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- Mon Jun 14, 2010 10:35 pm
I wrote this for future visits to other doctors so I don't have to repeat myself, but I decided to try a forum. No doctor could figure out what;s wrong with me, I went 6 times to the ER, called many doctors, saw specialists. I'm not sure in what category put it given it's a medical mystery up to now.
I'm a 21 year old Female.
First off, thank you for whomever reading this, I more than appreciate it.
For two weeks I had splitting headaches coming from the back unto the temples. I felt pressure through the day, and a few times (maybe 10 to 15 times) a day I felt like someone was literally crushing my skull.
The headaches stopped and one day I woke up with general weakness through my limbs. Any small effort made my muscles feel very tired. Like going up a few stairs my legs were tired as if I ran a marathon but my breathing and heart rate was fine. My arms were also very weak. I felt tired and generally very lethargic. Mentally and physically. I slept maybe a good 15 to 20 hours a day. I thought it was a cold at first.
Two days after the onset of the body weakness, my left forearm was the weakest of my limbs with a very noticeable deterioration compared to two days ago. I had weird spams and a burning sensation in my hand and some upper arm numbness at times. General confusion, time disorientation and dizziness. There was a “bump” on the middle-right side of my inner left arm. I had a bit of confusion and focus problems and a lower back ache which descended into my legs, mostly my right thigh with a shooting pain coming from the sciatica nerve. A day or two later, my neighbor (which is also one of my best friends) convinced me to call info-health (811) and I did so. The nurse asked me about my temperature which was normal, my heart rate was a bit higher than normal (about 120 a minute), I told her about my weakness, my left arm, and my confusion and she urged me to go to the ER and made me promise that as soon as I hang up I either go to the ER with someone or she calls an ambulance. I actually waited for my mother to come back from work, which took about 3 hours, meanwhile my neighbor was with me.
When my mother came back from work, she took me to Saint-Mary's ER, I was quickly seen and admitted and put in the “common” room (where people spend the night). My mother left because she was working in the morning and a good friend of mine came and took over looking after me, it was about 1am when he came over. I was seen by Dr. (Intern I think) Marie-Luce Chen, she gave me a neurological exam (test my strength, make me walk on tiptoes or heels) my left arm was much weaker and much less endurance. I had difficulty walking on my heels. I never tried when I was “healthy” so I'm not sure if I generally can do it but I couldn't at all. I could not stay on my feet with my eyes closed and arms in front of me either. They took my blood and a urine test (both came back normal). Around 3am-4am Dr. R. Drummond saw me also re-did the neurology exam. Same thing happened than the first time. They were trying to put me on pain killers for my back, they gave me two (I think the same thing as Triatect-30 but a different name) twice, both times it did nothing. At home I also tried Aleve and my neighbor gave me Tramacet which didn't work either. At the end they gave me two Dilaudid which worked almost immediately. And he booked me for a CT head scan. I left to go for a cigarette and call my mother, at the exit I was stopped by a lady who put me on a wheelchair and took me to the CT scanning room. I removed all my piercings except my implants. The CT showed nothing abnormal and I was discharged. Dr. Chen apologized they didn't find anything and I was sent home with a Dilaudid prescription. Dr. Chen was very nice and had a great sense of humor and very professional. My friend was a the “designated” driver and we got home, went to bed at a bit passed 5am and woke up the next morning around 12.
My friend, when he left, I asked my neighbor to pick up my prescription, she was going to wall-mart. During that time my left arms swelling previously mentioned started to get bigger and a blue-ish color. From there the veins broke (I felt a “crunch”) and blood spilled underneath my skin. The bruise was the length of my forearm. All this happened within 2 hours. I took a glass to give soda for my neighbor and my hand let go on the glass. I became increasingly dizzy. My neighbor was very concerned and stayed with me until my mother got home and she took me back to Saint-Mary's ER. At this point I was scared myself. I saw another Doctor I think his name was Dr. Reid. He didn't say much and took my blood for a test I stayed there an hour an half. Usually Saint-Mary's ER moves quickly so it takes maximum 30 minutes from entering to being seen from a Doctor. He took a blood test and it took 30 minutes before the results came back, they were normal and I was discharged.
