Pls help me again and discuss your eye/ face symptoms…

So I am really starting to feel I have CRPS of the face/ eyes from the botox injury (I can have both). I ask CRPS victims and the symptoms line up, plus I know no matter what I do have that condition too elsewhere…If anyone has these symptoms that I have starred with ** I need to know, in case I am wrong.

CRPS evolves and spreads and these things are just getting worse. As some heard before, I am encouraged to do an intervention for CRPS after all (as of today) when symptoms took on a new level of scary. CRPS of eye can sometimes lead to blindness. It can lead to incredible lifelong eye pain. My left arm is affected by CRPS from a needle poke and it never improved in 2.5 years. But interventions have complications.

So, I want to hear again how closely your symptoms lineD up with mine and if it improved on its own.

Eyes

– extreme 10/10 eye pain like stabbing pressure in bavk of eye – goes on all day…worsens with light and eye movement** pain that is horrible after 2 10/325 norco amd 150 mg Lyrica for example

– blurry vision, floaters

– burning of eye **

– painful to blink

– dry eyes (also symptom of CRPS)

 

Face

– intense burning of face and chest which can suddenly spread to include scalp, and waxes and wanes**

– heat of face and upper chest comes with flushing of face, whole face darker color along with-  hest, face hot to touch – even like this on 150 mg lyrica **

– continued intense pain at unjection sure needle sites nearly two months out **

– jaw pain, ear pressure, tooth pain

– heightened sensitivuty to pain/ pressure

– intense headaches**

– burbing that jumps ahead to include mew areas and has a demarkation line where it ends

– normal eye exam except for early onset liquifaction

Drugs do not dampen symptoms.

thank you!

 

 

 

 

 

 

 

And we believe the FDA will respond to our reports of Iatrogenic Botulism….

I am so discouraged by continuously reading articles reiterating what we already know about the FDA regarding patient safety.
Beware FDA ‘Approved’ Robotic Prostatectomy Care
Mon, 05/18/2015 – 1:24pm
PR Newswire

A South Florida-based urologist today has issued a stinging report critical of the Food and Drug Administration (FDA) decision to approve robotic surgery for treating prostate cancer on the basis of only some low-level and irrelevant gallbladder studies.

Dr. Bert Vorstman is a proponent of focal therapy in certain cases of prostate cancer and his dire warnings regarding the misrepresentations, lack of ethics and chicanery surrounding the robotic prostatectomy have been echoed by a number of physicians and organizations.

Said Dr. Vorstman, “Not only has the healthcare public been totally duped into thinking that robotics have been scientifically proven to be safe and effective in the treatment of prostate cancer (when it has not) but the robotic prostatectomy is commonly used to treat the Gleason 3+3=6 ‘cancer’ which lacks the hallmarks of a cancer. In essence, many men are treated for a disease, which needs no treatment, undergo surgery with an unproven device and are often left limp and leaking.”

In his report, Dr. Vorstman added, “The dangers of the robotic prostatectomy are clearly evidenced by the endless lawsuits filed against surgeons and the device manufacturer; the scores of self-reported harms listed on the FDA’s own product safety system, MAUDE (Manufacturer and User Facility Device Experience) representing only about 8% of actual adverse events, as well as the warnings issued by the USPSTF (U.S. Preventive Services Task Force), a Government oversight agency and the robot makers themselves who clearly recognize the device dangers as their disclaimers are getting longer with each revision.”

Dr. Vorstman continued, “The intentional withholding of information, deceptions, and distortions regarding the radical prostatectomy being perpetrated now by robotics advocates know no bounds. Even worse than the approval of robotics for treating prostate cancer without a single case of prostate cancer ever being tested for that study was the recent shameful FDA denial of the high-intensity-focused-ultrasound (HIFU) application. For this HIFU device evaluation, emboldened FDA urology panelists protected their approved robotic prostatectomy franchise even further by conjuring up trial criteria ensuring the HIFU application would fail.”

Furthermore, said Dr. Vorstman, “Embarrassingly, some urologists have stooped even lower recently by exploiting the medical illiteracy of Senate Staff for a political pushback on the USPSTF to discredit its ‘D’ grading of PSA-based prostate cancer screening and their conclusion that screen-detected prostate cancer treatment benefits are outweighed by the harms.”

