I am a 31-year-old female high school teacher on the Island of Maui in Hawaii. In the past ten months I have developed serious symptoms that have baffled several specialists, including my neurologist, who is currently working me up for MS.
My degenerating condition (which includes loss of feeling in my right foot and stiffness/numbness in my hands) confused me as well…I have no history of significant health problems, other than 3 unexplained miscarriages at different stages and teenage migraines, which were totally absent in my 20s but have now returned.
Over the past year, the lymph nodes in my neck have swelled and remained- two are around 3 cm, and an FNA biopsy showed no evidence of malignancy; merely “inflammation.” I’ve also had abdominal and pelvic ultrasounds, (which only showed a small hemangioma in my liver) a colonoscopy (because of an episode of bloody diarrhea,) MRIs and CT scans of my head, and an ultrasound of my thyroid…nothing alarming…
So-I relaxed a bit even though my right side inguinal nodes also remain enlarged and painful.
However, This summer I began experiencing extreme fatigue and serious pain once the school year began. Then my joints started popping…at first this was comical; my students started calling me “Ms. Snap Crackle Pop.”
It began to worry me though as my discomfort and fatigue increased. I have frequent UTIs and irregular, clotty periods.
Then my vision started blurring- I’d always had excellent eyesight, but now have several “floaters” in my right eye which seem to come and go. The final straw was when I realized how difficult typing (essential to my job) had begun due to the pain and stiffness in my hands.
I feel almost intoxicatingly unfocused at times and in September, I asked my psychiatrist to increase the stimulant I take for ADD, and voiced my frustration to him about my family doctor, who refused to refer me to a neurologist and (still) seems to think I am merely suffering from panic and anxiety-
My psychiatrist, who knows me well became concerned and referred me to the only neurologist on Maui- who is now in the process of the workup for MS. The only clinical finding he’s seen is an absent Babinski reflex in my feet.
However, in the past 2 months my veins have swelled and I’ve noticed a purple and white fatty hamburger looking discoloration of my skin- my right foot (the numb one) is constantly purple and cold, although they both cause me significant pain, as do my arms- but the worst of it is in my groin down the leg, and left side of my neck, where one vein is usually visible. I have red bumps under my skin, over pale areas, and very visible veins and capillaries.
Anyway- a few weeks ago I did what I promised I wouldn’t and googled my symptoms….
I had never heard of Hughes Disease or APS, but decided to take an extra strength Bayer aspirin tablet. Within an hour, I began to feel better and the circulation in my foot abated a bit. I took another and by lunch I felt as if someone had performed an exorcism- the pain was gone- I could feel my foot and the purplish-white rash was literally disappearing. I took 2 more that night and several the next day- I could not believe how much better I felt, and even my vision cleared up.
Excited, I went to my family doctor, and told her about the Hughes syndrome, my history of miscarriage, and the seeming disappearance of my symptoms with the aspirin. She told me she’d never heard of it (neither has my ENT) and refused to send me to a hematologist, because my CBC and SED rate were fine a month before.
I begged to see a rheumatologist, citing the lingering swollen nodes, and I have an appointment on the 11th, thank God.
My only concern is that now I feel as if I should stop or wane the aspirin treatment now so my visible symptoms return in order to show the rheumatologist. Otherwise I’m afraid he won’t take me seriously.
I’m very worried, however, because I tried this yesterday and my symptoms flared like a banshee- the vision problems, confusion, and severe pain, especially in my right leg and neck- were back with a vengeance.
Does anyone know of a good doctor in Hawaii that might be aware of this syndrome? I also have family in Rochester, Maryland, and Washington DC- who have all offered to take me to appointments there.
I am not overweight and appear “well” to doctors….I never used to ruminate about my health; now I’m worried about a stroke or DVT.
I am desperate at this juncture- I’m unable to work, and spend hours in bed. I used to run and swim several miles each week, but now cannot manage to walk my dogs for more than five minutes- My principal and fellow teachers have been incredible supportive and even donated sick days, but I miss my students, and my former life.
My apologies for the very very long post…It’s my first on any blog or health board.