Leaving the hospital, I was with my mother, our tire had a flat. While waiting for CAA we decided to go to Davis Mortimer Jewish Hospital because she was concerned and so was I. I mean, it was a huge bruise and it was scary, and my vascular system started to be very painful and my veins were getting stiff.
*On a side note, my left forearm was never used for blood samples, there was no physical (nor emotional or stress) trauma that could cause this.
At the Jewish Hospital I waited 3-4 hours in the waiting room before being admitted, the bruise grew and one started to appear underneath my left breast on the far left side and started extending towards the middle (but never attaining it).
I was taken to the “common” room to be assessed by a Doctor, I was seen by Dr. Segal. He quickly examined me and took more blood samples and gave me two urine tests. They moved me to a room, my mother had to leave home and I was left alone. After an hour of being a lone I was wheeled out into the end of a very cold hallway. At this point I was pretty ticked off, in pain, afraid, alone and cold. Without anyone giving me even a bit of consideration. My mother came back, I was ready to get dressed and leave right then and there until a Dr. told me to stay put because the dermatologist he called was coming from home. It was around 7 am, I was tired, in pain and scared.
The dermatologist came rather quickly (within 30 minutes) he name is Dr. Genviève Fortier-Riberdy. She works at the Jewish, CHUM and Saint-Luc's hospital. She saw me and diagnosed me telling me she was 99% sure it's Zona and gave me a prescription (for very expensive pills might I add). Gave me a follow-up reference for two days later at the CHUM. She discharged me with more Hydromorphone.
*Another side note, Zona is asymmetric (indeed my bruises were all on the left side) but they are NOT a rash, at all, they are very obviously bruises, she completely miss diagnosed me, made me take antibiotics which made me weaker and my stomach upset and cost over 100$. I mean it's not a dermatology issue, even I know that, and it does not even look one bit like Zona. This made me extremely upset including how the hospital treated me.
The next day I spent at home relaxing, the bruising got worst, started on my right side also (excludes Zona, which I already checked what it looks like, but I still kept taking the antibiotics thinking a Doctor knows best). On my face, right forearm and knee/thigh. While I was getting worse, the pain also worsened a lot so I upped my dose myself from 1 pill every 4 hours to one pills every 2 hours and half or 3 hours.
On the Tuesday of my appointment I presented myself at the CHUM, she saw me and discarded her Zona diagnosis and decided on a biopsy. Taking a 4 samples with a 4gauge dermal punch, using only one punch to do all four. She took a sample on top of my left hand, one the first bruise on my inner left forearm, and two under my right breast on the older bruise and a new forming one. Her and her Intern (I think) stitched me up and gave me a last extensive blood test and sent me on my way.
I will receive my result within a week and half, but she will not be there until the 23rd. Currently we're the 14th of June when I'm writing this and it's been a week since the biopsy. Two of the stitching placements have been more than irritated. I regularly change the bandage and keep it clean with a Sea Salt solution and wear loose clothes and keep the area covered by the bandages at all times. I have 4 cats so I make sure nothing irritates them. I let them air out for an hour or two a day in a clean room where the cats are not aloud in. One of the stitches had too much pressure and ripped, which is relatively minor. One of them though skin grew over the stitch itself covering it completely included some other of the stitches which are also “ingrown”.
From then to yesterday I was relaxing, taking it easy, not doing much effort and only going out in the backyard to get some air. The bruising disappeared from my face and I had a lot more appearing on my left arm and some but not much on my right arm. I had a pretty big bump and my mother convinced me to go back to Saint-Mary's ER yesterday. I went, it was Dr. Drummond again, he's a great doctor and remembered me. He's very thorough and has great bedside manners and a great sense of humor. He reassured my mother saying he doubted that I would loose my arm or have a permanent “deformity” and he did not think that I would die but would not elaborate on his theories until I got the results of my biopsies. Gave me more Dilaudid and sent me on my way home.
