Hi all! Previously I was diagnosed with seborrheic dermatitis. However after several dermatologist visits & trying the expensive prescribed shampoos and scalp oils the dermatologist informed me that the extremely dry, dandruff, and something that feels like a combination of sand and grains of salt was coming from somewhere else other than my scalp. The dermatologist also stated that these were only sensations. In my opinion it is much more than sensations. This stuff is actually coming out of my pores. More so when I force it out by squeezing or scratching. It has consumed my entire body, from scalp to bottom of feet.. This is driving me crazy. I spend most of my day and most of my night pushing, scratching this mess from under my top layer of skin.
Does anyone think that this is a part of PBC or could it be something else. I was just recently diagnosed as having PBC.
Thanks in advance for your response..
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kathjean
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Poor You, it must be awful, I'm very sorry for You. Surely it can be of PBC. Sg good: if this sympthom you have so strongly, there is a chance, that some of also not pleasent sympthoms will not visit You. Keep better!
sorry I cannot help you with this problem. my daughter has psorisis (excuse spelling) but that is all on the outside of her skin. Hope that you get sorted out soon. Take Care.
I think I would go back to the dermatologist and show him what happens if I was you. He might be able to send some of the stuff that comes out off for analasis and get you some answers. its not something that I have experienced but for your sake needs sorting out.
I have this too, 6 dermatologists (at 180 a pop, my insurance won't cover it) and most will not even look at any matter you have collected, 3 have told me I am doing this to myself...I have yet to meet a dermatologist who's salary is justified.
I have other health problems that will be resolved hopefully within a few months, I was given both HepC and MRSA during chemo for late stage cancer (clinic re-used chemo port access needles, hard to believe but true). I hope to rebuild immune system somehow...MRSA is now silent and I begin treatment for HepC and perhaps after that my body can fight this.
The reason I responded to your well meaning comment is that a dermatologist is about the worst thing you can do, despite HIPAA laws, they do communicate with one another about their patients, now each time I see my PCP, cardiologist, oncologist, etc, the first thing they ask is ''why haven't you made/kept appt. with a psychiatrist?'' My answer: I have a counselor I talk to regularly (bi-monthly now, weekly thru chemo), there is no evidence that I have any depression issues.
PCP wants to drug me out of my delusions re my skin, she at least will come out and say it. Perhaps after Hep is gone (along with the skin distress it brings), MRSA is in check, if this persists, I may take the drugs....just so I can pretend it isn't happening, like a dozen doctors.
So wonderful to find others who are having similar experiences. I have been getting debris out of my eyebrow. I believe it comes from a fall that I had, when I was a little girl. I had a chair, that had 2 holes in the "straw" seat. I put my legs into the chair...started walking back and forth in the hallway. My mom didn't have a gate on the stairs ( we lived in Navy housing, it was a townhouse). I decided I could go down the stairs...
They sewed me up without cleaning it.
Then I ended up with an abusive husband, who hit me. And if that's not enough, I fell asleep in 1988, in the sun, and sand. I woke up, with 2 ND degree burns...and sand embedded in my face. Many years past, and when I turned 50, the hot flashes, started... My face started to swell up, I have been getting many items out of my skin... Last October, I got a big piece of straw out... It is very painful, I keep getting myrsa... I have ingrown eyebrow hairs... I get pieces of sand, hard substances out of my face. They tried to make me go to a psychiatrist..I don't even think my family believes me .. it is very upsetting. I finally got a Dr, to agree to an ultrasound, the CT scan, shows a cyst wall... They referred me to a plastic surgeon... So I will keep you posted...
Hey, I have been fighting dermamites for months and bern told it was rosacea. I know wth I got I know my body and my skin and the symptoms. I to have salt granules coming out of my skin on my face where I sweat the most . I started drinking alot more water and we will see if that is what the problem is. The granules are shiny in my skin once the spots are opened where the dang mites are. They have made my life a living hell. Anyway I just w as noted u to know your not crazy and I'm not either. They say is depression and I am only depressed because there is an infestation of mites on my face and stomach and breast. Its absolutely horrible. I can go about 2 weeks with them under control but then it starts all over again. Hope this helps
My daughter has psoriasis too and recently after researching something for her, I came across something else which is the dermodex mite..... I read about this women who said she was losing a gritty sand type stuff from her scalp her dermatologist said it was nothing... but a second opinion found the dermodex mite which in certain illnesses can apparently get out of control and cause this symptom. It might be worth asking your dermotologist about this as it sounds similar to what you have?