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jojohorn2
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I do not know of any doctors in Hawaii, but I just wanted to post and let you know that you are not alone. I was also a high school teacher (English) and had been very active and healthy, raising my family and teaching for about 15 years when it hit me. My symptoms were very similar to yours, except I never had any miscarriages. However, I declined very quickly and was unable to teach within a month or so of the school year starting. It took two years after that to get a diagnosis. I was also worked up for MS, and it was the MS doctor who found that I had APS. I had already seen a rheumatologist to rule out Lupus and rheumatoid arthritis, was treated for fungal infections, fatigue, sleep problems, etc. In the end, the MS doctor ordered an MRI and saw a few pinpoint lesions on my frontal lobe. This scar tissue made him consider vasculitis and APS. A few blood tests later, I was diagnosed. It was May of this year when I was finally diagnosed and started on Warfarin, but I had to go all the way to UCSF Medical Center to an MS specialist to get that diagnosis.
My suggestion is that if you have family in Maryland and Washington DC, research doctors in those areas who are familiar with APLS and go see them. This illness is worth traveling for. Proper treatment is essential.
In the two years it took to get a diagnosis and proper treatment, I had multiple TIA's which caused scarring on my frontal lobe. I will never be the same. Where I was intellectually capable of operating at 100% before, I am only capable of operating at about 70% now. I will never teach in a classroom again, and I believe delayed treatment is the reason. Please do
not let doctors put you off. Fight for a doctor who knows about APLS and insist that you be tested (and treated if that IS the diagnosis).
It sounds like you have had quite an unsettling time with all those symptoms and no support. Sadly so many of us have gone through similar dismissive doctors trying to get a diagnosis. Hopefully someone here will know of a suitable dr either near you or in the US. Otherwise is it possible to get to the UK as their are some great drs there that know and understand APLS.
I'm in Australia and it took over 20 years to get a diagnosis and even so not much understanding or support where I am.
I'm sure you will get lots of support from those here and hopefully some ideas on what options to try next.
I'm just a little worried at the amount of aspirin you are taking though. I know its tempting to keep taking it when it is having such a positive influence on your symptoms right now. The usual dose to take for blood clotting issues is 75mg or 100mg once or twice daily and a full strength aspirin is over 300mg. My dr has said that taking more doesn't really help and can work in a negative way causing a rebound effect plus it is not a good thing to take too much of.
I'm glad you have an appointment so soon and hopefully you can get some help and a plan of action ...fingers and toes crossed for you and let us know how it goes.
Hi there and welcome, you are on the right track, we have many members from the USA on here and over the next few hours and days, many of these members will come up with reliable names for you with regard to contact. Also great that your family are ready to help you also. Keep us posted with your progress, and we look forward to hearing from you again. Mary F x
Hi Jojo - I'm in the UK so can't help with a doctor, but just wanted to let you know that many of us on here and all over the world have to go through this horrendous battle to get a diagnosis. It took two and a half years for me and that was two years after a stroke caused by a clot in spite of a history of DVTs. The doctors are all too ready to think we depressed, prone to panic attacks or just downright hypochondriacs rather than listening to our suspicions of APS, so don't feel you are alone. It doesn't help you get diagnosed, but it should stop you doubting yourself - feel confident that you know your body and do not be talked out of your belief that it is APS. It's sad that we all have to face this battle while we are feeling so very ill, but you will get there, I'm sure. Take care, thinking of you, Larraine x
Hi Jo Welcome to our group-- it sounds to me anyway , that you most likely are going to test out positive. there are great people here that will able to steer you in the right direction. {please don't not mind my spelling and typing ability} being a teacher and all HA.there is some good info on here that you can take to Doc.s with you . don't let them bully you . most find it a battle to get the doc's to listen. alot of your symtoms are shared by many of us. this disorder although we share many of the same issues, has to be treated on an indirvidual basis. stick to your guns-learn as much as you can to help you with your Doc,s - some of the dc's that i have run into just don't get it. don''t let that bother you . stay positive,laughter is great medicine.it does help. i'm here in the states -- N.H. .it's scarey . if you need us we are here. i'm NOT know for my tact with some of these Doc,s but i get things done. some times the hard nose effect is what it takes. - -jet
Hi Jojo: If I were in a position to have to fly to get a diagnosis I would go straight to the guy who really knows, Prof. Hughes. I agree with iwantsimple. Decline can be fast and furious. I would not take aspirin now, but I would take photos of the flare-up so that those could be e-mailed to him in advance and tell him you took the photos so that he could see but that you would like to begin aspirin therapy as soon as he feels it is safe. Frankly, to my ear, you sound too serious for aspirin therapy already and seem to be declining quickly. By sending the photos coupled with your remoteness, you may get a sooner appointment time. I would take action quickly. If you end up not being able to fly for a diagnosis, the administrators on this site have much information that you can print and bring with you to your doctors there. Also, the American Medical Association should be able to refer you to a rheumatologist on the island.
