Here is my experience (and I have the medical records to prove it, so I’m not just making this up): - I severely injured my leg (to put it mildly, it was pretty nasty) - I followed all the standard first aid protocols perfectly (I’ve done sports and dance, so I know the drill)... cold showers, bandages, elevating the leg, heparin gel, ice, and total rest. - There was a lump about the size of a mandarin orange... it’s an ankle injury, and I couldn't move the joint even a millimeter... I even sleep with my leg wedged between pillows just to keep it still. - Since I’m not prone to panicking, I didn't rush straight to the doctor the second it happened. - But things weren't improving, so my boyfriend drove me to the Drašković Trauma Hospital. - Once we got there, they practically mocked me, acting like I was just complaining over nothing... I had simply stepped awkwardly, and now I'm in agony (this was day five, and I hadn't felt a shred of improvement). They ordered an X-ray... but before that, during the exam, they hysterically ripped my bandage off because they didn't want to wait for me to unwrap it. Then, they sent me home saying it wasn't anything serious—just a bad step. They sent me out without a bandage or any support! They didn't even realize someone had driven me there or ask how I'd get home; I was on crutches, and they actually made jokes about it. I couldn't even touch my foot to the floor from the pain, let alone carry any weight. - Another week passed... seven minutes of icing, heparin gel, an elastic wrap, and using crutches just to get to the bathroom. The pain was absolute torture, and there was no relief... that mandarin-sized lump was still there. - Finally, my boyfriend rushed me over to the orthopedics department at Mount Sinai Hospital... and the exam there revealed that I actually have torn ligaments. The doctors there were shocked that the Drašković Trauma Hospital had even sent me home. The Trauma staff just laughed at me and dismissed me like a spoiled child who simply tripped the wrong way.
Plantar fasciitis isn't quite the same thing as a heel spur! While you might have a spur alongside it, they aren't necessarily linked. I deal with plantar fasciitis myself, yet I don't have any spurs. Honestly, sometimes it feels like my plantar fascia is just going to explode from all the tension and intense pain. If you're looking for some solid info, check out this article: PLANTAR FASCITIS -- shared by UC Mini
For me, wearing a night splint was a total game-changer—it actually helped more than the exercises did. That said, I still make sure to do the stretches. Whenever the pain flares up again, I’ll wear the splint for a few nights and feel much better.
The only time I felt zero pain was when I was taking Medtronic. Once I stopped, the discomfort came right back. Of course, nobody is crazy enough to rely solely on Medtronic just to manage plantar fasciitis.
I’m feeling pretty frustrated right now, so I need to vent a little bit. At DZ Siget, it seems to be a regular occurrence. My doctor is currently on vacation. I called last Friday and again this past Monday... just heard ringing and ringing... nothing. I tried again on Tuesday... still nothing. Then I called the main office... they said he's on leave and Dr. J. is covering for him. So... I just need one single prescription. I’ve been calling all through Tuesday, all day yesterday, and since 7:30 this morning. Nothing. Now the line is just constantly busy. To make matters worse, there isn't even an option to send a text or an email. I realize they might be busy, but still... If I show up tomorrow without an appointment, I know they'll complain about people coming in person instead of calling and creating a crowd.
We can't exactly tell her that what she's feeling isn't quite the same as our experience. Because of my lupus, I used to deal with some really scary episodes of rapid heart rate. But I never experienced shortness of breath once I managed to tune out those symptoms. I wasn't overweight either—I stayed right around 110 pounds at 5'5". My blood pressure was steady at 110/70, and I didn't have issues with blood sugar or thyroid problems. I never suffered from panic attacks. I wasn't an anxious person by nature. And my heart palpitations were never triggered by stress.
The bottom line is this: don't play games with your health. It’s much better to be proactive than to wait for things to go wrong. If you feel like one doctor isn't taking your concerns seriously, go find another one. Be firm about wanting to try a treatment plan they suggest... then see how it works for you. Tell them clearly that you can't keep living like this because it's becoming unbearable. I know firsthand how terrifying this feels, which is why I wanted to reach out.
I almost forgot to mention this! You really shouldn't stop taking these medications abruptly...it can be incredibly dangerous. For instance, the instructions on my Propranolol warn that stopping suddenly could trigger a heart attack...in extreme cases, it could even be fatal. So please, don't make any sudden decisions about stopping your Bisoprolol 2.5 mg on your own. While weaning off it might feel a bit smoother than it does with Propranolol, you still shouldn't just quit overnight.