Oh wonderful EAJSWW. Thank you very much. I will check dermodex out and consult my dermatologist.
Had my first CT liver biopsy this morning. All went well and the people at the hospital were wonderful. Now waiting to see what my gastro doc's findings.
I have been having the very same symptoms and I keep getting put off by Doctor"s also not knowing what this is. It's crazy because,these things I describe as salt grains itch that when I dig them out I find somewhat relief but they are all threw my skin from the top of my head to the very bottom of my feet. I am wondering if you found anything out.?
Hi there sorry to say but I think I'm going threw what you just explained. For the past 3yrs I have been seeing different Doctors,had lots of blood test done,went to see two Dermatologists and still nobody can explain what I'm going threw. I have those salt grain things all under the top layer of my skin from head to toe and also coming out from every hole inside out. They sometimes itch that it feels like they are buying or crawling sensation and it drives my Insane not knowing what is going on and that there isn't a Professional yet that I have seen experienced enough to understand what is going on. I had an endoscopy done and found out I have Esophageal Candidiasis however I been treated with an antibiotic but that has not taken the other symptoms away that I'm experiencing. I also been diagnosed with having Anemia since then and my Immune System is not helping me. I bow my nose all day and night,caught and sneeze more then I ever had since this happened. I'm at my witts end and need answers. I hope things get better very soon.
Sounds exactly like an overgrowth of demodex. There's a wealth of information online but doctors won't help much. Get on an antifungal, internal and external, avoid sugars and do what you can to bring your immune system up. Tea tree oil and a high quality probiotic will be your best friends.
Hey there kathjean..I just liked that up and its nothing the same what I'm experiencing. I am going for blood work again next week because I've been through all skin test and they did not find any mites. It sure is a mystery but thank you for your feedback..much appreciated.
(A comprehensive list of symptoms compiled from first-hand input and a consensus of sufferers.)
You - or someone you know - may have Morgellons Disease and not realize it yet.
Morgellons symptoms fit into many other illness profiles. They may appear slowly and take years to culminate into full-blown Morgellons Disease. And symptoms may occur intermittently over time, appearing to go into remission and then resurfacing.
Symptoms are often rationalized as being "nothing," thoughtlessly disregarded or misdiagnosed. Even worse, victims are placed in the diagnostic category: Delusional Parasitosis.
It is believed that pets also get Morgellons, exhibiting many of the same symptoms as humans, which are sometimes fatal.
For the most part, medical professionals and veterinarians are unaware of Morgellons. At present, no official diagnostic code exists for insurance companies. Research is currently under way. Labs are soon to report in-depth results of their findings.
As grassroots awareness continues, it is sadly inevitable that many more sufferers - both human and animal - will surface. And that's the hairy, 800-pound gorilla in the room.
Our comprehensive symptoms list is compiled from first-hand input and consensus of sufferers.
Morgellons Disease Symptoms List
Head
Bumps, lumps, lesions or "channels" on head
Headaches
Brain and Personality
Memory loss (short term, recent memory - "What was I saying?
Where did I put my coffee mug? What did I do yesterday?")