We stopped at an all night pharmacy and got the prescription. I must say that I've doubled my dose because one pill (1mg) barely takes the edge off the pain. So I take two every 3 hours. It doesn't get me “high” just very relaxed, I'm coherent (I'm currently on it while I wrote this). I stay up about 18 hours straight so that's about 6 a day. And I sleep for about 9 to 10 hours. But because I don't do much I don't get tired as quickly even being very lethargic.
I'm extremely dehydrated since a week or so, I need to drink a lot, almost excessively but my salivary glands are not working properly and my throat is dry. I feel like I don't urinate enough for what I drink, but my urine is clear and no pain during urinating.
Bowel movement is so-so but I think not eating and taking Dilaudid is causing the constipation. Because otherwise when I'm healthy it's regular.
The left arm is brutal. The veins stiffen and go to the surface, you can see them clearly underneath the skin, the skin becomes “bumped” and then the veins bursts and you can see the blood spilling underneath the skin, it usually takes 1 hour and half from noticing the bump to the blood spilling. The pain appears when the bump because relatively big and presses on nerves, causing my left hand and arm to be very weak. The constant pain compares to having fire injected intravenously and it's a constant, painful and agonizing burning sensation through every capillary, veins and artery through my upper body. Merging that with the back pain, I must say it's awful and I don't know what I would of done without the Dilaudid. I cannot even properly describe the pain. I have never felt anything like this in my life.
Since two days I have a full body itch, no bumps, no burns nor discoloration or any skin botches or anything different. Just an itch through my whole body (arms, legs, back, face, head feet, butt but no in my groin region). No fleas, or anything “mini insects” that are noticeable or anything, just an itch.
It's not easy bruising, as in I don't bruise easily there's absolutely no trauma at all.
Also when I sleep since I'd say since 4 days, I get extremely hot (but no fever) when I'm in bed, I sweat, a lot, and feel very hot. (But my temperature is normal, this is sort of weird). And only in bed.
These are the symptoms which I had/have, those with a star are gone;
-General “vascular” pain.
-Slurred speech. Not often.
-Horrible focus. It has gotten a bit better.
-Muffled hearing. As if I would hold my hands to my ears, I hear well but slightly muffled and not like under water but really as if my hands would be covering my ears.
-Horrible itching all over my body. Just started today (14th of June)
-Extreme dehydration. I drink ALL the time, I get tons of Powerade and Gatorade, it helps the most.
-Dizziness. I thought it was because I barely eat, but I forced myself to eat something and got some sugar in my system and I'm still dizzy to it's a symptom.
-Complete lack of appetite.
-Eye focus is off. This also got a bit better.
-Facial and foot swelling.* It got much better, my face still is a bit swollen but my feet are alright.
-Paleness. I'm extremely pale on the face, I look pretty dead actually, I have very dark black circles beneath my eyes and my lips are either really pale or darkened in an unnatural color (blue-ish/black). It's more than just unusual or die to allergies.
-Mouth burning. Each time I eat or something, my mouth is on fire, like a burning sensation, not like I would drink something hot, but just like I was gargle acid.
General Health Info About me;
Medications I've taken in the last 6 months;
-Hypnogen (Zolpidem); In Europe for the time I was there to help me sleep. 10Mg once before bed for a month.
-Gravol; Helps me sleep sometimes. (Two tablet maybe twice a month if I feel I won't be able to fall asleep.)
-Gabapentin; Prescribed by my family Doctor to help me sleep (which was useless and never re-filled).
-Tramacet; 4 pills of 350mg for my current pack pain (not at the same time). Did not work.
-Tylenol extra fort (extra strenght); I had a really stiff neck 2 months ago for 2-3 days.
-Aleve; A few times for the headaches first mentioned and for the current pack pain (before the Dilaudid or Hydromorphone).
-Pro Valacyclovir; For my very misdiagnosed Zona by Dr. Genviève Fortier-Riberdy. Out of 42 I took 14.