On another note, I struggle with low potassium; whenever my levels drop, I get muscle cramps and my palpitations get much worse. Have they checked your potassium levels lately? Low levels might be making everything feel more intense. Last year, I also dealt with a severe bout of anemia for the first time, which made my heart race and left me winded just from a simple walk. Once I started iron supplements, things settled down. Even with the Propranolol, the low potassium and anemia definitely added some extra stress to my system—though it wasn't quite as overwhelming as when I wasn't on the medication at all.
It’s easy for these different issues to pile up and make everything feel much heavier.
It seems to me that hitting a heart rate of 144 during a simple walk—even while on medication—is unusually high. It feels quite out of proportion to the activity. I’d say that feels more like a leisurely stroll than actual strenuous exercise. I had a similar experience... my heart rate would spike to 200 just from bending over or a quick movement. It was quite intense.
I wore both a 24-hour Holter monitor and a blood pressure tracker at the same time. It was strange to see my heart rate spiking up to 150 bpm, even when I was just doing something simple like washing dishes at home.
Everyone kept insisting it wasn't a big deal, but to me, it felt genuinely overwhelming. The echocardiogram showed some mild mitral valve prolapse, along with an occasional murmur.
They told me it was far too minor to be the culprit. I haven't actually dealt with panic attacks myself. It wasn't really possible for them to pin my issues on something like that... but honestly, feeling that intense surge of fear when your heart starts racing? That’s just a natural reaction.
Long story short... I eventually reached my limit and told my cardiologist that I just couldn't deal with those symptoms anymore. She switched me over to Propranolol, and honestly, it’s been a total game-changer—I feel so much better now. I believe that throughout my five years on this treatment, I haven't encountered a single issue.
Since I live with systemic lupus, there’s a higher likelihood of experiencing things like mitral valve prolapse and tachycardia—it affects about 30% of people in my situation. On top of that, because of antiphospholipid syndrome, I'm on a daily aspirin regimen to help with blood clotting. It might explain why they react a bit more strongly to my specific symptoms. It isn't a certainty, but my cardiologist is excellent and truly takes my concerns seriously.
If I were in your shoes, I’d definitely insist on seeing a cardiologist—maybe even getting a second opinion. A heart rate of 144 while you're on Bisoprolol 2.5 mg seems a bit off to me. Is it just me, or does that sound a little suspicious?
Without any medication, my average heart rate sits at about 97 beats per minute. I am currently on therapy A at a dosage of 67.
I would personally head over to a different cardiologist. With a Holter monitor reading showing 144 bpm while you're already on medication and just taking a light stroll, it's definitely worth getting a second opinion to see what they think.
Keep me posted on how things are going! I always find myself wondering what comes next. Sharing our experiences can really make a difference; you never know when your story might be exactly what someone else needs to hear.
I was getting some blood work done to investigate systemic lupus, specifically looking into my connective tissue markers. Born in '68, I honestly have no idea what vaccines I ever received. My immunization records were never kept in one place; they moved from elementary school clinics to college health centers, then to family doctors... my official medical history just seems to have vanished into thin air. However, my serology shows positive IgG antibodies for chickenpox (Varicella) and rubella. Since I actually caught both of those illnesses, it makes sense that the antibodies are present. I vaguely remember them offering rubella shots back in middle school... I think I was in 7th grade. I had just returned to school after having the flu, so they skipped me that day. For years afterward, my parents would ask doctors about getting me vaccinated during my routine checkups... but with all the chaos of annual physicals, it eventually just slipped through the cracks, and I ended up catching rubella.
On the other hand... I don't show any antibodies for mumps or measles. Which implies I never received those specific shots... Back then, it seemed like only the girls were being prioritized for certain vaccinations... But for everything else included in the standard American immunization schedule at the time, I was fully covered.
I assume most people my age haven't even thought to run these types of tests, though some might still have their old records tucked away somewhere. I'm curious—for those who do know, what does your vaccination history actually show?
In my experience, it feels like almost nobody in the healthcare system—or any other institution—is willing to actually tell people what they can do or what specific rights they might have. Sometimes things are just glossed over, and other times, there’s this assumption that patients already know everything. For instance, a friend of mine went through breast surgery, radiation, and chemo. For years, she had no idea she was entitled to a specialized bra and a prosthesis. Even though she didn't undergo a full mastectomy, because part of the breast was removed, those two items were covered. She ended up paying for them out of her own pocket. On top of that, she deals with swelling in her arm, but no one ever mentioned that she could get lymphatic drainage covered by her insurance. She’s been paying for those private sessions herself. Even though she’s a member of an organization that distributes pink ribbons, she didn't receive this vital information for years—and surprisingly, she didn't even hear it from the association itself.
