from 271 in February) (reference range 20-220) and slightly elevated ALT 59 (reference range 5-40). Also, my WBC count has just pipped the upper end of normal (ref 0-11) mine being 11.2. Thankfully she allowed me to raise my Thyroxine back up to 100mg from 75, so I hope that this helps at least part of me to have some respite.

Further, as you all know, I have had horrendous abdominal pain and acid reflux for 7 months now. The GP is ordering me an endoscopy as in her own words, "I don't like the sound of those symptoms" and at 53, told me I was at much higher risk (of what she was alluding to I am not sure exactly).

My friends, I am in such a mess and over the weekend developed palpitations so bad that I couldn't sleep for 2 nights - probably stress.

I have now gone on the supply teaching register as I could not manage my regular teaching job. I am so thankful though that I have had no calls this week and have been able to rest, though I can't go on like that for too much longer.

Do you think any of this could be linked to UCTD / MCTD? Any comments on the blood results and synovitis?

always glad of your advice.

BB

3 Replies

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  • BB am vvv much feeling for you....this is A LOT to process, after handling a lot over the years...we share some issues (the neck & shoulder stuff + GI stuff (am not suggesting there is a direct comparison, but I can vvv much relate to what you describe)). I've been dealing with this stuff for 40+ years of adult life...and my version of lupus was infant onset. I'm also interested in figuring out what's linked to my immune dysfunction & what isn't...at the mo, my feeling is that any chronic symptom that's responding to my immune-system treatment plans is probably related to my immune dysfunction primary & secondary conditions...and my specialist lupus nurse seems to feel it's ok to think this way, eg I know my tendon tightening/thickening is lessened when I'm on hydroxy + myco + prep tapers....gotta go now! but just wanted to respond briefly....giving you a big pat on the back (+ a hug! if you're a hugging person)!

  • The only things that I can comment on are the cervcal issues. I found an Alexander teacher who is helping me loosen up and move the neck and shoulders more easily. I have disc problems, have had both shoulders replaced and the left one is out of its socket with increase in osteoarthritis and AVN. I feel much less depressed and move more freely with less pain. Good wishes to you best buddy.

  • Sounds like lupus is having a go at your liver - I seriously think that your diagnosis now can be switched to lupus, given that an organ is now affected. The problem is that very few hepatologists believe in lupus affecting the liver, I'm not sure why. So they're likely to prod you a long time before they accept that it could be due to lupus.

    A rheumatologist should know that, though. And immunosuppressant therapy can help the liver. The use of Azathioprine is interesting in this case - in people without lupus-affected livers, Aza tends to damage the liver but in people with their liver attacked by lupus, it does the reverse.

    All these problems sound to me like your disease isn't controlled properly, you need a tailored treatment plan. Once the lupus is controlled, then the symptoms will slowly improve.

    I'm no doctor, but it is a too much of a coincidence to have so much happening to you without a common cause (in this case an overreacting immune system).

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