Sara
@SaraAna66550269
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Mom, Wife, School Counselor, Christian. Previously fit and healthy 43 year old until I contracted “mild” Covid on August 2021. #longcovid
Central Coast, California
Joined November 2021
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1/4 Update! I’ve been hesitant to post because there is still fear of relapse/crash, but wanted to share to offer hope.
#LongCovid
crash free since February. Danced at a party, snorkeled in Cancun, went wake boarding (although I couldn’t get up), doing Pilates 2x a week.
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What I’ve been told by Neurologists because my labs, scans are normal after 17 mo of
#longcovid
. “Have you thought about any childhood trauma that could be causing your slurred speech, sezuire-like episodes?” “Do you use a scooter b/c you are anxious in the store?”
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1/2 Update!
#LongCovid
since 2021. If you’ve been following my story, basically I’ve had almost every LC symptom, hospitalized 10 days, in bed for 5mo, and at the 17mo mark, I still needed a scooter for most tasks outside my home (grocery shopping etc) and had a TIA.
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Update: after reading my
@UCLANeurology
notes from yesterday, I was diagnosed with Ataxia Abasia Gait….aka “Fear of Walking”. You can’t make this stuff up! After 16 mo of
#longcovid
walking difficulties, that started with the virus, this is my diagnosis! I’m speechless.
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After 22mo of
#LongCovid
I am finally strong enough to blow dry my hair instead of just wrapping it wet in a bun. Before that, I didn’t even have the strength to shower. And my eyes can fully open without feeing dizzy. Feeling so thankful for the little things….
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2/2 I took Maraviroc/Pravastatin/Colchcine for 7mo. Been off meds 3mo. Still have mild POTs symptoms, managed with Propranolol. Still eating a gluten/sugar free diet. Haven’t had a crash in 2mo, so starting back at 20min of exercise 2 wks ago, keeping my heart-rate under 100.
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1. Well I’m officially done with going to Neurologists for my
#LongCovid
issues! I waited 6 months to see the 1 neurologist at UCLA who “specializes in LC”. The 1 neurologist that the LC clinic refers all patients to and has seen 300 patients so far.
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This has been one of the hardest
#longcovid
symptoms for me over the past 18mo since getting sick. Been to multiple neurologists
@UCLANeurology
. They say my walking issues are due to stress, anxiety, depression. All of which I do not have. “Fear of walking.” “Fear of falling”.
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#LongCovid
Update
I’ve been hesitant to share my progress because there is a real fear that I may relapse again like I’ve done in the past. LC symptoms are such a rollercoaster! But I’ve been doing well for 2 months, so I wanted to share to give others hope! 1/5
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#LongCovid
update! After 21 months of LC, I have finally started to exercise again. My husband bought me this outfit a year ago, but it sat in my drawer and made me sad. He had faith that I would get better one day, even though I didn’t.
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I was told that all my labs were normal. Doctors told me I had Somatic Symptom Disorder (over-exaggerating my symptoms/hypochondriac) Then, I had these cytokines drawn. This is not normal!!! 15 months of
#LongCovid
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6. I have no idea why I keep giving off the anxiety vibe. Maybe it’s b/c I’ve been dismissed so many times, waited for 6 mo for an appt, drove 3 hours to get there desperately seeking answers and the neurologist is focusing on migraines and anxiety to explain away my symptoms!
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Horrible experience at
@UCLANeurology
today! Since all my scans and labs were clear, neuro said my symptoms (difficulty walking, slurred speech, dizziness) were functional, not neurological, not related to Covid. Asked me if I was anxious before walking. Really?!?!
#longcovid
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11. So, this is the end of my journey for answers and help. Just going to focus on living my best life with my new disability. Trusting God that my legs will be healed one day. Until then, I will forgive all the docs who have dismissed me, for they know not what they do.
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8. Words can’t even express how frustrated and sad I am that 4 neurologists (including 1 who supposedly specializes in LC and yet seems to not know that LC can cause balance and walking issues) have attributed my symptoms to a non-existent mental health issue.