Brain fog - groggy, unclear thinking
Thought processing becomes very taxing, difficult
Unable to think of specific words when communicating
Writing, and especially spelling, becomes difficult
Inability to focus or concentrate - ADD/ADHD symptoms
Mood disorders and mood swings, including loss of temper
Libido - lack of
Loss of interest in things that normally interest you
Depression and/or confusion or disorientation
Personality changes, like loss of creativity or loss of existing skills
Neurological problems - clumsiness, stumbling while walking, impeded speech
Hair
Hair appearance - stiff, brittle and dry
Wiry, uncontrollable hairs replace normal hair
Hair texture and color may change as more "wiry" ones grow in
Hair loss
Small glob of clear sticky substance at root end of hair when it falls out,
substance may coat hair shaft
Hair color does not adhere well to new hair growth
Eyes
Floaters on eyeball surface
Loss of visual acuity
Increase in discharge, often stringy
Sandy or gritty feeling in eyes
Feeling of foreign objects in eyes but cannot locate or remove
Eyes are extra-sensitive to light
Eyesight is generally weakened
Night blindness
Eyelashes fall out, may be replaced with thick, wiry discolored lashes
Ears
Ears itch as motile fibers move inside
Ears ring or beep (but ears are clean)
Ears become clogged due to sinus drainage
Ears develop excess thick hair which may emerge from inside ear and feel very deep-rooted
Nose
Allergies or sinus problems - excessive congestion, mucus production
Mucus is thick, stringy, cohesive, dries into very hard substance -
almost glue-like
Scents are not perceived correctly, may fluctuate from keen sensing ability
to no ability to perceive any scent at all
Nostrils develop excess thick hair
Nostrils develop very sore pimples
Mouth & Throat
Teeth become sensitive, crack, chip, feel like they're becoming hollow
Teeth become loose and/or fall out
Sore or tickling throat
Hacking cough
Constant sinus drainage
Glob of congestion always hanging at back of throat
Taste buds malfunction, may fluctuate from keen tasting ability
to having no taste perception at all
Skin
Crawling feeling on the skin, like invisible bugs
Pinching, biting, stinging or prickling on the skin
Lesions - itchy, sore or painful, very slow-healing with little or no infection,
sometimes containing "fuzz"
Crusts/scabs/callus-like formations on lesions - painful and difficult to remove because of
tentacles clinging to flesh
Open cuts or wounds - very slow healing with little or no infection, sometimes containing"fuzz"
Objects described as "granules," hard and crystal-like, similar in size and shape to sand grains, can occasionally be removed, or can emerge from either broken or intact skin
Objects described as "shards," hard and crystal-like that are similar to glass that emerge from skin
Black seed-like "specks" or "dots" on, or in, the skin or emerging from lesions
Tiny "fuzzballs" in the lesions, emerging from lesions, and on (or falling from) intact skin
Black tar-like substance coming from skin pores
Skin texture - leathery, callus-like areas often where lesions had previously been located
Growth of new wiry or thick hair over the top of where lesions had previously been
Pimples - sore, long-lasting, can't squeeze out - contents are removed in same fashion as a splinter and are moist but cohesive
Rashes - unusual, appear/disappear rapidly for no apparent reason, also appear where adhesive portion of Band-Aid is applied
Skin pigment changes (gets lighter or darker, more difficult to see in fair skin tones)
Stationary or 'creeping' worm or wire-like structures can be seen just beneath the skin surface
Skin loses its elasticity and appears to sag, especially when warm, less so when cold
Body
Cannot sense temperature of water - water is very hot and it is not recognized
Alert!! This is very important if you have young children or animals that you bathe.
Alcohol/liquor intolerance
Appetite decrease or increase
Weight loss or weight gain
Food cravings or total lack of interest in food
Gastrointestinal problems
Swelling or edema, including breast edema, feet especially known for swelling
Back ache - lower back
Back pain - neck and shoulder pain
Chronic fatigue - total exhaustion, physical depletion
Insomnia during nighttime, or sleep abnormally long amounts (day and night)
Weakness - strength diminishes
Bloating
Joint pain
Muscle twitching or cramping
Dizziness, disorientation, vertigo
Seizures
Blood pressure problems (high or low)
Heart races or beats irregularly for no apparent reason
Liver problems
Abnormal overheating as well as temperature loss problems
Excessive sweating
Cannot stay in sun for prolonged periods without becoming ill
Drastic body temp fluctuations
New, normal temp runs lower or higher than your previous "normal"
Bowel habits change, loss of muscle control
Stools contain foreign-looking matter
Urine has foreign-looking matter (particles or black seeds, hair -
sometimes encased in mucus-like substance)
Incontinence
Immediate pain that occurs simultaneously to untouched lesions on other parts of the body
when another lesion is disturbed
Hardened splinter-like material beneath skin that is difficult to remove,
extremely painful, and odd in appearance once removed
Ingrown hair that is difficult to remove, extremely painful
Hair strands that are unusually thick or doesn't look like other hair
Fingernails change shape and/or texture
Fiber or thread-like material emerging from the skin, or visible just beneath the skin - may be
black, white, tan, clear, red, blue, or rainbow colored. Some fibers may exhibit movement.
