Does anyone else with APS have frequent, every other day or so, pain between shoulder blades? It just feels like someone is squeezing me right in the middle of my back and nothing seems to relieve it. It goes on for hours at a time.
Any thoughts/ideas welcome. Nancy in West Virginia
No idea - it it central, does it feel in your spine? How long has it been going on?
I do know, any pain for us seems worse than any one else.
Hopefully someone else had some thoughts?!
It's almost like there is a clamp on my spine just between my shoulder blades.
I've wondered if this is an odd presentation of angina, which I have, and heart failure. But my GP's gut feeling is that it isn't angina. I'm not so sure, tho. I do have Prinzmetals Angina for 20 years now. But this does seem a little different. Nancy in West Virginia
Thanks so much. Will do.
You will have to persist in getting this sorted, I hope they find out what it is, as this sounds very uncomfortable. Have they given you an MRI or anything yet? MaryF
Hi,
You should have another Doctor than your GP as I know you have a lot of diagnoses and as you say you have had heart-failure. That goes with HS/APS.
Ask for a referral to a heart/lung- clinic that knows HS/APS and also insist first of all on a prompt Scan as the others say above!
Best wishes from Kerstin in Stockholm
Thanks for your replies.
There is no clinic/physician I have found helpful with APS since 1988. I wasn't officially diagnosed until 2009. I have been to John's Hopkins, Cleveland Clinic multiple times, Chicago, Detroit, New York, Cincinnati, Louisville, Lexington Ky and other places. I just have had very bad luck trying to get diagnosed and proper treatment.
I have learned more on this forum in 4 months than I have been able to glean elsewhere in 30 years. At least I know I need an INR of 3-4 now.
The ONLY clinic I would consider is Dr Hughes in London. However, that is difficult because I can't fly due to clotting and I would have to travel by boat. My husband and I did go to Italy in 2012 by boat. I have cousins there.
The last time I flew in 2005 I ended up in hospital 24 hours after I got off plane and my blood oxygen was so low I ended up on supplemental oxygen 24/7 for 18 months. No doctor could tell me why this was but I think I had microvascular clotting from the plane ride even though I was on Coumadin. I was treated by the doctors as if I was doing something wrong for my pulse oxygen levels to be in the 70's and 80's.
At this point all I can do is the best I can. And that involves learning from this forum and taking that knowledge to my GP for review.
Thanks for all your help!
Nancy in West Virginia
We can fly with aps, just need extra coagulation, I was advised not to fly for more than 12 hours in a 24 hour period, to stay on normal meds, but to add clexane (heperin), injection before flight, to wear stockings and to keep moving or exercising during flight. After my strokes I was told no flying, once diagnosed and told the above, my world just opened up!! Ive travelled a lot since!!
Im still a bit concerned about your mid shoulder pain - is it possible to have a scan to rule out any further clots?
I knew you were from USA! We are way behind here! I've been to NYC and they make up their own minds in NYC ! I come from Long Island New York! They disagree here in NYC as u can ask Kelly Girl! Anyone who disagrees with Doc Hughes is a Charleton as far as I'm concerned and on their own Ego and Agenda! You must call Hemotologist and Rheumatologists and ask first b4 u go if they know aid APS? Most don't, but some do and you'll find someone who will help you! Perseverance is the key!
Thank you Holly.
I am due to see both the pulmonologist and cardiologist in the next month. Hopefully, they will have some thoughts in this situation.
I'm just trying to do my due diligence and provide them with any specific thoughts you all may have, in case there is a likely explanation.
My APS started with atypical trigeminal neuralgia--microvascular clotting. The Dean of the West Virginia University Dental School, Dr Jerry Bouquot--trained at Mayo Clinic--had a special interest in patients who had jaw pain of unknown cause. He hounded everyone he knew, got biopsies from 55 of us, and realized he was looking at a clotting issue in biopsies. He then found a clotting specialist in Cincinnati at Jewish Hospital who agreed to see us. Dr Charles Glueck found in 1996 that 78% of us 55 patients had one or more clotting disorders. This was published in the Journal of Maxillofacial Surgery. If you research Dr Glueck, you will see he has published hundreds of articles. Initially we were not tested by Dr Glueck for APS. I don't think he ever tested me for APS. As the years went by a greater percentage of the 55 patients were found to have even more clotting problems. I'm not sure how many, or if any, of these patients had APS. He put me on Coumadin to resolve jaw pain after an unsuccessful trial of heparin. At INR of 2.5, my jaw pain stopped. Therefore, no attempts were made to achieve a higher INR.
On my last conversation with Dr Bouquot he told me that, in his experience, VERY few of us jaw pain patients were able to fly without dire consequences--clotting, even when on low molecular weight heparin, or other medical issues.
Dr Bouquot also told me he had found that jaw pain patients whose neuralgia was controlled by Coumadin or heparin, did not generally do well in cities at high altitudes, like Denver.
These are his observations and I doubt they have ever been published.