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I’ve been sick with
#LongCovid
since 2021. I can no longer:
-walk through a grocery story
-exercise
-hike, ski with my family
-vacuum/mop my house
-coach my children in soccer
-work in-person
-dance @ a wedding
-play piano/sing
@LCDCmarch15
#LCDC
#LongCovidAwarenessDay
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@drclairetaylor
I was told that all my labs were normal. Then, I had these cytokines drawn. This is not normal!!!
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This is
#LongCovid
through the eyes of a child. My birthday was last week. And this was my sweet card from my son!
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15 months of twitches, involuntary movements, difficulty walking and seizure-like activity. 2 hospitalizations. 1 TIA. 5 of 15 months spent in bed. 3 Neurologists, including
@UCLANeurology
say it’s FND. No more excuses for Drs that don’t recognize
#LongCovid
Neuro symptoms!
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7. I’ve had over 50 LC symptoms since getting sick in 2021. I’ve had difficulty walking and balance issues for 18mo. My life has been ruined! I cannot walk through a grocery store, can’t run with my kids, can’t even go on a walk with them!
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4/4 Excited to hear that there are trials coming up at Yale,Mt Sinai, Vanderbilt for Maraviroc, Truvada, and other antivirals and immunomodulators for
#LongCovid
Let’s go!!!!! Antivirals and immunomodulators need to be available to all longhaulers!
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9. I asked the doc if she had seen a LC patients with walking balance issues and she said no. She has seen patients w/Tremors but none with Chorea or Gait/Balance issues like me. So tremors are not psychological, but Chorea and Gait are b/c she hasn’t seen them before?!?!?!
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#LongCovid
is now being called a “neurological disease”. Who is going to tell all the neurologists? I haven’t met 1 yet that understands this. Seen 4 since 2021. Still using old algorithms that do not include LongCovid, and diagnosing anxiety, FND, etc.
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3. Everything else was negative. She focused on my history of migraines to explain away most of my LC symptoms (seizures, blurry vision, sensitivity to lights/sounds, unable to watch tv, etc). She didn’t seem to think COVID could cause these or see LC as a neuro disease.
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Happy Mother’s Day to all the moms with
#LongCovid
that have been parenting mostly from bed these past 2-3 years. You are some of the strongest mama’s I have ever known!! You are warriors. Your children are blessed to have you in their lives.
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This is my 2nd Christmas with
#LongCovid
. Very thankful that on both times, Christmas fell on a “good day”. There have been many bad days, weeks, months over the past 2 years. But I’m hopeful for a cure, and thankful for the good days! Merry Christmas!
#longcovid
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4. Then she focused on anxiety. Kept saying that I appeared anxious, that I should try medication. Said that my tests didn’t add up and that my difficulty walking and balance didn’t match the fact that my muscles appeared to be strong.
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10. So I was again referred to PT and Psychiatry (with no screening for PEM even though I’ve been in bed for 5 months out of 18, and I’ve already been screened by a psychiatrist and have no anxiety).
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1/2
It’s been quite the journey since 8/2021 when I got sick with
#LongCovid
and my life was changed forever. Now out of bed, back to work, finally have my life back. And even went to a Cancun for a wedding recently. But I still miss the old me…..
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I think I have tried every supplement during my 18 mo
#longcovid
journey. But this is the first supplement that I noticed a change. It’s liquid glutathione. Helps with fatigue. Warning: it’s pharmaceutical grade so it’s not cheap. But cheaper than IV Glutathione and lasts longer.
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#LongCovid
community? How do you respond when a neurologist tells you that long COVID symptoms are functional, not neurological?
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Anyone else with
#longcovid
feel like they are constantly eating/drinking or they feel nauseous, like they will pass out? Almost like my blood sugar is low, but I’ve had my sugars checked and everything is fine. I literally bring food everywhere!
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Two years ago I didn’t know what
#LongCovid
or
#Dysautonomia
or
#POTS
was. But I did know that eating salt really made me feel better and helped me from passing out.
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2. Let’s start with the positive. She did a 1 hour exam on me and found that I still had cognitive issues (Ex: word find, not knowing the date/time). She referred me to neuropsych testing to test for processing speed and speech issues.
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5. She said that I had a fear of falling and that seemed to make my symptoms worse. (The last neuro I saw said I had a fear of walking through the store!)