Dr. Vorstman warned, “The FDA is responsible for protecting the public health by assuring the safety of medical devices. However, when powerful urologists are able to penetrate the nation’s oversight agencies and exert influence to satisfy self-serving needs, it signals a dangerous failure of regulatory oversight. Sadly, the need to protect a surgical ‘truth’ which only urologists can see, has trumped patient safety in favor of profit.”

Weekend retreat or Informal conference

I was talking with another member from the site yesterday. She mentioned that maybe we should organize a weekend retreat or informal conference for the support group members well enough to attend. We could get together to discuss experiences,treatments and ways to raise awareness of Botox poisoning. We don’t know where this would be held, but we were thinking maybe somewhere centrally located? Somewhere tropical would be good,too!lol Please respond with your thoughts on this? Would anyone be interested?

f.lux for eyes

hey everyone i posted about this before but given the amount of talk about eye issues lately and a lot of peopel having difficulty with their eyes im mentioning it again: there is a small program called f.lux which automatically dims the light of your computer monitor according to the time of day. it can be downloaded easily here if you run windows or mac : https://justgetflux.com/

i seriously cant use a normal computer screen now it makes me feel like my eyes are melting. i know all of us use the computer and this little program has been a lifesaver in many ways. it really reduces eye strain… as well as helping with issues like insomnia or sleep problems related to blue light exposure in the evening.

it is better than just adjusting your monitor it actually changes the light to more red than blue on the color spectrum. i really recommend it for people with any kind of eye/light sensitivity.. since all of us use computers. its extremely simple to download and run.

oh: in case you are wondering what it actually looks like, just imagine looking at a white page on your screen and then like turning a dial that makes the screen much much darker, and a warmer tone of light, less eyeball meltingly blue. we get so used to electronic light being blue we dont notice it. but once you get used to a more ‘warm’ tone of light in your monitor, you will never want to go back. (i didnt anyway) its like looking at parchment instead of neon.

light at the end of the the tunnel

I want to share my Botox experience with everyone because I am living proof that there is a light at the end of the tunnel.  I had 100 units of Botox injected into my right pirirformis muscle for piriformis syndrome.  I had been experiencing unbearable sciatic pain for years and my doctors and therapists suggested the injection.  I am an RN and was concerned about injecting a toxin into my system, but was assured by my doctor that it would wear off within 3-4 months; the worst I might experience is mild flu-like symptoms.  As we all know, this is simply not true. My injection was on March 20, 2014 and I have experienced the following symptoms over the past 14 months:  anxiety, depression, short term memory loss, severe diarrhea, fatigue, headaches, hypertension, night sweats, swallowing problems, internal chills, paleness, visual problems, ringing in ears, episodes of paralysis to all 4 extremities, with the inability to hold up my head, severe breathing problems, slurred speech and droopy eyelids.  I have been in and out of numerous hospitals over the past 5 months.  All tests have come back negative. My pain management doctor, who is new to me, was the only doctor to acknowledge that my symptoms are most likely due to the Botox injection.  From what I understand, there is no cure.  I have a wonderful primary are physician who is treating my symptoms; and mine have improved significantly over the past few weeks.  I take Propranolol 10mg in the morning and 20mg at bedtime.  I also take Klonopin 0.5mg twice a day. These meds were initially prescribed for hypermobility syndrome, but they also seem to be managing my Botox symptoms, as well.  My diet consists of fresh fruits, vegetables, small amounts of lean meat, Bolthouse smoothies with added protein supplement;  I drink a lot of water and have eliminated alcohol and soda and I limit my sugar intake.  I also take a probiotic twice a day; the diarrhea has resolved.  I had been confined to a wheelchair, but I am not able to walk short distances, and I will begin aquatic PT soon.  Pulmonary function tests revealed that my small airways are only functioning at 58%.; however, I have learned to pace myself, going up and down the stairs only a few times a day.  I have oxygen as needed, but thank God I haven’t needed to use it much.  I feel I am getting stronger every day.  This experience has had a positive outcome for me because it has renewed my faith in God.  I have been praying daily and I am now attending church regularly with my family.  I truly believe in the power of prayer and I thank God every day that I am alive and that I am getting better.  I pray for everyone who is enduring this nightmare.  But please, keep the faith that things will get better.  God Bless.

fully devastated

Hi.

Im from poland and my english is not perfect. Sorry for any grammar mistakes.

Im 6 months after my botox injection.

 

Now i look like no longer me.

I look strange…odd… my face looks horrible.