From what I've seen, it seems like in America, you really have to be your own advocate. You have to sit down, dig through the rulebooks and legal codes, and scour the internet just to figure out what you're actually entitled to.
That’s why I decided to start this thread. Some people manage to navigate the system successfully, others struggle, and some don't even realize there's a fight to be had.
There’s also another issue: patient communities in the US can feel quite fragmented. While there are a few very active advocacy groups, the groups that don't have a strong leader pushing them forward often seem to struggle to exist at all.
I decided to start this thread here instead of the usual spot because I think we’ll get more engagement. Since so many of us navigating health challenges are active here, it feels like a better space to share our stories—the good, the bad, and everything in between—and hopefully offer each other some support.
I wanted to open up a conversation about whether your diagnosis has opened any doors for you regarding legal rights or benefits... such as disability status, specialized care, or various types of assistance.
For instance, I live with systemic lupus. I’m particularly interested in hearing from others dealing with autoimmune or connective tissue disorders.
That said, please don't feel limited to just lupus; I want this to be an open floor for anyone who has had to navigate the complexities of the healthcare or social support systems while managing an illness.
Hi everyone! I was wondering if anyone here has been diagnosed with Restless Legs Syndrome? I'd love to know what kind of treatment you're using, who provided your diagnosis, and what specific tests or screenings were performed. Thanks!
I might be in the wrong thread... but I'm running out of options. Would any volunteer be willing to stop by the local clinic near DZ Siget in NYC and ask if they could take names at the front desk specifically for phone-in prescription requests? I’ve been calling for four days straight... either the line is busy or nobody picks up. Most of the time, there's just total silence on the other end. It's critical because I need medications that I absolutely cannot stop taking, and I'm currently away from NYC... Should I head to the ER since my usual LOM hasn't returned my calls all week?! Or am I supposed to just try buying a beta-blocker and an anti-epileptic on the street?!?!
They’ll get through it... the key is just staying calm. I honestly find myself worrying about everything lately, even though my spinal tap went perfectly fine! My neurologist walked me through the whole process... I was still pretty nervous, but it wasn't nearly as bad as I imagined.
A lumbar puncture is used to diagnose things like MS, meningitis, encephalitis, or various other neurological conditions... you really can't get a definitive answer without one.
What are they looking for in your case? You mentioned some lesions showed up on the imaging... I'm assuming you mean a brain MRI?
A lumbar puncture usually wraps up in about 5 to 6 minutes. They just draw some spinal fluid and send it off to the lab for testing. The golden rule is to stay completely relaxed while they perform the procedure. In my case, my neurologists insisted I stay strictly bedridden for four days. They felt that was the smartest way to avoid those post-procedure headaches that some people experience—though certainly not everyone! Honestly, lying still actually felt quite therapeutic for me. They even advised against watching TV or reading to keep me totally rested. I know some patients jump right out of bed immediately, and typically, you’re just supposed to lie on your stomach for about two hours afterward without getting up. However, I decided to follow my doctors' orders to the letter, even though the floor nurses were really pushing back and trying to get us up and moving. When my doctor caught me out in the hallway and I explained that the nurses were pressuring me to head to the cafeteria for meals—since they don't serve food in the rooms here—she lost it. She actually called my other neurologist over, and they ended up calling all the nurses into my room for a serious talk. They made it clear that I am only permitted to get up for the restroom, that they are responsible for my care, and that they need to bring my meals directly to my room. Of course, that wasn't the experience for everyone. I was a bit of a difficult patient myself...
If you want more details, just search for information regarding lumbar punctures; there is plenty of helpful material available online.
amberfox99 said:Sophie7, any blood sugar reading above 11.1 at any point is enough to diagnose diabetes. What are your levels? Since diet alone isn't keeping your numbers within a healthy range, you'll likely need to start medication soon. Take your logbook with all your readings to your primary care physician as soon as possible; they will probably start you on therapy right away.