Having cataract trouble so please excuse any error as I cannot see what I am typing. They don't come out till 1/15/13. Good luck. Come back to this site if you need further suggestions. I'm surprised no one from Hawaii has responded.
I lived on the Big Island so can relate to what you are going through. My symptoms were different but it was the same in not having the selection of doctors who could treat me. I actually traveled to Maui to see someone; alas it was 10 years before getting my APS diagnosis. I also had other and serious medical issues which complicated my condition. Bottom line: Living in paradise is not easy when one has serious medical issues. And, I think you need to see some top doctors to get diagnosed and get on a treatment plan.
I don't even think Honolulu would be an option for APS diagnosis, not really. Having your family offer to assist sounds really great. Just know that flying that distance is not really good for sticky blood and please do take precautions if you do go that route; take good walks on the flight (I suggest an aisle seat).
Gosh but my words don't sound really encouraging and I don't mean it that way! I just recently had an offer to return to Hawaii, this time to Maui. How I love and miss my island home! I think, if you can get some good medical treatment on the mainland and have a GP on Maui who could work in conjunction with this plan, that you could live in your paradise Maui. For now, you need to care for your body and I send you so many wishes.
First step -- the diagnosis-- an easy, cheap blood test on Maui can tell you within hours if you test positive for APS (or worse, they fly it over to a Honolulu lab and you get results within a day or two). That works for the majority of cases, though there are a few who don't test positive and have most of the APS symptoms. You should have been referred to a rheumatologist for your alarming symptoms already!
Rheumatological problems manifest differently in people, with symptoms overlapping diagnosis, and many of us having several diagnosis. Look up UCTD "undifferentiated connective tissue disease" and MCTD. With my APS I also have Raynauds, as many with APS do. Your purple toes may be a symptom. My rheummy said I also have UCTD because of Lupus and RA symptoms, yet I do not test positive for Lupus or RA. I've had the APS diagnosis for 3 years but recently started getting hard little marbles under my skin on the lower legs and was diagnosed with Panniculitis. So there is a very good chance you have several things going on, and you're doing good with the first step-- arm yourself with all the knowledge you can so you can be proactive with doctors and find the best care.
My personal opinion -- if the test comes back positive for APS -- there is a lot you can research and take to your doctor for treatment, staying in Maui. I hope your symtoms can be alleviated with the right diagnosis and drugs so you can get back to your life, including being in the classroom.
Ironically, I just returned from a week vacation on Maui. In California I am with Kaiser Permanente who have given excellent care for my APS. I did go thru several doctors, but finally found a wonderful rheumatologist who stays on top of my symptoms and takes a large number of blood tests every 4 to 6 months to catch any changes and make sure my medication is the best fit for me. We were driving by Wailuku and I noticed a Kaiser sign which made me feel better if I had to go get my INR tested while on vacation! Keep looking for the right doctor with the desire to play detective and find the answers to make you feel better. The doctor should be open to your research, suggestions and questions too. Of course, with our health care system and your plan through your school district, you may be limited. I would then consider getting a GP to refer you to a specialist out of your plan. It's difficult to fight for them to pay for it, but you can prevail if you cannot find the right specialist for treatment.
It's terrible to wish an APS diagnosis on anyone, but at least you would have an answer and know where to start. With proper treatment, a "normal" life is possible, so keep your spirits up! Also as it has been said, if you're making that 5+ hour flight to the mainland, be sure to read all the pointers about air travel. I even put on compression socks for added insurance, in addition to bouncing up and down like a cheerleader in the rear of the plane every hour or two.
I started laughing when the doctor said it. It sounded funny and I said, "Sure, let's add another label, since I'm now able to say "antiphospholipid antibody syndrome and undifferentiated connective tissue disease" in one sentence-- pannicultitis is a snap!
You've no doubt googled it -- of course, I have the lupus variety of systemic panniculitis, though I don't test positive for lupus. My blood tests always show high inflammation in my body, so it's logical I get this arthritic growth. One website says, "The appearance of single or multiple crops of nodules in subcutaneous fat is the hallmark of acute panniculitis. The nodules are usually, but not always, tender. On occasion, they drain an oily solution and suppuration (pus) may occur. Individual lesions last from one to eight weeks before disappearing, and a pigmented depressed area may be left at the involved site."