Lyme Disease shares overlapping symptoms and the borellia bacteria with Morgellons Disease (applies to human and animal lab results)
* Debris from beneath nails contains fibers
* Microscopic inspection of debris that has collected in hairbrush
"This is not meant to diagnose or treat the 'syndrome' called "Mogellons Disease". Current International Code of Diagnostics (ICD) has not assigned an ICD Code to this modality."
late response but i had to reply.I have been strugleing with the same symptoms now for 2-3 years. A bit about me .
Female 34yrs light to medium skin tone .I have
autoimune issues Hayfever,ashma and mild eczema ,possible candia, Keratotis pilarsis on arms legs thighs hips bottom .
mental health
~ Diagnosed bipolar 2
life time suffering from dermatilimania (skin picking)
pick,pull,scratch,squeezing and hair pulling that started at 11 now 34 massive struggle .medications
Lithum 450mg. and birth controll pill.I have extremely dry skin but is filled with debris my skin picking has become my obsession about this specks😠😠😠
long story short
3 years ago I sat up all night on a bipolar manic till 4 am attacking and pinching and pulling out wierd flat crispy secks out of my skin i litteraly am obsessed with the texture of these bumps they are triggering my picking and its worse every day .FACE bumps somtimes look clear like salt,mabey yellow light brown, a mix of clear with
brown and red in one (speck) these can still be looked at upclose wit a magnify glass the clear sandy ones are in the hairline forehesd behind ears and neck shoulders and now a few on arms, some on cheeks chin and jaw.3yrs ago I gave myself a massive bacterial skin infection no doc could help me...treated me like i was crazy. finaly ladt year i self disgnosed myself. im alot better but ..my picking has become 10000×worse it feels routine to clean out or rid my skin of this (THINGS)so i , pick, heal ,scab,and repeat again and again untill all were gone but feeling great then becoming low and ashamed 😢.(they allways come back) .The specks in face are a mix i have normal white heads and comodomes that pop out like anyone else and then i can see a darker pore like grey led pencil dot I can only see these in extreme lighting face flat to the wall ,these dots can be extracted with a simple push with nail edges and tweezzers they pop out leaving a almost waffel like pattern of dots that somtimes bleed and then swell.I can hear them make a faint crack pop noise when extracted. My scalp gets them bad they tend to be white and flakey somtimes in my arms and declotage area .the sin on my arms is covered in scar tissue from repetivly removing these . not demodex . wondering if mabey the amount of dammage ive done to my skin could have caused my hair folicles and pours to change ?i mean ...i used to just get a few white heads on my chin and nose ! the white heads were soft and white and normal .. now every single folicle and pour is congested with these hard crispy flat flakey things that are driving in insane the kp bumps are spread out in patterns clusters and singular my fat areas my .These are poped with tweezers and a puff of tiny white strings a pop out These leave a smalll pit that gets a blood colored scab and swell a bit.I am sorry to ramble i hope this made sense.
Hey hun, I am bipolar 2 myself and I understand what you mean about the obsessing over something bit. I have a tendency to do this once in awhile myself and I believe it to be anxiety induced. I know we all have a little bit of that OCD in us when we are anxious/manic and it’s not a good feeling. I am experiencing the same kind of feeling on my skin and I think it may be the Demodex someone mentioned in an earlier post. I am going to look more in to that. It’s the only thing I’ve seen so far mentioning the sandlike feeling. I would however, contact your doctor and tell them about the picking, even if you’ve told them before, tell them again. And tell them again and again. Because that’s not fair for you to feel like that, and they don’t always focus on the “smaller” details. Good luck with everything. I hope you get some relief!!!
HI Did you google waxy skin plugs? I found pictures that are exactly what I have. Itches like crazy, you pull out a hunk of clear/white goo it's sort of firm, and it feels great..except that there are a billion of these next to each other! The sensation of them is somewhere between itchy pressure and a tiny shard of glass. Then it bleeds, forms a weird crust and the skin gets sort of firm and starts all over again in every increasing patches OR it goes away.