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Wherever you are on your Long COVID journey, please know that there is hope. People who know me well keep commenting that my smile is finally back:) 5/5
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@nataliesurely
Your opinions about symptoms being psychosomatic are not based on current science. You didn’t consult experts on LC, just doctors who misdiagnosed LC patients w/FND. Interview these experts before you cause more harm.
@PutrinoLab
@resiapretorius
@microbeminded2
@VirusesImmunity
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3/4 Took Maraviroc/Pravastatin for 3 months. Then Maraviroc/Pravstatin/Colchcine for 10 months. Still experienced crashes after stopping, but
@brucep13
said my immune system may just need time to regulate and he was correct. No crashes since February. Off meds for 1 year.
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@cobba27
I hope that you find one that listens. If not, please know that long COVID is not a disease that they learned about in medical school. And most are not interested in it or learning more. If you can find an infectious disease neurologist or LC clinic that is best!
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@transgemder
He literally was asking me if my difficulty walking was due to anxiety. No, you moron! My legs are weak from the virus. I don’t care if the scans aren’t showing something. Something is wrong!!!!!
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#LongCovid
update
It’s been 3 months since my last crash. Not on any meds. Not taking any supplements. Eating super clean (no sugar/no gluten). Drinking 1 cup of Matcha tea in the morning and water the rest of the day. Just experiencing LC mild symptoms…no fatigue. Pinch me!!
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@CovidSolidarit1
I was thinking that too. Maybe the director of the program. But now, I’m just tired of fighting for validation and help. I’m done.
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#LongCovid
PEM crash is over. 4 days in bed was not fun! Started w/stroke-like symptoms (numbness in arm/hand, high BP, felt like I was going to pass out, shortness of breath, slurred speech, loss of coordination, confusion). Minimal crash compared to the 2mo in bed last fall.
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Trying to give
@grace_huckins
some grace today. But after 22mo of battling
#LongCovid
it’s hard to see articles like this when each day is such a struggle to survive: Wish she could spend a day in my shoes. I don’t think she’d have the same perspective.
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Maraviroc and Pravastatin cured 90-95% of my LC Symptoms! United Healthcare refused to pay for Maraviroc since I don’t have HIV. It is $1500 a month and there is no generic. This drug needs to be available to all long-haulers at an affordable cost now!
#TreatLongCovid
#LongCovid
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@brucep13
@YoDoctorYo
Your team has saved my life! I was hospitalized for 9 days with seizures, shortness of breath, muscle weakness, low pulse, and the inability to move my legs or speak. And then came 100+ LH symptoms. After 5 weeks on your protocol I have my life back!
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What are
#LongCovid
tremors being diagnosed as FND? This is infuriating and exactly my experience at UCLA neurology. LC neurological symptoms are not FND. The rates of FND are soaring right now. Psychiatry and PT is not the treatment for LC tremors.
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2/4 Still experiencing slight vertigo and slow coordination. Mild word find issues. Mild executive function issues. Able to work from home, go grocery shopping by myself (couldn’t do this for 3 years due to balance issues and sensory issues).
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@TimC_syd
@UCLANeurology
I completely agree! How can a doctor say that loss of smell and brain fog (aka cognitive dysfunction) is
#longcovid
but if you are also experiencing twitching and difficulty walking post-covid you’re just anxious! Clearly there’s something wrong in the brain/nervous system!!!
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Possible mechanisms of
#longcovid
@UCSF
New research now validating what
@brucep13
found 2 years ago!
1. Viral persistence (spike protein)
2. Inflammation (cytokines)
3. EBV reactivation
4. Gut microbiome
5. Microclots
6. Autoimmunity
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@drclairetaylor
Thank you so much! I have been told by multiple doctors that my LC symptoms are a functional disorder & my SOB is anxiety even though the symptoms began during my COVID infection 15 mo ago. I have cried more b/c of the way I’ve been treated by Drs than from my loss of mobility!
