Frustrated

[designer16]

18 y ago I was told I tested positive for antiphospholipid antibody. This was after 3 miscarriages. Put on heparin during pregnancy. A neurologist told me was high risk for stroke. Yrs later I developed MS symptoms, but I don't fit the MS criteria-spine lesion in unusual location,no eye symptoms, no brain lesions,etc.. No one has been dx for the last 5y. They keep repeating MRI. Recently they repeated the antibody test-Igg/Igm it was neg. I always tested negative for lupus. Doctors don't believe Hughes is real. My legs keep getting weaker but the lesion is not changing. I have all the Hughes symptoms including a pulmonary embolism. Doctors are driving me crazy& not dx me. Anyone who can help.

[MaryF Administrator]

Hi there, sorry you are having such a terrible time, from what you are saying you do need help from a team who understands the condition, yours clearly do not. APS does not go away, and patients often find themselves in some sort of medical wasteland regarding tests if they get a few negative results after positive ones, or indeed like many having had full clinical symptoms, still remaining sero negative. It would help to know where you are located, as then we may be able to give further guidance. You need to think which medical professional is the most approachable in your team.. as we have papers you can print out, and once we know where you, there may be medical care not too far away, if not we can tell you where to aim for. Mary F x

[designer16 in reply to MaryF]

Mary-thank you. I am in Los Altos California. I truly am going crazy. I am complicated, 1st they thought I might have MS from examinating me, but the MRI results did not match my weakness. Then did a MRI that should the vertebral body slipped & I needed a fusion. I was transitioning from a walker to crutches when the surgery failed & the screws came loose. They did a 2nd surgery. I was ok after surgery but then they gave me red blood cells. I remember being terrible pain, coritsone was given. I improved, but when they stop them I inflame. Now I can barely walk with a walker. I saw a neurosurgeon who said I have a autoimmune disease. He wasn't convinced it was MS because of the location of the lesion. He referred me to a Neurologist that specializes in MS. She does not know of Hughes. She is repeating all the MRI again. My spinal fluid showed more than 1 olig. bands, no cells in spinal fluid. I started taking aspirin which helps. I repeated the IGg & IGm, the Beta, & lupus anti-coug--all neg. I have the OB dr. notes and the anticardiolopin was positive. I remember there was 3 parts to this test & my antiphosphate was positive. The neurologist I saw 2 yrs after my preg. told me I had it & I was at high risk for a stroke, etc..When I moved to No. Cal. they tested me & said IGg & IGm was neg. Today I have weakness in my legs that does not match MRI. I have headaches. my arms & jts. hurt, tired, etc. I have a feeling that since my blood test are neg. the neurologist will dx me as progressive MS. Give me steriods. She was also talking about doing a plasma exchange. I am so tired & frustrated with these drs. I just would like to know. designer 16

[MaryF Administrator in reply to designer16]

Hi we have many from the USA on here, who will introduce themselves I am sure and guide you to the nearest help in your area. If you passed the test once.. they need to bear in mind that this is NOT something which goes away, you need your condition urgently sorted with the right anti coagulation. If you go onto the Hughes Syndrome Foundation website itself - link on here you can download various papers... shove those politely in their direction. This will help your case. Best of luck, keep pushing. Mary F x.

[CaliforniaGail]

Be referred to a rheumatologist who I think are the "real experts' with autoimmune diseases. I was surprised a neurologist hadn't heard of APS though. Is it a small practice? I've been lucky with a great rheumatologist at Kaiser in So. Calif. in addition to an informed GP. I went thru several doctors though. So you haven't been on warfarin after the pulmonary embolism? Once having an APS dx and a PE, the protocol is warfarin for life, even if other tests turn neg. At least keep taking the aspirin! Has a doctor suggested Pacquenil for the joint pain? My mother had RA, my sister has MS and I have a combination of several, only testing positive for the APS antibodies, (not lupus). I know it gets so frustrating; try to keep your spirits up!

[designer16 in reply to CaliforniaGail]

Thank you CaliforniaGail-When I moved to northern CA. Kaiser told me the test where neg. so it was gone. They never treated for it. The last 5 years no one has addressed APS-Including the 4 neurologist I have seen. I recently was fedup. I went to Sunset Kaiser because that was where I was dx with the anticardiolipin antibody. The neurologist was tops but when we brought up Hughes she acted like she had not heard of it. As a matter of fact I handed her my iphone with Hughes web site. she said she did not handle APS and she would refer me to a stroke dr. I would love to know your rheumatologist and which so. cal. kaiser location. Thank you for your support and information. designer16

[CaliforniaGail]

There are many doctors who make mistakes, they're human, so it's up to us to be proactive. I was told by 2 doctors within a week of each other, after terrible symptoms, that I had bronchitis and was given more antibiotics and sent home instead of diagnosing the pneumonia and PEs in both lungs. But after the PE, I was told in no uncertain terms by the hospital doctors and then my GP and rheumy that I'd be on warfarin for life once diagnosed with APS and one "big event" like a PE. My question was, if I tested negative several times during the next couple of years, can I stop warfarin? I was told it would not be adviseable. For years I had painful hand/foot symptoms, being referred to several types of doctors, podiatrists. At least with Kaiser you can be referred to as many doctors as it takes. Finally when I saw a rheumatologist for my foot/hand pain (also joint aches), Dr. Parke Chang said he suspected Reynauds and started taking a battery of tests. He called me late at night to say "start taking a baby aspirin immediately", since one of the tests showed antiphospholipid antibodies. Unfortuantely, I was already sick with "bronchitis," which landed me in the hospital a week later after the PE made me one sick lady. I just said "antiphospho" to the ER doctor from my conversation with Dr. Chang, and the ER doc immediately jumped and rushed me to a scan, knowing what he was dealing with, and found the multiple PE's in both lungs, and then an ultrasound found the DVT in my leg. Too bad I hadn't seen Dr. Chang a month or so earlier-- taking aspirin regularly might have spared me the PE and warfarin for life.

Chang, Parke King MD

Kaiser Permanente

411 North Lakeview Avenue

Anaheim, CA 92807

Unfortunately, he's Southern California. I'd tell your GP to give you a referral to a rheumatologist who KNOWS what APS is. I wouldn't waste time with the neurologist's referral to a stroke doctor (cardiologist?) who isn't specialized in autoimmune diseases; I would see a rheumy or a hematologist. Once you know about APS (reading on this site will do it), you can easily tell if the doctor is a good fit for you. I liked how my rheumy goes at me like a detective, goes over the latest blood work, sometimes ordering different type blood tests (Kaiser's website is great to see all of your test results), fires questions at me, examines fingers and fingernails (he later showed me the long, horizontal depression in my thumb nail that was growing out, which signified the earlier pulmonary event. cool! I didn't realize that your fingernails can reveal health issues too). He checks the fingertips for lovely diseases like Scleroderma that may develop. When funny nodules appeared on my legs this year, he knew it was panniculitis. Now I'm worried that he's so knowledgeable-- there must be a good reason he keeps re-checking me for the other nasty conditions that may develop. You have good odds that more autoimmune symptoms will emerge through the years-- and some symptoms ebb (mine started around 50, but my sister's MS was at 20), so it is important you have a knowledgeable doctor to monitor you. And it helps to check out your other family members' medical histories-- autoimmune stuff runs in families. I didn't know there were so many in my family with thyroid problems, but so far I haven't tested pos for it. Good luck!