I sometimes get just one nodule a few inches above an ankle, or sometime 2 or 3 of them, a "crop" in one area. It's only been on my lower legs above the ankles. They are marble size. They are super tender -- but don't bother me if I don't touch them! Happily, they don't have any pus stuff, nor have given me any other symptoms. As it describes, it does take mine 6-8 weeks to slowly become less tender and finally the marbles to disapppear, but they have left dark pigmented looking bruised areas. With my other bruises, I'm going for the spotted hyena look.
In the past my rheumatologist has brought up the subject of Pacquenil, but with my reading and what is said here, and my philosophy of taking as little medication as possible (mainly warfarin and B6, B12, Vit D and niacin)-- I've turned down taking it and have felt at least I have something in my arsenal if APS symptoms get worse.
Well, with the last crop of nodules popping up, and the doc saying it fights inflammation (and that's a bad guy in my body), I started taking it the past 2 months. So far no new nodules, and I have one marble left that is past the tender stage. We'll see... since I haven't found panniculitis a terrible thing, I may opt to go off the Pacquenil in 6 months or so, depending upon how it goes. I don't like the thought of adding it to warfarin as a forever drug. I guess this is why my rheumatologist closely monitors me with blood tests and such... our conditions can change. I have been grateful having few "flare-ups" the past 8-9 months, in spite of this panniculitis starting at about the same time I start feeling good. 3 years ago to this day, and then 2 years ago, I had pneumonia both years. It took a long while to get my energy and lung capacity back. Also during 4-8 months ago I lost 15-20 pounds, being slightly overweight, so I attributed feeling good with few joint aches to that improvement. The diet change was to lower my LDL from 130 to 103 (and dropping!) since my GP wanted to put me on a statin drug. Just what I need -- a risk of neuropathy from taking a statin. My rheumatologist didn't think I needed to. I can't make APS go away, but we can drop our cholesterol. My doc says people with APS should be under 70 for their LDL. My HDL and triglicerides were good, but I was borderline for LDL. My diet? I made a list of everything that lowers LDL -- and only ate that! Amazingly, a diet that included olive oil, avocados, walnuts and almonds caused me to lose weight and not have hunger (and no meat-- lots of salmon, oatmeal and humus.) And I'm feeling great. Maybe it brought on panniculitis? HA
Hi, so sorry about how you are feeling I used to live in Northern VA about 20 miles of DC that's where I was diagnosed in the Fairfax, VA real good drs in that area
Small world! I grew up in Fairfax County, VA! I have many friends and family who still live there...when you have time , could you please let me know any names of physicians or facilities that you might remember? Thank you so much and hope you are well,
Thank you all so much- I have never been much a blogger but already feel better (emotionally) about this. It's been a nightmare but hearing others' stories is very helpful. I will let you know what the rheumatologist has to say-
Either way, it's quite amazing isn't it- the story of Doctor Hughes and his discovery...leave it up to a Brit to solve a mystery! Whatever my diagnosis (hopefully soon) I will keep in touch and keep all of you in my prayers
I was on holiday in beautiful Hawaii in 2009. We island hopped and when we arrived in Maui, I needed to get more Lovenox injections (I had brought some of my own to top up the Warfarin if INR dropped and I needed more - long story!).
I visited a local doctor who not only had heard of APS, but had also diagnosed someone with it!! I could have kissed him. He was brilliant and understood exactly what I was saying.
His name is Charles H. Ballard. 2439 South Kihei Road, Suite 206A, Kihei. Hi, 96753. Tel: 808-091-6001. vitalitymedicalcentre.net. I kept his brochure with my Hawaiian souvenirs (which is how I have the info still).
I'm sure he might remember the plump English woman who landed in his surgery demanding syringes on the day the surge tide from the Samoan tsunami hit Maui in 2009 (he was out checking his boat when I appeared!).
Any doctor who knows about APS will know by your symptoms that you more than likely have APS. Be aware that APS doesn't always show up in blood tests. I have a friend who has APS and her blood work does not show that she has APS, but she has all they symptoms, including blood clots, and pre-eclampsia when she was pregnant. It is extremely important to get to a doctor. Stop seeing the people who say they've never heard of APS. Tell that dr. its time she or he does a little research!
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