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I’ve been on Maraviroc/Pravastatin/Colchicine for 7 months. When I started the meds I was bedridden with fatigue, SOB, palpitations, slurred speech, seizure-like episodes, slow/heavy legs, twitches, vibrations, light sensitivity, balance issues, dizzy, brain fog, lightheaded. 2/5
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It took approx 3-4 months to notice any positive change. But then I slowly progressed and symptoms went from severe, to moderate, to mild, and then disappeared. These have been the hardest 19 months of my life. But I’m beginning to have hope that I am healing. 4/5
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@DrJohnHhess
Yes. Brain fog is one of the top 5 symptoms of
#longcovid
. I am 44. Previously healthy. Mild COVID in Aug 2021. Now, I cannot give directions to my house. And cannot order for myself at a restaurant. Difficulty with executive functioning. I have a Masters degree.
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After 7mo of these medications, I am back to work and just took my 4 kids on a vacation! My balance is still off and my legs get wobbly with too much motion around me. I cannot walk up/down stairs. Cannot watch moving screens.
But, the rest of the symptoms are gone! 3/5
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@DrEricDing
@thephysicsgirl
This is my story as well. I’ve spent 5 out of the last 22mo bedridden with LC. No help from local doctors. LC Clinics offer support but no treatments. Many of us were active with no preexisting conditions before getting ill. We are too sick to advocate for ourselves.
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3/3 But I remind myself where I’ve been (over 50 LC symptoms, in bed, unable to walk/breathe & thinking I was going to die in my sleep).
So I am thankful to be alive and to have my life back. And pray one day that I, and every other patient with
#longcovid
will be 100% healed.
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@SavingBooks
Thanks for sharing! My neuro said that COVID did not cause my symptoms and asked me if I had thought about childhood trauma that could have caused my seizure-like activity and difficulty walking. He said he has not seen nuero symptoms post-COVID. Said I had FND. Never went back!
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1/2 I honestly can’t believe doctors are this ignorant…..it’s
#LongCovid
vasculitis! persistent virus and S1 causing inflammation of the blood vessels! Not anxiety, you incompetent researchers!
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I’ve been doing Pilates 30min every other day for 2 weeks and no crashes! 7 months on Maraviroc/Pravastatin/Colchicine. Also on Propranolol and Amitriptyline (migraines). No more heavy legs, cognitive dysfunction, wobbly legs, slurred speech, palpitations, or bed-bound fatigue.
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@DaniBeckman
When I got sick in 2021, I felt the virus go straight to my brain. Extreme dizziness, vertigo, muscle weakness, couldn’t swallow, seizure-like activity. The ER docs thought I had been poisoned because I didn’t test positive until 5 days later. Now over 2 1/2 years of LC.
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Need
#LongCovid
headache advice. This is my most debilitating symptom right now. Burning pain around head. Achy neck and shoulder muscles. I’ve tried…
Amitriptyline
Immitrex
Excedrin Migraine
Nurtec
CBD
CBD w/TCH
Tylenol
Motrin
Sudafed
Ice hats
What is working for you????
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@byeverhopeful
I’m so sorry 😢 I seriously cannot believe this is happening. They are not psychiatrists!
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@AbraarKaran
I was one of those patients….bedridden after Covid for months. Couldn’t walk. Thought I was going to die in my sleep. PCP told my husband I needed therapy. ER docs said Somatic Symptom Disorder. Neurologist said I had FND and asked me I had experienced childhood trauma.
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@ann_mcnitt
I had a TIA after 15mo of LongCovid. I’m not necessarily young (44), but was in excellent health post COvid. Low blood pressure, low cholesterol. No preexisting conditions.
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@dysclinic
During my Covid infection in 2021 I had a completely neurological response….difficulty swallowing, no taste/smell, seizures, vertigo, extreme weakness, SOB w/normal 02, 39 pulse. After 10 days, hospital Neuro said FND unrelated to Covid, & asked if I had childhood trauma.
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@FilmandTVMania
Hi Amelia. I went to USC and UCLA LC clinic. They were supportive, but offered no treatments. I understand. Dr Bruce Patterson recommended the 3 meds based on my labs. And I had to find a local doc willing to prescribe. DM me if you have questions!
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@ke_lin_
Sounds have dysautonomia (POTs) from COVID. Demand to see a cardiologist and ask for a tilt table test. A beta blocker can help. Also IV fluids, electrolytes, IV Benedryl. It took 3 ER visits for me to finally find a doctor who knew about POTs.