I wrote that post after visiting my family doctor and then seeing a specialist at Mayo Clinic... those were the specific tests they ordered... and they told me that these spikes and fluctuations in my blood sugar aren't a big deal—that it's perfectly normal and nothing to worry about. Even symptoms like blurred vision? They said that doesn't mean anything either, because my OGTT results came back fine... if there was an issue, the test would have caught it immediately. Since I haven't been admitted to a facility like Mayo Clinic where they monitor you under strictly controlled conditions, I feel like they might think I'm exaggerating my glucometer readings! Their explanation is just that blood sugar rises naturally and everyone experiences it, and surely I must have eaten something... though I'm allergic to eggs and wheat, so I don't touch pastries, pies, or cookies. And if my fasting levels are high... well, that happens too.
Basically, the consensus among them is that I'm fine. My GP gave me a prescription that lasts for a year, and I doubt he'll give me another one since he’s satisfied that there's no problem... which just means less work and less money spent on me. As for responsibility... even the specialists at Mayo Clinic said everything looks okay.
Now I'm stuck. I don't feel well, and even though I'm watching what I eat, I feel terrible because I'm eating so little—barely a third of a normal meal, and that's assuming a standard diet.
I'm really lost here and can't see a way forward. All I got from the doctors was that I wasted two days just to be told that these results and symptoms are common for everyone, not just people with diabetes.
I forgot to mention: whenever I experience those strange changes in smell and taste—especially when my urine smells off and I’m feeling nauseous and disoriented—red welts break out on my upper forearm, looking almost like I've scratched my skin raw. Sometimes they show up on my shin too.
I honestly feel like a hypochondriac sometimes... nobody seems to believe how poorly I'm actually feeling, but I truly am struggling. Living alone makes it harder because there's no one here to check on me if things take a turn for the worse. It’s a bit worrying. My mother was diabetic and required insulin, and her sister was the same.
47 years old, diagnosed with SLE and APL syndrome. Currently taking Andol100, propranolol, Lamictal for TN, and Advil as needed. The SLE is currently inactive. About a year and a half ago, I had subacute thyroiditis. While on Medrol, I dealt with menstrual irregularities and heavy bleeding—I actually had to have steroid myopathy treated because of the Medrol. About two years ago, after stopping the steroids, everything returned to normal. That’s a quick snapshot of my history.
Last year, starting around June, I suddenly lost my period for nearly five months. My FSH levels were within the normal range, though I did have a fibroid. Eventually, my cycle returned, but it has become much shorter, lasting only about 17 to 20 days, sometimes accompanied by two days of intense bleeding. No pain, though. Occasionally, I feel discomfort in my neck in the same spots where it hurt during my thyroid issues. At the same time, I spent the entire summer dealing with terrible nausea and a strange odor in my urine, along with an unusual taste and smell in my mouth and nose. An ultrasound showed kidney stones. These symptoms persist almost daily now. Toward the end of November, I started experiencing vision issues—sudden episodes of blurred vision lasting anywhere from a few to ten minutes before clearing up. This has continued until today. Since I have lesions on both optic nerves, I went through extensive testing: VP, VEP, full ophthalmology exams, and seeing a neuro-ophthalmologist. They couldn't find a reason for this intermittent blurring.
As time passed, things just felt worse. I was feeling isolated, stumbling around at times, struggling to concentrate, and constantly tired. Then there was that awful smell in my nose, the taste in my mouth, and the scent of urine (even though my urinalysis was sterile!). One day, I couldn't even follow what a colleague was saying because the brain fog was so thick. I checked my blood sugar with a glucometer and it was 14. Because I felt nauseous all week, I tried eating a "diabetic-friendly" diet—lighter meals, no fasting—since my mother was diabetic and I know the drill. This morning, I had oatmeal and an orange for breakfast. For lunch, I just had a small bowl of Rice-A-Roni around 12:30 PM. My glucose was around 14 at 6:30 PM, then dropped to 7 by 8:00 PM. I had lab work done at the clinic: OGTT results were 5.9/6.3 (not labeled as pre-diabetic). Fasting glucose was 5.9 (normal range 4.4–6.4). Everything else seems to be within normal limits... glucose in urine is normal (L). Ketones in urine were 35 (normal L). TSH is 1.53 (normal 0.34–5.60).