Currently trying at various points during the day - not in combination: Jojoba oil, which is supposed to dissolve some plugs. Tea tree oil, which is supposed to be anti-everything, but stinks. hydro-cortisone cream (which doesn't seem to work much) benedryl cream (which also doesn't seem to work much) and some benzol peroixide /or triple antibiotic cream (because it might be helping, but I don't really think it is.) (Oh I'm allergic to aloe, so I can't use a lot of the creams that are out there)
I've had this before and some combination of the above works (or maybe it was a salicyclic acid acne cream) or just time.
I hope one of these works for you. It's real (yeah it gets worse if you touch it, but it still is real)
PS I am a psychologist and people who tell folks its all in their minds may have never had an itch like this! My answer to "don't scratch" is MAKE IT STOP ITCHING
I have had this going on 7 years. 4 dermatologist and two skin biopsies later. Both negative with one showing some eosinophils. Was given antibiotics by one dermatologist and that lead to bloody diarrhea ( scary...sorry TMI). When I went back in her only recommendation was bleach baths!
Really?
I’d really appreciate talking off line. I’d like to share pics.
I have sores ( blisters/peeling) and get the sand like material some times crystal clear shard like glass pieces, sometimes tiny cigar shapes in red/brown, cream or clear with a red speck). Other times they are very small brownish triangular forms.
Often, it starts as a localized rash that consolidates, itches like crazy then later forms a non itchy blister which mostly heal slow. There are normally these crystals in the skin underneath the sore/scab. Until they work their way out they will not heal!
This is incredibly frustrating and at times depressing. I have do not have a psychiatric
diagnosis. I’m a medical professional completely fed up with allopathic medicine!
I have tried everything on my skin...everything!!!
The things that help the most are intermittent fasting, low carb ( really important), no dairy diet. I also take a fibroblast stimulating factor called STEM by Helixlife. I have lately started a high quality collagen and powered Vit C which the jury is still out on. I use double strength Collodal Silver soap.
Did you ever get an answer as to what it is? You describe my condition exactly. Tea tree oil is the only thing so far that helps for me and it has to be pure tea tree oil, mixing it with other oils proves ineffective.
I also have keratosis pilaris on my arms and legs and have this exact same thing, I just thought it was normal. It's like little salt granules form under my skin. I thought it was like dry puss? I have fibromyalgia as well but that was only a recent thing, I've had this weird salt thing my entire life I thought it was just how pores worked. I literally love the texture though its terrible, it makes me rub my head and the back of my legs to pull out these little salt granules all the time. It looks similar to the little white bit at the top of a hair thats fallen out, except thats usually softer.
I have the same thing but I don't pick or squeeze my skin to avoid damage. I use estee lauder advanced day ware (cheaper on ebay) and obsessively lightly rub my face until the grains start coming out. You are right they are never ending. They vary in size as well I've felt some very large one come through my pores. If your not careful it will leave a weird crusty layer or dry layer on your skin and sores which you can get rid of by taking hot showers. The Doctor told me to take cool showers but my hair looked like straw and felt like too. A I also use a skin barrier my dermatologist recommended called hylotopic plus but you need an RX and go through the same routine as the estee lauder . I have this condition from head to toe and am OCD with it. I spend hours upon hours trying to maintain my skin because whatever it is builds up and causes extreme wrinkles which I have learned to control. Softsoap makes a BlackBerry sugar bodywash with little lite gental grains in it that helps draw them out of your skin especially your face but be prepared to spend some time in the bath. I have more advice if needed.
I have had this going on 7 years. 4 dermatologist and two skin biopsies later. Both negative with one showing some eosinophils. Was given antibiotics by one dermatologist and that lead to bloody diarrhea ( scary...sorry TMI). When I went back in her only recommendation was bleach baths!
Really?
I’d really appreciate talking off line. I’d like to share pics.
I have sores ( blisters/peeling) and get the sand like material some times crystal clear shard like glass pieces, sometimes tiny cigar shapes in red/brown, cream or clear with a red speck). Other times they are very small brownish triangular forms.
Often, it starts as a localized rash that consolidates, itches like crazy then later forms a non itchy blister which mostly heal slow. There are normally these crystals in the skin underneath the sore/scab. Until they work their way out they will not heal!
This is incredibly frustrating and at times depressing. I have do not have a psychiatric
diagnosis. I’m a medical professional completely fed up with allopathic medicine!
I have tried everything on my skin...everything!!!