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I was fearful that my body had lasting damage, but for me, it must have been just S1 persistence, immune dysregulation, and inflammation driving all my symptoms. Still fearful of rebounding. I’m still on meds, but tapering. Thank you
@brucep13
for giving me my life back twice!
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@SeanSalai
@WashTimes
I am 44, no preexisting conditions, do not smoke or drink. I have been sick with
#longcovid
for 18mo. 5 months bedbound. Please research the mechanisms of “so-called LC” before gaslighting patients. Stanford/Yale are trialing Paxlovid and autoimmune drugs for us for a reason!
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Neurologists have been the worst for
#LongCovid
patients! History will not forget this! Many unknown diseases were called “hysteria” in the past before biomarkers were found. How many longhaulers have been misdiagnosed with Conversion Disorder or FND?
How can people help other people if they don't know how?
I am scared. This doctor actually said I have conversion disorder!!!!!!!!!!!!!!! Where are the advocates?! I need one. I cannot verbally express myself well at the moment and am getting taken advantage of.
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@EricTopol
Why is the US still allowing patients with
#LongCovid
to donate blood? The UK doesn’t allow it. Not that we have the energy to donate anyways, but if it can happen to mice, I would feel terrible knowing that I gave another person my LC symptoms !
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@PutrinoLab
I was one of those patients…bedridden, abnormal movements….told my multiple neurologists that I had FND (conversion disorder), and Somatic Symptom Disorder (hypochondria). Barely surviving, an old life gone, & then being gaslit is what drives
#LongCovod
patients to suicide.
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Does anyone with
#LongCovid
get temporary paralysis of the diaphragm? I get episodes of shallow breathing where I cannot talk and can barely breath. It lasts about 5 minutes. It ends with a HUGE breath in and then everything resets and works again. Autonomic dysfunction?
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@celinegounder
Most LongCovid patients being treated in clinics currently are female, 30-50, no preexisting conditions. And this cohort isn’t eligible for Paxlovid. I have been sick for 18mo. It can happen to anyone.
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@dysclinic
This happened to me as well. Called in the shrink! Asked about childhood trauma that could be causing my symptoms. A few months later, I did go to another ER again. A female doctor noticed Dysautonomia/LC right away. Got me on a saline drip and IV benedryl to stop the movements.
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@CureLongCovid
Yep, a local PCP told my husband, “Do you both really still think she has LongCovid? I think she should follow up with the FND diagnosis.”
I was so proud of my husband when he said, “Thank you but we will listen to the experts at Stanford and UCLA who say she has LongCovid.”
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Could this explain why my left ear has been clogged since getting COVID in 2021. And the whooshing sound like a sprinklers going off in my ear. And balance issues, dizziness, altered gait too? Crazy to think the virus infected the ear!!
#LongCovid
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#LongCovid
Update: 3 months on Maraviroc/Cochicine/Pravastatin
Better- Fatigue, Palpitations, Heavy Legs, Dizziness, brain fog, slow walking, slurred speech
Same- Headaches, clogged ears, shortness of breath
Really hoping I’m turning a corner and not just in between cycles!
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#LongCovid
#PEM
crash. 2nd day in bed. How many more? Not sure. Heavy limbs, SOB, aches. This is a cruel disease. Maybe I did too much socializing on Thanksgiving… not sure what triggered it. But haven’t been down like this in a long time. Missing my boys soccer games today:(
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My story….
#longcovid
„
#LongCovid
: I collapsed in my living room unable to breath, and have t been the same since. I have difficulty walking, slur my words, twitches, and am constantly dizzy. Daily headaches and pain. My legs feel heavy. …“ -
@SaraAna66550269
1/3
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@IppokratisAnge1
So true! I am not necessarily young (43), but I had no preexisting conditions, was in good health, and worked out 2x a week. Yes, no one is spared.
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@vijayiyer312
Love this! My husband said something similar. He told me to tell them that I wanted to reschedule my appointment, refund my $, and we will meet again after he researches LongCovid.
