Had 2 blood clots after a surgery and one went to my right lung one to my brain. Had a stroke that took out left occipital lobe region. Then they did test and I have APS. I have since developed rosacea on my cheeks, not terrible but there, and my teeth are cracking! Im just curious if this is normal...I'm no longer on blood thinners just take an aspirin everyday. I did xarelto for 6 months after stroke. I'm only 36 
I don't want red cheeks and false teeth yet! I'm using Soolanta from derm for cheeks works well...teeth are costing me $$$! I'm blessed to make it through alive though! So from one sticky blood to another...anyone else deal with this? Also my hands and feet tingle about 5-6 times a day...last for a while even while moving around....I know its easy with a syndrome to blame everything on it but who knows!
Rosacea, cracking teeth, and tingling... - Hughes Syndrome A...
Rosacea, cracking teeth, and tingling feet! :-/
Hi there Kmobi Do you have a APS specialist you now see regularly. Did they recommend you only take aspirin
Hi and welcome, where are you located? It is useful for us and others on here to know, as probably you will need a medical consultant with more knowledge of Hughes Syndrome/APS.
I am surprised you are not on any anticoagulation. Regarding your other symptoms, it is common with Hughes Syndrome/APS, to also develop a Thyroid condition, unfortunately testing can be poor, so best to be more detailed with the testing rather than just the standard TSH test. The trio of disease often written about by Professor Hughes himself is Hughes Syndrome/APS, Sjogrens and a Thyroid problem. I would also get your B12, D and Iron tested, as if any of these are low you will feel unwell. Rosacea and other skin conditions are common with a thyroid disorder. MaryF
Hi. I also have had Rosacea for 20 years. It has been quiet for many years now. I no longer use the ointment from my dermatologist. I have even forgotten the name of the ointment as it has been so long since I used it. So I guess rosacea
can act up and then disappear for years at a time.
I also have many dental problems with APS. So far I've had 3 molars crack. Nothing showed on X-ray. During root canal the cracks were discovered. I have 3 fixed bridges due to losing those teeth.
I attempted a dental implant last time to replace molar rather than the bridge.
Implant was BIG MISTAKE. My jaw never healed around implant and I had to have it removed several years after it was implanted. I have a history of microvascular clotting in my jawbone so the bone never healed completely around implant even with 2 bone grafts.
Good luck.
Nancy in West Virginia
I'm having trouble with one molar now. Trouble happened just as APS stormed my system with first clot. Cracked a molar, needed a root canal- failed instantly- in three days. So we just threw a porcelains cwown on it temporarily. I'm needing an implant now.im limping on a temp clown that's sensitive. We know we are on bowwowed time but the APS anti body test came back positive, one week later I got the DVT...
I asked dentist if it was possible it was APS- she said it was likely not because she sees evidence of me grinding teeth in my sleep.
But because the root canal failed instantly- it was strange- and not a bad crack- the tooth was not in bad shape at all- not dark, just starting to be heat sensitive.
How did you confirm the micro vascular clotting to jawbone?
I was told my problem with trigeminal neuralgia was grinding my teeth or TMJ which it was not.
I luckily was referred to the oral pathologist/ dentist, formerly dean of WVU dental Dental School, Dr Jerry Bouquot. He trained at Mayo Clinic. He is semiretired now, I think. He is still in Morgantown WV. For a short time he was in Huston, Texas. I had a biopsy done by oral surgeon which was read by Dr Bouquot. He was first dr in US to figure out that many of us jaw pain patients had an ischemia problem due to ?? He suspected the problem was due to clotting/ischemia. He found Dr Chas Clueck at Jewish Hospital in Cincinnati, a clotting factor specialist, who tested 55 of us jaw pain patients with abnormal jaw biopsy. Dr glueck, now retired, found in 1996 that 78% of my group of 55 patients had one or more clotting disorders resulting in bone ischemia--and not just in jawbone. Hip joints and other bones. This was published in Journal of Maxilofacial Surgery in 1996.