Different shape of my eyes, enlarged eyebrow muscles, strange smile (droop mouth).

My face looks like a big puffy balloon (swelling??).

This is like never ending nightmare.

I have 5 years old daughter. Im depressed.

I have zero quality of life.

My face changes 50 times a day.

One thing im perfectly sure… this is not my face.

Not my fucking face.

 

Numbness with tongue and mouth

Hi all-

has anyone had tongue numbness or on the inside of your mouth? I pretty much associate all my symptoms to Dysport but I’m not sure if I’ve seen anyone posted about this but it would make sense if this was caused by the poisoning.  It’s really the least of my symptoms but I’m guessing because I know 2 people who had cancer recently and one of their earlier symptoms was tongue numbness.

Thanks!

4 weeks now Bladder retention

Update the hives, sore throat and blocked ears are gone. Tightness by right eye still and I just looked off. Today woke up and now am having urinary retention Having difficulty emptying bladder and weak flow. This has never been a problem before Can this honestly be from cosmetic botox? And a whole month after? I just want to stop being scared.

Botox and Juvaderm nightmare

Hellish existence..onset 5 days after Botox injections. I have been getting Botox since 2007. Over the years I had some strange symptoms..like eating and all of a sudden when I go to swallow the soup..nothing happens so I sit with soup in my mouth in a frozen state and then soon can swallow. I thought it was the onset of some horrible future disease. It never occurred to me could be the Botox. Anyhow..last time I had Botox March 27, doctor seemed to put it almost direct into my temples..she was in a hurry that day.I also had Juvaderm injected around my mouth, sides of mouth, chin area. I thought nothing of it. In the next 5 days I developed numb , tinglling , pins and needles in fingers. Over the past month and  a half this has progressed to my feet and my tongue and lips,mouth area. My hands feel like they were stung by a jellyfish and flash seared in pan with hot oil and are stiff feeling. I can no longer text..too painful. I have been to the ER , a neurologist, a rheumatologist, an internist. Had an MRI of brain, MRI of neck, 64 slice CT scan and many many blood tests and nothing they checking for allthings like MS, etc. etc. and there is nothing found they can attribute to this. The neurologist is the only one that admitted it could be the Botox.
it should be the makers of Botox and/or Juvaderm proving to us it is not the Botox…not us having to prove to them it is…I can barely perform my work functions due to the pain and burning and neuropathy in hands..cannot taste food right…wearing flip flops as shoes too painful. Suddenly out of the blue..I get like this? no explanation? no traceable reason?

Botox and Juvaderm neurological nightmare

Hellish existence..onset 5 days after Botox injections. I have been getting Botox since 2007. Over the years I had some strange symptoms..like eating and all of a sudden when I go to swallow the soup..nothing happens so I sit with soup in my mouth in a frozen state and then soon can swallow. I thought it was the onset of some horrible future disease. It never occurred to me could be the Botox. Anyhow..last time I had Botox March 27, doctor seemed to put it almost direct into my temples..she was in a hurry that day. I thought nothing of it. In the next 5 days I developed numb , tinglling , pins and needles in fingers. Over the past month and  a half this has progressed to my feet and my tongue. My hands feel like they were stung by a jellyfish and flash seared in pan with hot oil . I can no longer text..too painful. I have been to the ER , a neurologist, a rheumatologist, an internist. Had an MRI of brain, MRI of neck, 64 slice CT scan and many many blood tests and nothing they can attribute to this. The neurologist is the only one that admitted it could be the Botox. check this out http://www.newsweek.com/new-reason-frown-85491
it should be the makers of Botox proving to us it is not the Botox…not us having to prove to them it is…I can barely perform my work functions due to the pain and burning and neuropathy in hands..cannot taste food right…wearing flip flops as shoes too painful. Suddenly out of the blue..I get like this? no explanation? no traceable reason?

