Just a question....is it common to feel sharp, almost electrical shooting pain with AA? I notice the frequency and length of incident is increasing..not sure what's going on...hmmmmm??
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Posted 01 February 2017 - 02:31 PM
My appt with the neurosurgeon didn't go as well as I would have hoped. He refused to acknowledge arach from my MRI and I asked him why Dr Tennant said there was "Clearly clumping and adhesion to the arachnoid lining" , he told me that I should call Dr T and tell him he is wrong and he is not a neurosurgeon so should stop telling patients about arachnoiditis. I was referred here by the neurologists in the same hospital who told me that arachnoiditis was not a disease that neurologists treat and I would have to see a neurosurgeon. I am being given the runaround and no one is treating me, they refused all medications. Not sure what I will do when things run out as I have no refills left on anything. I ran out of Cymbalta last week, this being for my depression and anxiety, the withdrawals are difficult as too much adrenaline is released and therefore thoughts are always raced and it is difficult to control anger. Being without my anti depression medicine is hard on me and then being told they would not replace it seems cruel, I have been on it for over two years. This doc ( pronounced with an i ) simply refused to listen to my symptoms, the onset of blinding headaches and tingling scalp in the past six weeks, the mention of paralysis yesterday, nothing, the advancing of symptoms in my shoulders, forearms and hands resulted with a sigh and a lesson in why if I had been injected at the lumbar level it is impossible to have arach above there. I have no idea where I will go from here, I am sure this will mess up my SSD claim, it means I cannot close the car insurance claim for the wreck that took my livelihood. Sorry for the downer, I am at the bottom of a well and the sides are crumbling.
this also posted on face book
Posted 09 February 2017 - 10:29 AM
I’ve written this article to help educate those who want to learn about chronic illness. It is written from my perspective, that of a doctor who treated patients with chronic illness for many years, and who spent five years of my life homebound due to chronic illness.
I want to spread awareness so that friends, family, employers, coworkers, and health care professionals can better understand chronic illness. My hope is that an increase in awareness will help strengthen relationships, reduce misunderstandings, and improve support systems for those with chronic illness.
About Chronic Illness
Chronic illness is a disease, condition, or injury that can last years or a lifetime and is typically not curable, though in some cases it may go into remission. It can vary in its severity, with some people able to work and live active or seemingly “normal” lives; while others are very sick and may even be homebound.
Many people with chronic illness have an invisible chronic illness. The severity of their symptoms is not clearly noticeable, which may lead to a lack of understanding and support from doctors, family, friends, and coworkers.
1. Nobody wants to feel sick.
In all my years as a doctor treating patients with chronic illness, I never saw a patient who enjoyed feeling ill. I saw the opposite, patients who were once very active, desperately trying to find answers and treatment for their overwhelming symptoms.
2. Many doctors don’t understand chronic illness.
Despite medical evidence disproving this perception, some doctors are “set in their ways” and do not truly understand chronic illness or how to appropriately address it. Therefore, patients often have to spend precious time searching for a doctor who understands their illness and provides appropriate treatment options while their symptoms potentially worsen.
3. Being unable to work is not a vacation.
Those who are not able to work due to chronic illness are not “on vacation.” They are instead, struggling every day to do simple tasks: getting out of bed, getting dressed, making a meal, bathing, etc. They are often homebound, too sick to leave their homes except for doctor appointments.
Have you ever been stuck indoors for a couple of days due to bad weather or a temporary health issue? Remember feeling annoyed with the inability to leave your home and be active? Now imagine not being able to leave your home for weeks or months at a time. Frustrating, right?
4. Chronic illness can trigger many emotions.
Chronic illness itself can change the biochemical makeup of the mood control center in the brain. In addition, frustrations such as the following can affect a person’s mood and lead to depression and/or anxiety:
Those with chronic illness often feel a great loss. It is not unusual to experience some or all of the stages of grief (i.e. denial, anger, bargaining, depression, acceptance). They grieve for the life they once lived. They grieve for the life they must endure now. They grieve for the life they dreamed of having.
Many people with chronic illness also feel very isolated. Even though they crave social interactions, their symptoms may make it very difficult and at times impossible to talk on the phone or type an email or Facebook post.
5. The symptoms of chronic illness are very complex.
The symptoms experienced by those with chronic illness vary depending on the illness; however, many people experience some or all of the following symptoms: extreme fatigue, pain, headaches, brain fog, nausea, and/or dizziness.
It is not unusual for the symptoms of chronic illness to wax and wane over time (sometimes even from hour to hour), so planning activities ahead of time can be very difficult. A “good day” for those with chronic illness would likely be considered a sick day for most others.