I take showers which are a few degrees lower (not cold, but a tiny bit cooler than usual) so my blood circulation gets a bit slower (because of the hemorrhaging) to help with the bleeding, sleep with the AC on a few degrees higher also (not freezing, just 2 degrees higher than comfortable temperature) because cool and sleeping helps slow the circulation and the bruising is better the next morning.
I've been very careful with what I eat, any changes in my environment, stress or mental or physical trauma that may have caused this, and there's nothing. I did not have a fever at all, during no point of this it exceeded 37.5. My breathing is fine and my heart rate is still a bit elevated. I think my pressure might be a bit down but nothing too noticeable.
My blood and urine results where 100% normal and I had also blood tests done about 2 months ago by my family doctor which were also normal. My first urine test was a bit “dirty” (transparent and regular color though and the rest was fine).
In my opinion (not a medical professional); I doubt the biopsy will show up with anything, I think my problem is either immune or hematological, if something a vein biopsy would have been appropriate, I think my problem isn't in my tissues nor in my blood (full blood test panel). The problem is not the bruises themselves but an underlying unknown problem.
I drink Apple Cider (not the alcohol one) to help cleanse my Liver to keep them up and healthy. And Cranberry juice for my Kidney's. And pro-biotic capsules (which are the only ones that passed medical tests; Bio-K Plus, CL1285md) because I don't eat much and want to keep my intestinal functions, well, functioning. I barely eat, I do not feel hungry at all. I do my best to force myself to eat, an least soup. But I drink a lot.
My mother tried to help with my sciatic pain, she's an exceptional massage therapist and she finished medical school in Europe (but that's about 30 years ago and never really practiced). She did help me a bit but my nerve is very irritated and inflamed, so she can't do much about it.
No alcohol beverages either during this time at all.
I was in Europe for a month last October to November (5th of October 2009 to the 6th of November 2009).
I gave myself a seasonal flu shot in Europe last November (the 3rd of November 2009 to be exact). There, you can get a prescription for a flu shot syringe (already ready, if the doctor doesn't have any in his office) you can either get the shot when you get it at the pharmacy or take it home on special “demand”. I was leaving the 5th of November and didn't want to wake up super early so I gave myself the shot at home. (Did it properly, intramuscular in my deltoid muscle).
I don't do well on hormones (like birth control pills). It gives me evil mood swings.
Definitely not pregnant.
I'm not around any chemicals (except hair color) and I did some paint stripping about a month and half ago but the paint stripper was the less toxic one available and well ventilated.
I'm not super active, I rather study but I'm not a couch potato.
Animals I'm in contact with on a daily basis; Huge fish tank I have since 3 years, Lizard I had since 4 years and 4 cats I have since an least 1 year, although I'm allergic I deal with it fairly well and it doesn't bother me and they're house cats that never go out.
I had 4 surgical procedures done; at 2 months old my skull “sutures” fused together too quickly, second was when I was 13 I had a cyst on my right wrist, when I was 18 I got a clitoral hood bisection, I performed a Lingual Frenectomy on myself, also when I was 18 I got a copper IUD installed.
No allergy to any medications.
I don't do any drugs, not even marijuana occasionally, I drink socially which is once or twice a month, a bit more during warm weather and I smoke half a pack of cigarettes a day more or less. I have not had a piercing in over a year and no new tattoos in over 2 years.
Gave blood almost exactly a two years ago at a blood drive in Verdun. (Only gave blood once).
No chronic problems except a lot sleeping problems like; dream paralysis, or exploding head (Like loud sounds out of nowhere), or I wake up after a nightmare and still see a bit of what I was dreaming about (wake up from a nightmare with bees in it I'll wake up in a panic and see some bees for 2-3 seconds), insomnia (unable to fall asleep for hours) or over sleeping (sleep 12-15 hours and wake up, then go back to bed after 5 or 6 hours because I'll get super tired, restless legs and arms). So this took a toll on me and I was prescribed Gabapentin, which is a very mild muscle relaxant and an anti-convulsion medication which did nothing for my sleeping or anything else for that matter. I quit taking it after completing a full course and never got a refill.
