Sticky Blood-Hughes Syndrome Support
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Update and some Questions!

Hi I hope and pray Y'all are doing well! My throat specialist kind of dismissed me! He won't operate and there is something on my vocal cords! My throat still swollen and wen I can't breathe these Godawful sound come out of my throat like the death rattle, especially when sleeping! I went away with my May Sisters on Memorial Day Weekend, we were sleeping in one room and she jumped outa bed and thought I died! We laughed alit! Good for the soul! I called my ENT and asked her what shud I do wen my throat closes cuz the asthma inhaler does nothing! She told me to go to Pulmanologist! Nah waste of time! I think I need to go to my tummy doc and he'll do endoscopy and c whats really there! CAT SCAN W/O contrast is useless! I'm allergic as is my sister!!! My sis nanny 23 probably posted this question, does stomach issues have anything to do with APS! Does anyone have tummy issues and r they related in any way to APS? I know You Brits recently had a holiday~~ I think Bankers Day or something! I hope y'all had a good day off as I did with my May Sisters! We're all Taurus and born a few days apart! I havnt had laughs like that in a very long time! President Kennedy Put a man on the moon, President Obama put a man in the ladies bathroom!!! Lol... Just a wee bit of humor for this crazy disease we have! I send my love to Kerstin from Stockholm, Mary, Dave and last , but certainly not least Notsofab! Also my sis has Neuropathy in her leg, but no diabetes, does that have to do with APS??? Also she always forgets to say she has APS! It's a defense mechanism cuz she hates to admit it! I need to go with her to her doc so I cud tell him! Her answer was why shud I tell him, he won't know about it anyway! I wishe I cud create a coffee group here on Long Island, N. York!!! I have been suffering from migraines every day now! I woke up at 3am and made my hubby make me coffe and had no choice but to take ibuprofen! Only thing that takes the sharpness away and I go around all day with the migraine trying to come out! Like right now at 2am and can't sleep! I am a terrible sleeper for most of my life! Terrible sleeping issues! I only need 4 straight hours, but love when I get 5-7 on rare occasions! Anyone with sleeping issues??? Thx for tolerating me and my silly issues!!! GODSPEED

5 Replies

OMG! Bankers Day!!! My sides are splitting laughing! I will tell you something there is no way on this planet that the Bankers are ever going to get a days vacation named after them!!!

Im going to try something new on here to answer your questions in your own post...I will see if it works or not!

Decided not to... ok, tummy issues can be related to APS but it depends on the type of tummy issues. Sometimes if you get cramps about 30-45 minutes after eating this can be when the blood supply is having an issue with the extra needs being placed on it digesting food. There are other "tummy" issues but it would depend very much on symptoms and where in the stomach area i.e. pancreas, liver, gall bladder etc. I would not go looking if I were you!

You can have idiopathic neuropathy, that is no known cause. However if I was someone being told that I would have my B12 checked out.


Lol... Love ur sayings! You're funny! Yes I always wondered why I get bad cramps after eating! I'm just worried about my sister! She's not taking this disease seriously! She needs to face things and NOT FORGET 2 tell other docs she has APS!!! It's like she turns a deaf ear to it all!!! I will tell her to have her B12 checked out! Thank you Notsofab, YOU ARE FABULOUS!!! Godspeed!!!

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I've had throat issues lately-they were coming and going until it was hard to swallow soft foods. Settled down and then I'm finding I'm clearing my throat all the time. I had gastroscopy not long ago so I figured it was all in my head and I'd seen enough doctors for a while!

Went to GP for some repeat prescriptions and he asked me if I had a sore throat or cough. Had a quick look and sent me for a Barium swallow. Seems I have something called Cricopharyngeal dysfunction. There's a muscle in your throat that opens briefly when you eat to allow food go down. This can get constricted so it only partially opens and you end up with tiny bitsfood stuck above it (hence the throat clearing. Eventually will probably need surgery to cut and release it. Could be worth while getting this done to rule it out?

I think if I was a horse I would have been shot by now!!

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Thank you so much for ur reply! I sure do hope you can feel better soon! Do I have Sjogrens also! I must go to tummy doctor to have endoscopy after my 1000 mile road trip to Nashville, Tennessee! I just want to take my poor hubby on this road trip b4 he looses all memory! His ALZHEIMERS is progressing now at a very fast rate!!! I'm frightened of the future with him! He's been a great hubby!!! Godspeed


I just had a big work up to see if GERD was causing shortness of breath. But no. You do need a scan. I don't want to scare you but a good friend of mine just died of throat cancer. It took them a long time to figure it out.


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