Sticky Blood-Hughes Syndrome Support
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Still waiting for scan!

Still waiting for scan!

Hi all, an update on how it's been going................I'm still hanging on....just!

As my last post had last said I went to A+E......& they did no scan to find out why I was in so much pain plus the other stuff??

Then last week....still no better with the 'gall bladder' area.....

Then in my shelter I had to pick a run away 'degu' off the shed floor, I knew she may bite me as thats what they'll do if you try to pick them up & they dont want you to.....but that has never bothered me....................BUT..........when she did she bit my finger & within 10 mins my hand had ballooned up!!! I have never reacted like that to an animal bite???

I left it a day but it got worse & my whole arm felt bruised went to docs.....AGAIN! & he put me on a course of 8 antibiotics a day!!!!

Two days later I felt so much pain in my upper stomack & kept wrenching but wasn't sick :( this started at 1am & by 8am I had yet I phoned docs AGAIN!! He saw me & said I was getting a reaction from the antibiotics!!!!!!!! :o

I was given some anti sickness tabs & eventually managed to drop off to sleep at 1pm until 7pm & by the next morning was a lot better :)

Still not heard any news on the scan...& even doc' cant understand why I'm being kept waiting? & he even phoned up to push it forward??

I thought he would have had enough of me by now :( but he actually phoned me on the evening of coming off the antibiotics to see how I was gettig on & he says he'll phone me tomorrow morning (Mon') to ask again! :)

I think I'll have to be given some other antibiotics as my hand is still very painful & has travelled up my arm?............

Everytime I attempt to have food my 'gall bladder' area is in a lot of cramping pain? :( I just need to know whats going on now..........people have started to notice that I have lost wieght now too..........I wanted to a bit.......but not like this :(

I am popping on here inbetween all these events to try to still be with you all, gentle hugs to you second family xxxx

25 Replies

Hi Sue have missed your blogs sorry that you are having a rough time at the moment, just rest up and get well (or as well as you can) give your body time to heal and try to slow down a bit, rest is important to us love and hugs Alison xxxxx


Hi hun, I have been resting as much as possible...but it hasn't helped :(

I have had a list of priority jobs for about 2 months now whilst this has got worse where things have to be left wether I like it or not!!

I just want to get on now....I'm so tired from it.....

Thanks Alison :) xx


My Dear Friend,

I am so alarmed that you are still so poorly. I can't understand why you haven't been admitted for observation and pain management. It simply isn't good enough.

You have to be so careful with animal bites as you can imagine I've had a few in my time as well. Worse though was a cat scratch (when I was veterinary nursing) it was terrible and got swollen and poisoned very painful. I so hope yours will improve very soon but keep close eye on it won't you?

Jasmine and Jenson have offered to come up and eat the degu for you but I'm sure that's not what you would want. Hortense sends you a big lick far more thoughtful!

I am sending you a big gentle hug and lots of love Sue


Hi Sue, yes I'm keeping an eye on it, still waiting for the doc' to call so I can ask him for a perscription if he could for some antibiotics...I'm ok with!!

As with the pain in hand & arm plus the side / stomach it kept me awake most of the night & I kept waking up hallucinating!! & no I havn't been on the Tramadols!!!!

I think I woke up twice with the chokey thing too.....but my hubby stopped me before it got too bad??

Thank you Jasmine & Jenson.......she said sorry :) x

Thank you I need a wet wipe!! :) x

I am just trying to get on......just tiring now.....speak to you soon hun & thank you xxxx


I hope everything starts to get better soon if the area of the bit is travelling up your arm I expect you no this but you will probably need iv antibiotics please be careful

Karen xx


Ok thank you, I'll mention this to him....if he ever rings!!! x


Hugs, animal bites cam be nasty, so be carefull. I have antiseptic on hand all the time cos of Grumpy cat.

Wiaiting for scans etc is the worse of the worse and the NHS won't hurry them selves. But does sound like your GP is on your side which always helps.





Yes they are good......most of the time :)

I've never had it react like this before tho' from an animal bite....insect bites yes....due to venom etc....



Wow! I'm so sorry for all this. You'll be in my thoughts today. Sorry about the bite. Most sorry. But as an animal lover myself -- thanks for rescuing those critters you can. Have you seen the UTube video of the bear cubs climbing out of the dumpster with the help of human neighbors? (Apparently this happens often and the humans have this rescue maneuver -- lowering a ladder into the dumpster from the back of a pick up truck -- down pat.)

