While I was diagnosed as M.S. two decades ago, then not MS, then probable Lupus ..... At this point, my docs have settled on hypercoagulable with an autoimmune component. And for some docs, probable seronegative APS. Thank you Luisa for sharing the HSS annual report yesterday. The parts that really weighed on me from the doctors were these very telling statements:
"How do you diagnose a rheumatic disease when the patient exhibits symptoms that appear to be related to lupus and, yet, they also have symptoms that signify rheumatoid arthritis? This conundrum occurs time and time again in rheumatology practice. It's a challenge for the physicians who have to determine and justify treatments. It's a frustration for the patients in their care who have to live with the uncertainty of their diagnosis. .... Michael D Lockshin, MD, Director of the Barbara Volcker Center for Women and Rheumatic Disease at HSS and the immediate past Editor in Chief of Arthritis & Rheumatism, is one of the nation's preeminent experts in systemic lupus erythmatosus, APS, and other autoimmune diseases. In his nearly four decades of clinical practice, Dr Lockshin has seen more than his share of patients whose symptoms defy standard diagnostic criteria in a field that already encompasses some of the most challenging diseases in medicine."
"Overlapping rheumatic disease is problematic on so many fronts... .... reviewed nearly 3000 patients .... about 25% of these patients do not fit diagnostic guidelines, and they don't fit for several reasons..."
"The most important of these ... is overlapping disease which can present in two ways: one in which patients have evidence of multiple diseases simultaneously, and one in which they have evidence of multiple diseases sequentially. "For example, patients can be in both categories where their diagnosis begins as lupus, and a few years later it looks like they have straight rheumatoid arthritis, and a decade later the diagnosis is back to lupus again."
"Further complicating the clinical picture is overlapping rheumatic diseases is that patients may have co-occurring disorder such as Crohn's disease, multiple sclerosis, or diabetes. "These appear far more frequently than you would anticipate in patients with rheumatic illness and can interfere with what is regarded as best treatment practice."
That brings me to today. I haven't been having significant M.S. symptoms lately. Then recently my foot drop on my right foot is starting to spring up in the last few days. In addition, my phantom symptom of the feeling of having bugs on my skin is flaring up again. Whenever I am in relapse for MS, I have phantom symptoms that my doc says are neuropathic in nature and are related to when the lesions in my brain are brighter on the MRIs. Yet, with no official diagnosis there is no treatment.
I mentioned yesterday to hubby that I feel the foot drop coming back. I haven't mentioned the bugs. I try not to worry or bother him, but I believe in giving a heads-up when a slide may be taking place soon. I also believe at these times in increasing exercise and working out harder (or changing it up) so that neuroplasticity has a chance. That's where you activate a region around the lesion and the brain can by-pass the lesion and all is well. So for example, when I get numbness in fingers, I pass a basketball around my back to activate new brain development in the area of fingers moving in the brain or I try to play a piano tune (hahaha). I believe neuroplasticity helps. I also am more watchful and concerned with what I am eating when I see flare-up twinges.
Back to the bugs. I can't stand that feeling of bugs crawling on my skin. There aren't any real bugs of course. It takes a lot of self control to not go crazy at those times. Other Phantom Symptoms I have had in the past caused by the brain lesions include feeling water pouring down my calves (as if in the shower) and a spot on my back that feels like my skin is literally on fire (I touch it with an ice cube and the pain goes away - shocked into neuroplasticity).
Hopefully, this latest return of early on M.S. symptoms disappears before I am slurring my words and falling on my face again when a leg goes out while walking.
I realize many of you here also go through the changing of relapsing of symptoms over time. I'd like to hear your stories.
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Tranquility1
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It's too bad they won't give you warfarin or heperin. When I had my worse case of MS, but not MS, I had a seizure in the ER. They put me in the hospital with electrodes all over my head. For three weeks I was struggling to get words out, my arms and legs were jerking, one night all my large muscles started twitching, and I couldn't read or remember anything. That and severe stomach pain and headaches. In they hospital put me on heperin, and suddenly my symptoms just about completely disappeared. No one noticed I was better, including me and then I spent months wondering how it was I got so quickly better, until I came across the same article you did by Dr. Hughes.
You should least be allowed to try heperin or warfarin, but we are in New York, and we have to have a stroke or high titers.
I hope you feel better. Are you taking plaquenil now, to? Prednisone also helps clear my head somewhat (not as well as heperin did). You might be able to get some prednisone for a few weeks. But blood thinners--too dangerous!