And the clotting problems Dr glueck found were not just APS, but MANY other clotting problems. In fact, even tho I tested positive for APS in 1991, I never tested positive for anticardiolipin antibodies with dr glueck. With dr glueck I tested positive for many other clotting problems. For this reason he started me on Coumadin in 1996. This STOPPED the jaw pain and the TIA's.
If the 55 of us were tested now in 2017 the 78% would likely be higher as more clotting tests have been developed in the last 20 years.
Many patients with this jaw pain due to ischemic bone committed suicide due to unrelenting pain. Dr Bouquot did autopsies on at least one of these patients and found abnormal bone cavities in the bone which he called NICO--neuralgia inducing cavitational osteonecrosis. I think he can look at some jaw X-rays, if they are good quality, and determine if there is 'abnormal trabecular bone pattern' which likely indicates ischemic jawbone. Otherwise, he needs biopsy bone sample.
You can google both Bouquot and Glueck and find the original 1996 study. Dr Glueck has published more than 700 articles on this and other topics. But, you can't get in touch with dr glueck. He is retired.
However, you may be able to get in touch with Dr Bouquot in Morgantown.
MY DENTIST led to my diagnosis of APS and other clotting problems AND likely saved my life. Thank God for smart dentists.
Nancy in West Virginia
That is quite an unusual route to an APS diagnosis. I. Do not angry TN or jaw bone pain. ( than goodness. I have two friend who suffer TN and so I've learned about it. One recently had gamma knife surgery, but pain sadly returned. His is due to MS. My other friends is due to car accident facial lasceratiin. Both are on an anticonvulsant to slow nerve firing.)
My dentist just remodeled her office ( actually mine she leases from my building- we re did it) and has brand new imaging equipment. It's almost MRI quality! )
She is meticulous and will look into this carefully. I will pass this info on to her. It's very specific and helpful.
Her fiancée is my oral surgeon. They are very nervous with me...
is your TN now under control?
Very good control of TGN with INR of 2-3. But it still fires a few times a month when triggered by eating or drinking. But the CONSTANT blow torch pain is gone. I mean 24/7 blow torch pain. I'm not sure how I survived it for 8 years.
Out of desperation in 1991 I had a trigeminal nerve ablation in Richmond Virginia after failure on multiple anticonvulsants (tegretol, valproic acid, neurontin, antidepressants and others I can't remember). That is close to brain surgery. No pain relief from this.
Then in 1993 I had a craniotomy to decompress fifth cranial nerve in Presbyterian hospital in Pittsburg. That is BRAIN SURGERY. I was desperate. NO pain pill touched the pain. That surgery total failure to control pain. A major brain surgery. I felt like such a fool. I was accused of being an attention seeker and malingerer.
I also have TMJ and have had since my early 20's. To me, that was nothing compared to trigeminal neuralgia.
Initially the doctors thought I had MS since TGN is so common in MS. I do have many MS symptoms. Dr Koski at Johns Hopkins checked my antimyelin antibodies which were elevated in the mid 1990's. Also have L'hermittents (?) sign and other symptoms.
The bad thing tho is that my target INR being so low until this year has contributed to the heart failure and stage 3 kidney failure.
I figured out in about 2007 that I felt better with higher INR and convinced my GP to increase to 2.5-3.5. Just this year I got it increased to 3-4 since joining this forum.
Thank God for you all!
Nancy
I'm so very sorry Nancy. Thank you for helping me. I wish there was more I could do to help you!
Registered dietitians are so important. I may start picking your brain on raw vs cooked greens... And how the cooking process alters the body's ability to absorb the K.
( especially with regards to spinach)
I'll ask on another post or pm you as not to overwhelm you.
ND: Very fortunate for you to have such a remarkable dentist
I know. My dentist sent me to endodontist who figured out to send me to oral pathologist in Morgantown. But remember, it took 8 years to figure out I needed Coumadin. My initial target INR was 2-3 for 10 years. We figured out a piece of the puzzle and are still figuring it out. Nancy
Please remember we don't BLEED, we CLOT. We will die from clotting before we bleed to death! I have similar situation of a stroke wasn't properly coagulated and had another stroke. Please. Don't, let them, let this happen to you. Best of intentions, Cindy in NJ
❤️
Oh no its ok just replying to your We don't bleed we clot! Lol
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