Take care and let us know. Push the medical panic button of you see red streaks going up your arm and into your trunk!


Thank you Gina x


Hi there hope you feel really better soon, and I hope they re check thyoid things as that is very naughty with the gall bladder area, and so many people fail standard blood tests, only to find they have this! As professor Hughes says including his last blog, Hughes, Sjogrens and thyroid problems...often come as a trio. let me know how you are, the hand thing sounds dreadful x Mary F x


ps soon to write a blog about my own adventures over the last month! x


I will hun, they have frequently checked my thyroid.......ok they say? Great isn't it? the extras we have!!! xx


My heart goes out to you. It seems to be one step forward and two backward for you. The nerve of that little critter biting you and after you gave it a nice shed too! Ungrateful thing! Critter bites can be extremely dangerous and carry all sorts of disease. Red streaks up the arm (whatever the cause) are just plain dangerous. You must tell your MD you have a streak rising.. It can cause an infection around the tissues surrounding your heart if not attended to promptly. That is probably why your MD is calling you every night. If it continues to raise you are an emergency case and you need IV antibiotic immediately. I would think so many different antibiotics would give your stomach a horrible run! Particularly if you had previous trouble in that area. Make sure your stomach is coated.(Unless it states otherwise) I take the antibiotics that are hardest for me with an ice cream shake or pudding. It's so thick I don't feel the largest pills and replaces the energy one loses so quickly from not being able to eat. You mentioned loss of weight. Halucinations (not good at all) You have a LIST of serious symptoms. If this doctor can't get a handle on the total problem, I would promptly ask for a second opinion or for a little "pull" from his superior. It sounds to be as though the hospital does not have beds availabIe. It's the old patient shuffle to get the worse in first. I hope you can be taken care of quickly. If I could - I would send you a pair of gloves to handle that brute of a critter in the future. That cuteness does not fool me. Where do you live that this little guy ended up on your doorstep? Just curious as I've never heard of the species.

I wish you strength, peace of mind and many prayers, buddy in APS. My thoughts are with you and I wish you all good things around the corner. Keep the site posted. Just look at all the people who love and care for you. At least you are a rich girl! Rich in good will.


Wow...thank you :)

Yes I take lansoprozole to coat tum,.

Doc' only just called! 6:45pm!!! chemists now shut anyway!......& wants to see me tomorrow at 3:30pm to check if I need antibiotics!!

I just hope I dont get another 'strange' sleep tonight!! :(

No no no all my critters are luvly....she was just startled :( Degus are over sized gerbils with chinchilla faces! & can be very friendly normally......I dont always have this problem with my critters! :)

The side has been cramping all night & day & stopped me eating a saunie earlier......made myself eat some sardines in tomato sauce on a piece of toast!! wether I suffer later or not!.....I have weighed myself for the 1st time today, I dont weigh myself very often at all......not sure if my scales are even working properly going to double check it in town it's saying I've lost around a stone & a 1/2 in the 2 months I've been like this?!

Yep I would have liked to have lost a bit....but not like this!

Thanks again for your kind words :)


Hi you, I have only got my phone to talk on as no computer. I want to say so much more...but can't use these silly buttons so well. Just to say I thinking of you and worried you so unwell. Thoughts and love with you. Jane xxx


Thank you Jane :) thats so sweet.

I know there are quite a few of us down at the mo' with one thing or another.....I know we expect it sometimes but it doesn't mean we want it!!

Feel free to pm me if you want to chat by phone, I dont mind passing my mobile no.on. :)

I'm sure I'll be it's just wind ! ;)



How is the streak up your arm now? When the MD called were you able to assess him of the streak? I know your tummy trouble bothers you more, but the streak may be more dangerous. I'm glad you are not alone and that your husband is there for your symptoms at sleep. Did you try a nice lukewarm bath for the cramping? Are you having the same heat wave we are having this summer? Three degree temperatures with high humidity are my worst days pain-wise and I hope it is bearable where you are. I assume they've ruled out appendicitis and liver problems since he has seen you before. Well, I'm glad you're seeing the MD tomorrow at least.

Rest well tonight, and know my thoughts and prayers are with you.


Thank you :)

It was Gina that mentioned the red streaks?! I am having pain in my hand & arm & into shoulder area from streaks as of yet...but you all got me looking for them now!!

Weather was nice last week but keeps raining now...ducks don't mind it tho'!!