Yes, I wish they would. I am only asking for a trial.
I have never been offered plaquenil by any doctor - so "no" I am not taking it. I'm not allowed prednisone because the combination of prednisone and hypercoagulable has been shown to cause osteonecrosis. There are many studies regarding prednisone, hypercoagulable, and ostonecrosis. Here is a link to Google scholar search with many resulting studies.
I also wish you could have some sort of anticoagulation. When you meet this new doctor that Prof Hughes has informed you of I hope she will help you with this "anticoagulation trial".
It is so interesting the things you write. I have just found out that "sero-negative" is not acceptable in the US. I do not know if it is here in Sweden either as a matter of fact. I will ask my Rheumatologist.
I've only taken prednisone in low doses for relatively short periods of time. A lot of people with autoimmune disease take high doses and for long periods of time. I didn't get into the weeds of those articles. Right now I'm taking 7.5 mg of prednisone. I do get better results with higher doses, but prednisone is scary anyway. But I suspect people who get osteonecrosis are on higher doses for long periods of time.
By the way, I'm right in there in that article. My diagnosis is lupus like UCTD.
And I've been only asking for a heperin trial, too. I just can't understand how we can be so symptomatic and it isn't worth even trying a heperin trial.
Maybe you should ask your rheumy about plaquenil. It takes a long time to work, but maybe eventually you would see a difference.
I am going to now. The plaquenil discussion will be happening with him at the next appointment.
To me, it's only Rheumatologists who are "troubled by" overlaps. Autoimmune genes come in multiple autoimmune overlaps quite often and that's just the simple fact. Trying to tease out single disease out of multiple overlaps, is a total waste of time!! We live with overlaps and that's how it is. I dislike sounding harsh but it is true, we have to live with these and the reality, personally. They say, there is no "single SLE" there are different diseases of SLE (different genes responsible). If Rheumy is struggling with this genetic reality and they would be forced to make a huge shift in their thinking of disease "classifications", tough luck (at least, they are making well-rewarded career out of it!) Sorry to be blunt. I do have a pet-hate re. spending far more passion and efforts on any "academic" guidelines and such when they should be directing their passion for thinking of "how they could help patients more". "are we doing well to treat patients better?" etc. Doctors are there for helping patients not messing around with "oh this patient doesn't fit in this criteria or that criteria and she gets no treatment". Rubbish.
I am so glad that you have found the best APS-doctor there is!
Those who have met those doctors usually get the help they need and are also correctly anticoagulated which is the main thing with this illness, isn´t it?
Kindest Regards to you from Kerstin
Yes, indeed!! Thank you so much for the kind words - such a lovely ray of sunshine, Hugs xxx
One reason why many doctors are so rigid in US is their fear of lawsuits. There are many patients who can and will file a lawsuit if anything goes wrong. There are predatory patients in US who are looking for a reason to file a lawsuit. In a lawsuit if the patient can show that the doctor did not follow guidelines, the patient will win. For example if a doctor gives coumadin to a patient who has never had a blood clot, and that patient dies of a bleed, the doctor can be sued.
Doctors have malpractice insurance, but their premiums go up if they are sued. If they have multiple lawsuits, they may become unable to get malpractice insurance because the insurance companies will not sell it to them. So failure to be rigid can put a doctor out of business.
However, because doctors are independent in US, they are all different and there are a few who are willing to take risks. These doctors are hard to find but when you have autoimmune disease you have to have an open-minded doctor. It took me many years to find one who is willing to think outside the box. He is taking on a lot of personal risk by thinking of the patient first. But I think his patients are so grateful that they would never sue him. I know I am.
The U.S. litigation is out of control. I owned a small little business. In a few short months I was sued twice. My insurance company settled out of court because it wasn't worth attorney fees. One woman was at a corporate party and flashed one of my cameras and was fired when her company was going through the party pictures and found her activities to be unrepresentative of their corporate poloicy. She sued my little business because she flashed the camera and was fired for it. While we would have won the case, it wasn't worth the attorney fees to my insurance company and they settled out of court with the flasher. My little company became uninsurable due to ligious people looking for free money. I presume the medical industry must have the same litigious people undermining their work too.
It's not vastly different here in the UK. Many doctors stick to misdirected guidelines and they're not afraid of putting patients lives at risk to keep their cushy jobs as M.D. Many patients had to see so many useless doctors before we get any help. Me included.
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The plaquenil discussion will be happening with him at the next appointment. 
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