Refused treatment beginning of the year and now I read more on my condition **sigh**
I have a rare heart disease cardiac amyloidosis and they wanted to do a heart catheterization (ablation) on me, inject dye and fix blockages or anything. I declined that in January. I read an article saying something about if left untreated you may live two months to four years. Anyways, I don’t tell anyone about it much. It’s hard to find strength to go through things alone. I already have multiple chronic illnesses, so I just haven’t decided my plan yet. What if I missed the window to do something?! My children don’t get that I am even sick.
So I make the lumps that grow from within muscle tissue when there is minor trauma to my muscles. I have to go to a Neuromuscular Neurologist in October to see about Amyloidosis and Sarcoidosis. I think my doc is questioning if the lumps are an odd presentation of either condition. If this doctor cannot help me then it may be to Mayo or somewhere else. If we can find a doctor who may have seen this before.
I belong to a pain clinic that is not prescribing narcotics. The docs there are very helpful as well. The Naturopath has mapped out the lumps. He thinks there is a possibility that the connective tissue in the muscle starts growing uncontrolled. He has never seen anything like it. Nor has any other doctor I have seen.
Now my insurance through the state is set to change. If it does I will have to pay all co pays and Co insurance, pharmacy bills and Medicaid pays my Medicare payment only. I am in a scary place.
Hi there. I am 58 yo and don’t really remember life without pain. I had burns on my arms from pulling the iron down on myself at 14 months resulting in 2nd and 3rd degree burns. Thankfully it landed on my arms. There was no understanding that at this young age the neuropathways for processing pain are very fragile. An injury like that and the following treatment is now understood to blow apart neuropathways. That set me up for experiencing pain differently.
I was constantly ill with bronchitis. Well maybe not constantly but 3 times a year. And many other illnesses. I became aware of subluxing knee caps at the age of 6. Reactive low blood sugar that has a 1969 understanding of like blood sugar at 6. My brother started punching and kicking me at 6. He is 5 years older than me. My parents never told him to not hit s a girl. He figured it out as an adult and informed me very clearly he taught his boys to never hit a female. I am proud of him for learning on his own. We all learned alot on our own.
I had surgery on my knees in 1975, 1976, 1979 and 1980. I was rushed to the ER for allergies at 14 with what was thought to be anaphylaxis and again in 1980 with dehydration from mono. But I managed to be in band during some of these years, swim for 8 months on a city league team and do white 3 water after trips with a youth group over 3 years. I worked at 14. Had to stop at 16 and couldn’t manage college until 20 years after graduating due to needing a break from school after graduating. I had 2 employment goals: 1. Work in the arts. 2. Help people. These were kind of broad. I became a photo printer in 1985 and graduated to custom photo printing in a darkroom. I worked in Human Resources for a few years as an intake specialist helping people without disabilities train for specific jobs and gain employment in the same company. I became a phlebotomist then moved into medical assisting working in a large clinic. We had practitioners who did family practice and ob, internal medicine and even geriatrics. I helped with newborns literally all the way through doing from old age. My final job was to care for my sister who has early onset dementia. She passed in 2017. My body gave out a month later.
I had developed a lot of diagnosises over the years including Dysautonomia and either Ehlers Danlos or Hypermobile Joint Syndrome. I have many comorbidities of both. I have a condition that no one has yet to be able to diagnose. It causes lumps that grow from within my muscles and make my muscles spasm. Some are visible, others are palpable. They seem to grow from minor trauma. One thought is that the connective tissue’s started to grow and grow and grow uncontrollably. Without a biopsy we will not know. I see a neuromuscular neurologist in October. I also need to be checked for Amyloidosis and Sarcoidosis.
I do get that life is very hard. But I love to enjoy everything possible anyways. Color, beauty, sensation. Life.
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.
I'm glad you're here. Really glad.
Here are some things suggested I test for/rule out, either by my own logic, or a person from an online forum or community. I take it with a grain of salt but it’s good to make a list
- Endocrinologist: Diabetes Insipidus, pheochromocytoma, adrenal tumor (adenoma), hyperaldosteronism, Pituitary Gland tumor/dysfunction
- Genetic: Amyloidosis, Sarcoidosis, Scolederma (G-GMA sister had it), genetic disease sweeping
- hEds, etc
- retesting Lyme, even though I’m adamant it’s not that and I don’t trust third party testers or the CDC, soooo.
- retesting inflammation markers, although they were normal last time
Let me know what you think! Again, please read all of this to get the full story.
I'm 35 female. Recently diagnosed with small fiber neuropothy. That's 1 of like a dozen problems.
T.m.i. coming up...
It started with constant diarehhea now 7 months, every day. If I eat, I'm in the bathroom, within an hour or 2.... I cant control or hold it past 3 minutes... intake up all night with urges to "go" and I dont.. if I try and hold it for 2-3 minutes like when I'm driving.. my legs go numb......
Over the last month I've lost 20 lbs. Now 120. 5ft2. I have had thousands of tests it seems... MRI's cats xray emg erg spinal taps urine blood stool etc..
I'm "normal" not sjorgens not amyloidosis. Not diabetes... I get stroke like symptoms. 3xs already... once while in hospital undergoing mri... mri was NORMAL....
I'm terrified. There is SOMETHJNG wrong and I dont know what else to do :-( https://dr.s r giving up(g.i. neuro, uro gyno. Etc.)
Any ideas???? Please!!