Past & Present
Past & Present
Antiphospholipid Syndrome and joint pain
Is joint pain part of APS? Is that why people with APS go to rheumatologists?
I have had APS for about 15 years but this is the first time I have had alot of joint pain. I've had migraines, brain fog, memory loss, strokes, leg pain, fatigue
Anyone with APS live in the Nashville TN area?
Hi everyone! I stumbled on The Mighty while looking at memes and thought I would give this a try. I’m almost 4 months into my APS diagnosis and am still struggling to learn things I feel like I should know. Do you have any suggestions for good, easy to understand resources?
I need to go though another round of medical care. We moved and I have specialists in my known diseases I need to get established with, and I have new and alarming symptoms which may have serious causes that need to be evaluated.
Even though I'm being treated well currently by my medical providers, and have real diagnoses for the symptoms that were originally called psychosomatic, I'm having a lot of trouble trusting and not having panic attacks. I'm worried any little thing I say is going to make them change their minds and not help me because it's "psychosomatic", and I desperately want and need help right now. I don't want to keep being this sick, and if the knots can be untied slowly and in the right order, Lord willing perhaps I don't have to be this sick.
So how do I do it? How do I get through medical care without losing my mind?
Anyone have a good pep talk? :-) ❤️
#RareDisease #Disability #LivingWithPOTS #PsoriaticArthritis #PeriodicParalysis #Anxiety #PanicDisorder #CPTSD #AntiphospholipidSyndrome #Dysautonomia #MalDeDebarquementSyndrome #OvarianCyst #VonWillebrandDisease #CheckInWithMe
What's on your self soothing playlist?
I have seen that quite a few people in my #APS support group have problems with #myoclonus, so I did a little checking; and found that it is not uncommon for people with APS to have the same #iscemic brain lesions and #white matter changes that I have.
Actually, people with APS haver a 10 times greater risk of having epilepsy than does the general population.
Anybody here have APS and Epilepsy?
Looking for friends!
Don’t get me wrong, healthy people make great friends but when you’re in a flare or going to the doctor every other day, they can’t relate and don’t understand what you’re going through. If you’re in the same boat as me, feel free to send me a message and I’ll gladly be your friend :) #Lupus #PosturalOrthostaticTachycardiaSyndrome #AntiphospholipidSyndrome #EhlersDanlosSyndrome #CeliacDisease #AddisonsDisease #MastCellActivationDisorder #Gastroparesis
Undiagnosed Autonomic Problems
Hi. I had an attack of Transverse Myelitis fourteen years ago in 2007. Thankfully, I have had a great deal of recovery with only slight disability remaining. A year and a half ago I had a meal at a restaurant with a friend. About half an hour later I passed out. My blood pressure went extremely low. I was taken to the hospital by ambulance. I was released a few days later with no diagnosis. Then, last September (2020), I had a second episode of Postprandial Syncope. I had eaten a veggie burger and some tempura green beans, so not a huge meal. I was subsequently hospitalized. A Cardiac Tilt Table Test showed abnormal autonomic function. My cardiologist said it was due to my heart having difficulty pumping blood back to my upper body due to my Transverse Myelitis lesion at T5-7. MRIs done at that time show my old TM lesion as well as two brain lesions that are enlarging, one in my right Inferior Frontal Lobe and one in my left Pons. My MRIs show a history of smallStrokes. They also show increasing white matter. These were compared to MRIs done fourteen years ago when I had my TM attack. I recently wore a Holter monitor, and it shows that my heart function is good.
My Neurodegerative Deseases doctor told me I don't have Multiple Sclerosis. I had a genetic test for hereditary Transthyretin Retinol Amyloidosis (hATTR). Thankfully, it was negative. A week ago I had two hours of Autonomic Testing including a Neurological Tilt Table Test. I also recently had two Biopsies on one of my legs that will be analyzed with a Red Stain Test. I haven't gotten back results for either of these.
Besides the Postprandial Syncope, and bouts of serious frequent Diarrhea, I also have an increasing problem with Myoclonus. It occurs frequently when I am ill of tired. I do not loose consciousness during these seizures. This has been going on for years, but is now getting much worse.
Besides Transverse Myelitis, in 2007 I was diagnosed with Antiphospholipid Syndrome. In 1991 had Thyroid Cancer with Follicular Adenoma and Papillary carcinoma. I have post surgical Hypoparathyroidism from that surgery. In 1984 I had a hysterectomy due to a ruptured Uterus with Adenomyosis. About a year and a half after that, I had an Oophorectory because of rupturing blood filled growths on my ovaries. I also have well controlled Adult Onset Asthma.
I'm listing all this old medical history because who knows, maybe it bears some relationship to my current Autonomic problems.
My question is, does anyone have anything resembling my weird cluster of symptoms, especially the digestive problems and myoclonus? Please let me know if you do. I feel very alone in this journey and would appreciate any suggestions on what to pursue with my Neurodegerative Specialist.
Recent Neurological Attack
In the beginning of September I was out of state when I had an attack that caused me to need to seek medical attention. I had eaten a meal, veggie burger and tempura green beans, so not a super large meal. I stood up and passed out. In fact, I passed out four times before I really woke up. My speech was slurred. My friends had me lie down on couch, where I started having pretty violent myoclonus in my neck, weird rippling muscle contractions in my legs and spasming of my arms. Since I was out of state, my insurance would cover ER visit, but not hospitalization! Next day I still felt worn out and had diarrhea, but things got better as the day wore on.
I called the nurse line for my insurance. They suggested stroke and told me not to drive, but get home ASAP and seek medical treatment. A friend drove me home (two day drive). I went to the ER and was admitted to hospital.
For background: Almost 14 years ago I had an attack of Transverse Myelitis in which I became partially paralyzed and experienced a great deal of pain. Thankfully, I did have a substantial recovery. I also have Antiphospholipid Syndrome. MRIs from that time showed a TM lesion at T5 with damage at T5-7, two small lesions on my left Pons and two small lesions on my right Inferior Frontal Lobe.
Three and a half years prior to my recent experience I had a similar attack after a meal out with a friend. That one landed me in an ambulance ride to a hospital. They said my blood pressure was dangerously low. At the hospital they did a CT scan, but they did no MRIs; and I left hospital three days later with no diagnosis.
Well, during my recent hospital stay, they did MRIs and compared them to the ones taken almost 14 years ago. The four lesions on my brain have enlarged and I have an increase of white matter. They also did a Tilt Table Test which successfully provoked another episode of Syncope and subsequent Myoclonus. (They had to pad the rails of the hospital bed.) I was diagnosed with Dysautonomia.
Having Transverse Myelitis, I know that it can lead to a diagnosis of Multiple Sclerosis. I find that I have five symptoms that point to MS. The Cardiologist put me on Crestor and also Midodrine to increase my blood pressure, told me to wear 20-30 mmHg compression hose and drink electrolytes daily.
I had another episode of syncope on a very hot day few days ago while I was seated, which I hear is unusual.
Yesterday I went to a Neurologist who is not an MS specialist. He reviewed the MRI images and told me that the uptake in the brain lesions is not consistent with MS Lesions. He referred me to a "Super Specialist" who treats neurodegenerative disorders. I called their office and was told that this doctor will review my records and let me know in two days if he will see me as a patient. I know two days is not a long time, but it seems an interminable wait when I have this monster in my head. I'm scared and I want to find out what is going on and if there is any viable treatment.