When I was younger I had chronic back pains but nothing like I currently have. Allergies that were misdiagnosed time over time for the flu by my family Doctor. (Dr. Sayegh Jones working at the CLSC of Verdun/Cote Saint-Paul). I had some “social” issues, social phobias, more precisely of schools and institution buildings, which I got over.
I was afraid doctors would think I'm crazy or something going to the ER 6 times in a week getting 3 hard medication prescriptions. Usually I'm the first one to send someone to the doctor or recommend going to the hospital. Last time I was in the ER it was almost two years ago, in October of a very advanced Strep throat infection, loosing my eyesight and hearing on the right side and my glands extremely swollen in my neck. The hospital was the last resort. That was 2 years ago.
I'm also afraid that the doctors might think I'm a junkie looking for Morphine or drugs, but to be honest, if I would want to get high/stoned whatever you call it I would get a joint or something but I'm not even remotely interested in drugs. Honestly I was afraid the Dilaudid would make me less coherent and mentally present, and obviously I can do my pure physics so it doesn't affect my mental ability HAH!
I'm almost desperate, the pain is awful and I don't want to spend too long on those pills. And not even for me, but my mother is extremely concerned and I don't want her to worry and spend sleepless nights. She's a single mother, working a lot, I'm a student and don't have tons of money, this is just adding stress on her which is actually my main concern. Even if the Doctor says that I'm fine, until they don't find anything, she will worry, she's the best mother I know, and I'm not saying that because she's my mother.
Doctors that have seen me;
Dr. R. Drummond -Saint-Mary's. - Twice.
Dr. Marie-Luce Chen -Saint-Mary's.
Dr. Reid -Saint-Mary's.
Dr. Segal -Davis Mortimer Jewish Hospital in Montreal.
Dr. Genviève Fortier-Riberdy -Davis Mortimer Jewish Hospital in Montreal, CHUM for follow-up. - Twice.
My family doctor;
Dr. Sayegh Jones -CLSC de Verdun/Cote Saint-Paul
These are some pictures.
Latest pictures, note the bump on the left side of my arm. This “exploded” and created another massive bruise taking up my whole forearm;
The whole picture gallery;
http://s901.photobucket.com/albums/ac21 ... e/Bruises/
If someone has theories it would be very appreciated or suggestions to help before the biopsy results. If someone needs to reach me, feel free to do so at firstname.lastname@example.org .
| Dr.M.jagesh kamath
- Thu Jul 29, 2010 10:29 am
After going through your post in detail, i would like to give suggest from a dermatological perspective. Your condition resembles a rare disorder by name Autoerythrocyte Sensitization (Gardner-Diamond Syndrome). The main clinical feature is the appearence of repeated crops of large painful ecchymoses. Usually this bruise is preceeded by a burning sensation and a feeling of a lump at the affected site. The area gradually becomes red and within an hour bruises appear which are tender and painful for many days, lasting for a week or longer. They are more common on the extremities. The pathology of this condition is poorly understood. It has been hypothetised that one becomes sensitive to ones own red blood cells. This can be demonstrated by injecting the patients own blood by intra cutaneous injection which leads to bruise formation.
The association of high incidents of emotional disturbance have been recorded in these patients and this psycological component has made some researchers to suggest the term Psychogenic Purpura. Examination of blood is normal and treatment is unsatisfactory. However, recently, Plasmaphresis has given good results in a few.
Do keep us informed about your biopsy results too.
| Dr.M.Aroon kamath
- Thu Jul 29, 2010 11:43 am
Thank you for the detailed post. In my reply, I will not (for ethical reasons) be referring by name, to neither the institutions/hospitals you had attended, nor the doctors who attended on you.
The first thing that struck me as surprising is the fact that you had performed a Lingual frenectomy on yourself at an early age. Pain thresholds do change with times. I hope the clitoral hood bisection that you underwent was carried out by medical personnel.
There is only one condition that perhaps comes just close enough to resemble some of the symptomatology described. This condition is known as
“Autoerythrocyte sensitization” (Gardner-Diamond syndrome).