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@guardian
Love how the experts are all psychiatrists, not immunologists and/or virologists. The majority of ME/CFS patients have viral persistence.
#LongCovid
has hopefully opened the eyes of these people trying to push exercise and CBT as treatments. Won’t work, doesn’t work, tried it!
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@ChrisAlvino
When my LC was really severe I would have died in bed if there was a fire. So weak I couldn’t feed my self. Now, it’s more mild. brain processes super slow. I stay away from things that are too visually stimulating. My brain gets stuck scanning and I lose my ability to speak.
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@DianeOLeary
@CNN
Thank you so much for writing about this! I was hospitalized for 10 days with a pulse of 39, severe shortness of breath (normal O2), dizziness, couldn’t swallow, seizure-like activity. COVID positive day 5. Referral: Psychiatrist. Male docs asked if I had past childhood trauma.
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Recent labs from
@IncellDx
…..spike protein, monocytes, & cytokines!
On Maraviroc/Pravastatin/Colchicine.
Out of bed! 50% improved. Cytokines decreasing.
2 infections, 16mo
#LongCovid
Thankful for
@brucep13
& team for not giving up on me!
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Well, clearly my body cannot function without immunomodulators. Started tapering meds and exercising (just 20min every other day), and now I’m back in bed. Back on Maraviroc/Pravastatin/Colchicine. Added Glutathione and Alpha-Lipoic Acid.
#LongCovid
took away my smile again:(
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@StevePhillipsMD
Thank you for this. It’s still hard for me to let go how I have been treated over the past 2 years with Long Covid. As I lay in the hospital bed struggling to breath (but 02 was normal), slurring my speech, doctors were telling my husband I needed to see a psychiatrist.
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@zalaly
@JAMAInternalMed
@Biostayan
@TaeyoungChoi93
This is great news, but the people who have LC are mostly women (ages 30-50) w/no preexisting conditions. We don’t qualify for Paxlovid. So the group that would benefit the most, and keep more people from getting LC, can’t access.
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@richardemoe
@AlisaValdesRod1
@brucep13
@YoDoctorYo
Great recommendation! Dr Patterson and his team gave me my life back. I highly recommend. These were my symptoms just a few months ago……after 10 weeks of Dr Ps recommended meds, I am down to only a few, manageable symptoms.
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Now that they are calling it “Post COVID Neurological Syndrome”, and recognizing that it mimics stroke-like symptoms, maybe Neurologists will stop with the gaslighting and FND diagnosis's and actually start listening
#longcovid
Post-COVID-19 Neurological Syndrome impacts many with
#LongCovid
and includes disabling fatigue
Symptoms of PCNS mimic some stroke symptoms and younger adults seem to be at particular risk
Better understanding of PCNS is urgently needed
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#LongCovid
brain fog….by the time you wrap a present you forget what was inside and what to put on the tag.
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I’m not a Dr, but I’m assuming that PT and Psychiatry won’t fix infected brain cellls!
#LongCovid
neuro issues aren’t “functional”. Let’s get the memo out to Neurologists to stop the psychiatric and PT referrals for patients with PEM and Neuro issues!
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Yes, neurologists have been the worst at gaslighting
#longcovid
patients. Put Somatic Symptom Disorder on my chart (pretty much saying I was over exaggerating my symptoms). Told me nothing was wrong with me b/c scans were clear. Told my husband that I needed therapy.
#LongCovid
''After each neurologist appointment, she’d recount her experience of being dismissed. “They think I’m depressed. They say nothing is wrong. Maybe they’re right. Maybe I’m just crazy.”
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Today is
#LongCovidAwarenessDay
. I have had
#LongCovid
for 20 mo. I miss baking for my family, singing, playing piano, walking around amusement parks, skiing, doing adventurous things with my kids. Now, I can’t even walk through a store w/o being short of breath and heavy legs.
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@ahandvanish
@julialmv
@LisaAMcCorkell
@EricTopol
Thank you! And love the list of meds and supplements that help. Maraviroc/Cochicine/Statin has helped me too. Nice to NOT see Xanax, Psychiatry, and PT on the list! That seems to be all neurologists have been suggesting lately for us. Hoping this empowers docs to try something!
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