The things that help the most are intermittent fasting, low carb ( really important), no dairy diet. I also take a fibroblast stimulating factor called STEM by Helixlife. I have lately started a high quality collagen and powered Vit C which the jury is still out on. I use double strength Collodal Silver soap.
Demodex (maybe incorrect spelling) mites aka eyelash mites. Have had same problems. No doctor was able to help. I even had one suggest I go to the mental crisis center. I was diagnosed with Lyme disease. Morgallens. All kinds of things. But nope. Just an extreme excess of the mites. I had the salt stuff everywhere. Especially my eyebrows, head and arm hairs. Severe burning and crawling feeling. Look d around online. Saw something about the kites. Treated myself with tea tree oil mixed with coconut oil, then used cortisone cream over that. Used it for a week, after months of undiagnosed suffering and it immediately took care of the problem.
Everyone thought I was crazy originally, and seeing things. It was a horrible experience. Thankfully I have a relentless boyfriend who figured it out with me.
Tea tree oil the granular particles from appearing on my skin as long tea tree oil stays on my skin but I have some questions as to your experience. Did the particles vary in size? Were they mostly salt like crystals and tiny black specs? Was it mostly on top your skin, as in the particles were easily removed? And how long did you use tea tree oil before it stopped permanently?
I've had the condition for months and doctors have been of no use. A response would be greatly appreciated. Thanks in Advance.
Just found this post while looking for something else. Good news! You are not crazy! I went through it for about 8 years I stopped going out with friends, changed jobs, moved out of my home thinking that bugs were biting me. One doctor said I needed to see a psychologist. A top dermatologist did a biopsy of my skin he finally agreed there was something going on but did not know how to deal with it. He advised me to pay attention to what I eat, I went on a sugar free candida diet because sugar can cause the skin itching symptom. It did not stop the problem! Finally one doctor told me to treat it from the inside out not from the outside. I came to the conclusion after seeing about 6 different specialists that around 2011 some toxic materials were released in the air, possibly around the time of the explosion in Japan or maybe some chemical was being tested that nobody wants to talk about. Some people got sick from that pollution. One doctor who is an expert in toxicology said it's due to silicon in a lot of consumer products. The thing that worked for me after spending all my savings on creams, doctors visits....is a daily DETOX. Also rub some pure Aloe Vera juice on your skin, not the gel. Go to the store or online and buy a bucket full of limes. 1 lime in water first thing in the morning on empty stomach, 1 lime around noon time, 1 lime late afternoon or before bedtime. You will hopefully notice that the itch will stop and the granules will stop coming out. Keep detoxing until this crap, whatever it is, comes out of your system completely. It's not a pest infestation, you are not dreaming,. Morgellons is not what you have, even the condition people call Morgellons is also an environmental illness cause by toxicity. Do not give up! It's a process there is no overnight cure. This is the type of illness that you need to be prepared to fight sometimes for several years. I think it gets in the bloodstream and regular blood tests done at hospitals cannot detect it, just like when you have fungus you need special tests done to detect it. Wishing everyone GOOD HEALTH!
I’ve suffered from the same exact symptoms for years.. I’ve seen doctors, multiple dermatologist, sinus specialist, had lupus and other testing done , etc. etc. I’ve tried everything and anything. Nobody could possibly understand how debilitating and beyond stressful situation this is unless you have this mysterious problem that nobody has an answer for.. without going on and on about the stress this has put on my life for years I seen your post and I seen it’s 7 years old and I’m hoping and praying that maybe you have received some answers since this post . Hopefully you will see my message and can help me in any way . Sincerely thank you for sharing this post now I know I’m not crazy .
I experience the salt grains often with my PBC especially when my liver enzymes are over 600. I told my hepatologist about it but he looked like that was not a normal symptom. I believe it may have something to do with the liver not being able to filter sodium levels so your body gets rid of the salt by pushing it through your pores. I could be very wrong but even though it’s annoying and causes the itching to intensify, I don’t think it’s harmful or the drs would already know about it and what’s causing it. I have multiple small pinhole sores that arise from these grains exiting my pores… you are not the only person who has asked this very question so yes, I do believe it is a symptom of PBC or any other form of liver disease.
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PBC and Cholinergic Urticaria
Is anyone else a bit of an anomaly?
Heavy legs?
Taken off Ocaliva today. 
Scared 