They've tested for some stuff & my tum & side/have been pressed about 50 times but still confused faces? Which is why I'm so confused that they havn't hurried scan through?at least then I can rule stuff out that's going around my head if all is good?!at the end of this I may still be left with yet another ? Over my head...but at least I will know?

I'm relieved I'm seeing him tomorrow but starting to lack in faith again, I'm on hols next week & I would like to go knowing I'm ok & not have my family worry over me :( (I go every year with Mum & 2 brothers to a local relaxation hotel (Warners!)But we love it!) But already they're fretting!

I just want stuff to be done now that needs to be done?!

Thank you all my second family xx


Sorry Crew, if my over abundance of septic caution and mentioning possibility of red streaks was processed from my fears into some readers' reality. . And I pray that's right where they will stay: in my worried imagination.

Suzy, do let us know how tomorrow goes, if you have the time and energy. Sleep tight, and don't let the degus bite!


Reply degus got me in the night!!!!! :)

I slept a little better but not great.

Went antibiotics? he is sending me for more urine & blood tests......& he says it will show if there is any infection there..............but I will have to wait til at least a week on Monday for the results? :(

I give up...there nothing more I can do.....I'm just going to be careful & try to take it easy, the thing is I'm away with Mum & Brothers from Monday onwards...& I wanted to be sorted out & questions answered before then?!......oh well.

Hugs to you all xx


I JUST KNEW just called......he has asked them if they can push it forward as an emergency............& they've replied they have extra staff in NEXT WEEK! so they can do it then if I want?!! when I told doc' I'm away...he replied....why didn't you tell me?!! I replied I DID!!!!!

I just knew it :( he may phone me back later hopefully with a solution :(


Well, as much as you need the holiday (which I hope is "hols") you need the sonogram or imaging more. It would be nice if he could change it. But I'd put the holiday on hold cause you really haven't been well. It wouldn't do to be very far away from MD's treating you now. What if this persists? Take the earliest imaging appointment you can get, Stating you are an emergency and hae to wait days is laughable to me. Here if you are deemed an emergency you go directly to the emergency room to the front of the line! You wait for interpretation immediately. Are you allowed to request a senior MD? My General Practitioner is the coordinator of my case, but it's my rheumatologist who usually has the answers. She finally tested for APS last year when she put together a total medical history from birth and we realized I was ALWAYS sickly. From birth on. Tutored for 2,4 and 9,10,11 and 12 grades. Well, you don't need my whole history here. This is the link to the American APS Foundation, Inc. It, too, can be very informatiive and a great resource for other information links. Knowledge is power. Go armed!

Please keep the site posted. I'm glad you have at least been deamed an "emergency" to them. I am also so very sorry I misinterpreted Gini. I've been to "streak up the arm" land and it's not a good place to be. I'm glad you don't have that. Didn't mean to confuse.

Please, Suzypaws, take the first imaging appointment. The answers will give you more peace than a holiday. Good sleeps in the future. Happy dreams come true.


I know it will, but I cant re book the hols.......I was going to tell him that hubby would come & get me & take me for it & then take me back to the hols even tho' this would obviously inconvienience him :( ......but doc' said he will just re do it as it wasn't fully confirmed they could do it next week anyway?! & put the phone down! I am just as confused as the next person with all this......

I'm just going to have to wait until next possible appointment confirmation & just go for matter when it is, I'm hoping he'll get back to me over the next few days?



I bet that hubby would WANT to be inconvenienced! If he's a good hubby he is as worried about you as you are. Really, call that MD back. Tell him you're sorry you ran into a bit of confusion during your last conversation with him and you would like to clarify if your ARE or ARE NOT an emergency. I can tell you from managing a 15 physician office that if the patient doesn't take the first emergency appointment offered for a reason like "I'm on a vacation I'm not willing to rearrange", there are just too many patients waiting for that emergency appointment who would grab it in a flash if it were at midnight. They don't argue, they don't tell you. End of the emergency line for you! And they begin again. Don't be passive and HOPE he will get back to you in the next few days. Call him tomorrow, before the weekend, and take that appointment. Your hubby will be more inconvenienced if this "emergency" appointment is too late. He would be more inconvenienced if something untoward happened during vacation and he was not with you. Not to be scary or anything. Just practical. Do your best to get that darn appointment back! I say that with smiles, hugs and a prayer that you take what I said to heart!


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