I met another lady with jaw pain from San Francisco who took heparin and we have stayed in touch. Several years ago she attempted a short flight and ended up with huge clot even while taking precautions. There may be something a little bit different with APS patients who manifest with jaw pain.
Last fall I attempted to see Dr Glueck again but he retired before I could see him.
So that leaves me with no one I can count on who has a good working knowledge of clotting problems. I will continue to look but I'm no starry-eyed newly diagnosed patient who thinks she will find just the right doctor to treat this horrible disease.
I enjoy everyone's posts and learn so much every day.
Nancy in West Virginia
Yes so sad in USA so bad with APS! I'm disgusted and wud love to come to England!
Hello all!
Saw cardiologist today.
She is concerned that vasculitis is present in aorta causing back pain symptoms. I have long standing history of vasculitis since 2001.
Next week will have TEE ( transesophageal echocardiogram) to determine condition of aorta. Can't have CAT scan with contrast dye, the usual test, because kidney functions lab tests have deteriorated somewhat and they are afraid to give me the dye.
.
I looked up symptoms of aoritis (takiyasu's vasculitis--?spelling) and they SEEM to fit, but who knows.
Should know next Thursday what is going on.
This is a lady cardiologist who really listens to what I say. She discovered the nonischemic heart failure two years ago.
Nancy
Hi, I really hope she understands that we have heart/lung issues with HS/APS. Pulmonary Hypertension (rare symptom but I have got it) and valve-issues go with this illness.
Ask for a Ecocardiography with doppler!
I suppose you are on Warfarin and I wonder if you have a INR-number high enough and test often enough to know that you keep a steady INR.
You need a Specialist where you live. I wonder if there is one near West Virginia?
Kerstin
This cardiologist understands pretty well about APS. She knows I have a low grade pulmonary hypertension. She also knows about the vasculitis and stage 3 kidney failure. I can't have a CAT scan with contrast (dye) due to the kidney failure. I have also been in nonischemic heart failure about 2 years now likely due to APS.
My INR range is 3.0-4.0 thanks to you all. My GP let me increase it 6 weeks ago.
Only have slight mitral valve regurgitation. However, in 2005 my brother who was also in heart failure had a flailed mitral valve. He was flown to Ohio State University in Columbus where valve was repaired. But he proceeded to go into multi organ failure and died 3 months later. My GP, also his GP, had me tell the surgeon to anticoagulate AND give lots of steroids and to call our GP, but the surgeon refused to listen. My GP feels my brother probably also had APS.
It's hard to believe the doctors at the famous institutions here in the US, who actually PUBLISH on APS, don't know how to treat it on a day-to-day basis.
I had a regular echocardiogram with Doppler in March. The TEE (transesophageal echo) will show more.
I have had a new CoaguChek meter about a month now. It has been very accurate so far. I test weekly. We did four double checks (meter and lab) initially. Now every 8 weeks we do a double check to insure accuracy. I may end up testing twice weekly.
My biggest problem with INR is my meds change so frequently. With all the heart failure meds I am on about 15 prescriptions daily, have about 10 as needed meds, and get Privigen every four weeks. Privigen is a blood product containing antibodies of blood donors. My white blood cells don't make antibodies. Unfortunately Privigen can cause kidney damage and clotting in normal people. But, I had kidney damage before starting Privigen. The clotting possibility we just gave to deal with. Before Privigen I had 18 episodes of bronchitis/pneumonia in 36 months. Took 20 rounds of antibiotics. Antibiotics wreak havoc on INR. I am allergic to many antibiotics which compounds the issue. I have now gone 6 months with no infections and NO antibiotics. This is longest I've gone in years without infection.
I am looking for APS specialist locally or no more than 2 hours away. I have my doctors on the lookout also. But, I have not driven in 20 years and a 2 hour trip is a problem. There are days I don't feel well enough to go to a local doctor appointment, let alone a long distance appointment. With so many health problems, I have had 35 doctor's appointments so far this year. Every 4 weeks the Privigen infusion takes 4-5 hours.
Thank you, Kerstin, for your thoughts and concerns. I'm hanging in there the best I can..
Nancy in West Virginia
Yes everyday of my life I have some kind of pain! I get what you say and I get rib pain tremendously! If I turn in bed at night the pain by between my shoulders all the way to my ribs wakes me up and I must adjust my sleeping ways to sleep! I do have RA and Sjogrens and they say with Sjogrens you can get bodyaches! It's almost like I have the flu everyday! There is no painkiller that works for this! Does anything help you! Heating pad helps while on! Soothes me! Also moist heat does help! I take a burning hot towel and wrap it in one of those disposable bed pads! Put it in microwave and I get some relief! Try that see if it helps! I'm sure I need a chest X-ray due to the rib pain! It hurts when I breathe in! I was doing well, then stopped taking care of myself to care for sick husband with bladder cancer! I'm trying to get back on track, but did the damage to myself! Good Luck and get to the bottom of this! Go see someone about Pancreas and please don't wait!!! GODSPEED
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