I’ve been referred to an endocrinologist. Here are the findings: Beta cell activity is 47%. Peripheral insulin sensitivity is 115.9%. Insulin resistance index is 0.9 (unit 1). Reference ranges weren't listed! (Ten years ago, I had early-stage glucose intolerance and insulin resistance, along with menstrual issues and weight gain. Metformin brought everything back to normal, and I stayed off it for two years once the results looked good.) Other recent results: Fasting glucose: 6.6 mmol/L (normal 4.4–6.4) HbA1c: 5.6% (normal HbA1c SI: 38 mmol/mol (normal eAG average glucose: 6.3 mmol/L (normal Insulin: 37 pmol/L (normal 21–174) PTH: 8.6 pmol/L (normal 1.5–7.6) LH: 15 IU/L (follicular phase 2.1–10.9, mid-cycle 19.2–103, luteal phase 1.2–12.9, postmenopausal 10.9–58.6) FSH: 37.9 IU/L (follicular phase 3.9–8.8, mid-cycle 4.5–22.5, luteal phase 1.8–5.1, postmenopausal 16.7–114) Testosterone: 1.6 nmol/L (normal 0.3–2.6) Estradiol: 287 pmol/L (follicular phase 99–448, periovulation 349–1589, luteal phase 180–1086, postmenopausal 73–147) Prolactin: 182 mIU/L (normal 71–566, postmenopausal 58–416) Progesterone: 3.4 nmol/L (follicular phase 0.5–3.1, luteal phase 13.1–49.4, postmenopausal 0.2–1.5) DHEAS: 5.7 micromol/L (normal 0.5–6.3) Androstenedione: 8.3 nmol/L (normal 0.7–13.9)
The endocrinologist says everything looks fine. Since the PTH isn't significantly elevated, they don't think it's a major factor. Interestingly, my PTH was already high when I was first diagnosed with insulin resistance, and my cortisol and ACTH were low back then too.
Five years ago, I ran some tests; back then, beta cell activity was 78% (and now it's 47%!?!?). The OGTT was fine. Insulin reference range is 21–174—back then it was: Fasting: 41 30 min: 270 60 min: 320 120 min: 160 180 min: 30 ...300 min: 37. C-peptide reference range is 0.37–1.27: 30 min: 1.56 60 min: 1.6 ...300 min: 0.37
I have a glucometer... I check regularly and recently got a new one. I can't seem to catch a consistent pattern in my readings—whether it's fasting, before meals, or 2 hours after. Just doing those standard diabetic checks, my fasting goes from 3.6 to 8, my 2-hour post-meal is between 3.2 and 13.2, and random checks also swing between 3.2 and 13.2. I’ve noticed that whenever I eat something poorly, I get incredibly drowsy—to the point where I feel like I might actually pass out. My GUK sits around 3.2–4.5 during those times... and once it hits 4.2, I get so sleepy that I just drift off.
Right now, I’m following a pretty disciplined diet, much like the nutritional guidelines you'd find in a standard American medical textbook. The moment I have something sugary, like a juice, I get this awful, lingering taste and smell in my nose, mouth, and even my urine... it even happens with bananas. Once, I had three Nabisco wafers, and the sensation was indescribably unpleasant.
Regarding ketones in my urine, some say they aren't a big deal since my OGTT results look fine. That reading of 35 was likely because I was fasting that morning and strictly adhering to my diet. Usually, my ketone levels stay within the normal range, even when I'm struggling to keep food down due to MTC-related nausea!
Honestly, I have no idea what’s going on with my body. Yesterday, I had a single Corny bar for breakfast, and immediately afterward, I felt nauseous, smelled acidic, and experienced blurred vision.
You might want to ask God what the "father of psychoanalysis" was actually getting at... He isn't necessarily lying... It just makes it seem like this entire forum is built on nothing but falsehoods... And if you go through all that effort to research things like Neurobion... only to find out he was just messing around or pulling your leg... Moving away from the topic for a second... But that trampoline analogy actually gave me a great idea... It's like kidney stones... they keep forming up, and they simply have to find a way out...🙂
Personally, I don't think hospitals should have designated smoking areas at all... Eating, drinking, and using the restroom are necessities... but smoking isn't. It’s hard for me to wrap my head around why hospital staff would be allowed to smoke on the premises. They can certainly do so during their breaks, but while they are on the clock? Not in a hospital, and honestly, not anywhere else either.
Now, moving on to another topic... The whole "alcoholics and addicts" debate... I can only sympathize if someone was coerced or manipulated into that lifestyle against their will... Otherwise, this idea that they are just "fragile souls" or overly sensitive... what, are we supposed to be made of stone? Do you think we don't have emotions or that nothing ever hurts us? At some point, there is always a choice to be made... eventually, you decide.
Even my husband wouldn't foot an endless bill for medical treatments... he feels like once you hit three times the insurance limit, that's it. You simply won't keep spending money indefinitely.