Hellish existence after Botox and Juvaderm injections

Hellish existence..onset 5 days after Botox injections. I have been getting Botox since 2007. Over the years I had some strange symptoms..like eating and all of a sudden when I go to swallow the soup..nothing happens so I sit with soup in my mouth in a frozen state and then soon can swallow. I thought it was the onset of some horrible future disease. It never occurred to me could be the Botox. Anyhow..last time I had Botox March 27, doctor seemed to put it almost direct into my temples..she was in a hurry that day.Also I had Juvaderm around my mouth, sides of mouth and on chin. I thought nothing of it. In the next 5 days I developed numb , tinglling , pins and needles in fingers. Over the past month and  a half this has progressed to my feet and my tongue and lips. My hands feel like they were stung by a jellyfish and flash seared in pan with hot oil . I can no longer text..too painful. I have been to the ER , a neurologist, a rheumatologist, an internist. Had an MRI of brain, MRI of neck, 64 slice CT scan checking for MS, Lupus, etc. etc. and many many blood tests and came back normal and showing nothing they can attribute to this. The neurologist is the only one that admitted it could be the Botox. check this out http://www.newsweek.com/new-reason-frown-85491
it should be the makers of Botox proving to us it is not the Botox…not us having to prove to them it is…I can barely perform my work functions due to the pain and burning and neuropathy in hands..cannot taste food right…wearing flip flops as shoes too painful. Suddenly out of the blue..I get like this? no explanation? no traceable reason? What about a Botox / Juvaderm combo exacerbating the other? Not sure what is going on ..but I truly feel as though I have been poisoned.

Hellish existence

Hellish existence..onset 5 days after Botox injections. I have been getting Botox since 2007. Over the years I had some strange symptoms..like eating and all of a sudden when I go to swallow the soup..nothing happens so I sit with soup in my mouth in a frozen state and then soon can swallow. I thought it was the onset of some horrible future disease. It never occurred to me could be the Botox. Anyhow..last time I had Botox March 27, doctor seemed to put it almost direct into my temples..she was in a hurry that day. I thought nothing of it. In the next 5 days I developed numb , tinglling , pins and needles in fingers. Over the past month and  a half this has progressed to my feet and my tongue. My hands feel like they were stung by a jellyfish and flash seared in pan with hot oil . I can no longer text..too painful. I have been to the ER , a neurologist, a rheumatologist, an internist. Had an MRI of brain, MRI of neck, 64 slice CT scan and many many blood tests and nothing they can attribute to this. The neurologist is the only one that admitted it could be the Botox. check this out http://www.newsweek.com/new-reason-frown-85491
it should be the makers of Botox proving to us it is not the Botox…not us having to prove to them it is…I can barely perform my work functions due to the pain and burning and neuropathy in hands..cannot taste food right…wearing flip flops as shoes too painful. Suddenly out of the blue..I get like this? no explanation? no traceable reason?

 

 

Post April 2 Injection Photos

 

One day before injections
2011
December 2014 Dickens Faire
December 2014 Dickens Faire

 

image
Before, 2012

 

 

 

 

image
Before, one day before injections, no makeup.

Flushed hot face last weeken.

Now, last weekenf, facial swelling, redness.
Now, last weekenf, facial swelling, redness.

 

Flushed hot face

 flushed hot face

image image imageimage

 

image image

image

One of the first days
One of the first days

image

 

While I was on steriods- functioning.
While I was on steriods- functioning.

image

 

These are just symptom photos from after April 2, 2015.

 

I know people post their symptoms but I specifically need to know if anyone is experiencing:

– heat/ temperature changes in their fave or elsewhere that go back to normal. Does your face get hot and flushed for a day then cool down again?

– skin sensitivuty to clothes and pressure, skin color changes like redness, blueness, mottling

these are typically CRPS symptoms and I wonder if ai habe CRPS of the upper thigh and face too. Or whether it will go away & it’s just botox.

Iron level jumps

Since I became so ill my iron level droped below minimum level , the norm in Poland is 37-145, mine was 35 then it jumped to 165 in just one month. Now it is again below minimum. Do u guys have or had problems with Iron? Why it gets so low? I never had this problem before injection.

From “The Life History of a botulinum toxin molecule” by Lance Simpson 2012

image image image image

 

I will post morw from this study later but was rather shopcked to read that epithelial cells lead to the toxin being released into the general circulation and the structure remains intact?! Also it’s resistant to proteolysis and that “intraneural botulinum toxin displays a persistence of activity that may range from several weeks to more than a year”?!!!

Were you up to date on your tetanus shots?

Was everyone up to date on tetanus shots when they got their bad botox experience? I found out recently I am not up to date, and as tetanus and botox travel along the same pathways I wondered if something about the population that is suffering due to botox injections is separating us from those who get injections and think that they have no adverse effects. I recently read a study where an altered flu vaccine prevented mice from getting botulism.