Autoerythrocyte sensitization is typically encountered in white women who are emotionally stressed or who have known psychologic illnesses.
Pathogenesis: as yet not fully elucidated. Escape of RBCs into the tissues is involved in the pathogenesis of the lesion.
Symptomatology: Trauma induced or spontaneous, painful ecchymosis occur. Sometimes. bruising may occur at sites distant from the site of trauma. Coagulation parameters are typically within normal range. case history included repeated visits to various physicians at different centers and an extensive investigative profile.
Diagnosis: Is by autoerythrocyte sensitization test. In this test, 0.1 milliliters of autologous RBCs or erythrocytic stroma is injected intradermally at one site (and a separate control injection without RBCs) at another site. Both injections are preferably given at sites difficult for the patient to reach(to reduce the possibility of self-induced excoriations). If pain, swelling, and induration at the site of RBC injection appear(and not at the control site) 24 to 48 h after injection, then the test is considered positive.
One very detailed study published in 1967 observed “a predominance of hysterical and masochistic character traits as well as a propensity to express psychological problems in physical form both through conversion mechanisms and psychophysiological responses”.
The authors suggest that this is an organic disease, that is closely related to severe emotional disturbances and that hypnotic suggestion can apparently influence lesion production.
http://www.psychosomaticmedicine.org/cg ... /5/491.pdf
The main treatment for this condition is psychiatric intervention and therapy.
As far as your symptoms are concerned, the description “From there the veins broke (I felt a “crunch”) and blood spilled underneath my skin”, has not been reported in this condition(to the best of my knowledge).So, your condition does seem unique. Therefore, it will be best to wait for the skin biopsy results to arrive and then your doctor will undoubtedly guide you concerning further management. I hope this information is useful.
| Faye Lang, RN, MSW
- Thu Jul 29, 2010 8:31 pm
It can be very difficult to have documented physical symptoms and hear that the cause may be related to psychological factors. Having the diagnosis of autoerythrocyte sensitization, if that is the diagnostic conclusion, does not mean that the person is mentally ill. It is a rare somatoform disorder in which the medical symptoms are very real. It is a diagnosis of exclusion, meaning that when every other possibility has been ruled out, autoerythrocyte sensitization (Gardner-Diamond Syndrome) must be considered. Conditions that are ruled out include autoimmune disease, purpura conditions and amyloidosis, among others. These conditions would be revealed by blood work and skin biopsies in addition to careful examination and evaluation, such as you describe. Since they have not been identified through the tests that you have undergone, psychosocial stressors must be considered. There may be no overt psychological symptoms, and the person may consider their stressors usual and manageable, while the stressors are in fact placing major stress on the body. Case histories are not plentiful since the condition is rare, but through exclusion, psychosocial stressors are clearly indicated. There is likely to be resistance to the idea of having a "psychiatric" diagnosis, but one must remember that it is really a medical condition caused by psychosocial stress instead of by bacteria or a virus. There may be a genetic influence. Others have been resistant to the concept of psychological treatment being part of the treatment directed at a medical condition.
In your situation, consider your description: you have a history of social phobias, you are a student (which is stress-inducing in itself), you have had painful and unexplained physical symptoms, you have had worry and fears regarding what was happening to you, the waiting for long periods during acute symptoms, having a flat tire on the way to seek further evaluation, unrelenting pain, extensive sleep problems which may include sleep terrors (an anxiety syndrome), the insult of being left alone and cold in a hallway and the diagnosis of Zona, and have undergone extensive and repeated tests. Yet you appear to minimize your own stress and instead focus on reducing your mother's worry. It is notable that you were relaxing and taking it easy and the facial bruising began to resolve. A psychological evaluation of your stress level likely would find significant stressors prior to the development of your symptoms, as well as those since you have sought treatment. The earlier psychological treatment is received, the better the outcome with this condition. And I will emphasize again that psychological treatment in this situation is part of the treatment for a medical condition. I hope you are able to accept all avenues of treatment to help resolve your distressing condition.
Good luck to you.
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