6. Chronic illness fatigue is much more than being tired.
Fatigue is a common symptom in chronic illness and in many cases it is severe, often debilitating. It can be easily triggered by simple daily activities or by more elaborate events such as holidays. Those with chronic illness will often have to “pay the price” for engaging in an activity and then require days, weeks, or even months of recovery.
Those with chronic illness may need to rest often and may have to cancel events last minute. This does not mean they are lazy or trying to avoid activities. Once fatigue kicks in, there is no other option other than to rest. It’s as if the body “hits a wall” and can’t go further, no matter what. To better understand the fatigue and limited energy of a person with chronic illness, read this helpful article about the spoon theory.
Have you ever been stuck in bed for a few days from a really bad infection, surgery, or hospitalization? Think back to how that felt. You could barely get out of bed and simple tasks were exhausting. Now consider feeling that way every day, all day, for months or years?
7. Pain is a common symptom in those with chronic illness.
Those with chronic illness often experience severe pain, including headaches, joint pain, muscle pain, nerve pain, back pain, and/or neck pain.
8. Brain fog is extremely frustrating.
Brain fog is frustrating because it is a difficult symptom to describe so that others understand its impact. Brain fog is a cognitive dysfunction common in chronic illness, which can include issues with word finding, concentration, and recall. Those with brain fog often know what they want to say, but can’t find the thoughts or words to communicate effectively.
9. There is a greater risk of dangerous infections.
The immune system in those with chronic illness may be overactive and instead of attacking infections the chronic illness immune system wastes time and energy fighting the body’s own organs, joints, nerves, and/or muscles. Many people with chronic illness are on medicines to suppress their overactive immune systems and consequently, need to avoid being around sick people. A minor cold in a healthy person could progress to a dangerous infection in someone with chronic illness.
10. Certain foods can aggravate symptoms.
Certain foods may aggravate the symptoms of those with chronic illness. Common culprits are gluten, dairy, sugar, soy, yeast, alcohol, and processed foods. These trigger foods increase inflammation which can cause a significant increase in symptoms which may last for hours or days (sometimes weeks).
Because so many of these trigger foods are in our diet, it is often difficult to pinpoint which foods aggravate symptoms and staying away from favorite foods can be a challenge.
11. Sensitivity to smells is common.
Certain smells including perfumes, colognes, cleaning agents, and smoke can trigger headaches, brain fog, nausea, and other symptoms in those with chronic illness. Also, some of the medicines used to treat chronic illnesses are low-dose versions of chemotherapy drugs. The sensitivity is similar to that seen in those who are pregnant or on chemotherapy and have a sensitivity to smells.
12. It takes a lot of effort to manage chronic illness.
Those with chronic illness have to be very regimented to make sure they get adequate rest, avoid trigger foods, take medications at the correct times, and avoid flares. It is understandable that sometimes they just want to feel “normal” and eat some pizza or stay up late, even if they know they will “pay for it later.”
Despite struggling with grief, isolation, and often debilitating symptoms, those with chronic illness (and their caregivers) warrior on. They fight daily to be able to understand their bodies and to do things others take for granted. They are often surrounded by a society that does not understand their challenges, and therefore, is unable to provide adequate support.
You can make a big difference in the lives of those with chronic illness by learning more about their symptoms and approaching them with compassion and support. Gaining an understanding of chronic illness will help make these conditions less “invisible.” This is why it is so important you are taking the time to read this article. Thank you!
This story was originally published on Mastering Health & Happiness.
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Posted 04 April 2017 - 10:39 AM
Antonio Aldrete MD
PO Box 4627
Santa Rosa Beach FL 32459-4627
781 Main Street
Chipley FL 32428
Regarding the diagnosis of arachnoiditis
Independent Medical Record Review
Many patients with arachnoiditis are debilitated by this dreadful illness and suffer not only from unrelenting spinal pain but also from arachnoiditis associated symptoms like burning in the legs and toes, balance problems, bladder and bowel problems, vision and hearing changes, weird skin sensations like "water dripping" or "ants crawling", "electric shocks" type of pain, headaches, just to name a few. If diagnosis confirmation is requested, the patient should send me, via mail, all pertinent medical records and operative reports from spinal injections, epidurals, surgeries or any other interventional procedures as well as all MRI discs or films. I require that the patient email me a detailed list of all symptoms, synopsis of healthcare events and a list with dates of all spinal procedures. I actively practice, treat patients with arachnoiditis and provide expert services. I disclaim that I don't provide any medical opinions over the internet, I don’t offer any advices or diagnosis without first examining patient medical records and I don't accept any radiological images as an email attachments. I am not a radiologist, but arachnoiditis specialist; I render written opinions regarding arachnoiditis diagnosis only. After the review of medical records, and if the patient so desire, I prepare the report of my findings, diagnosis, prognosis, medication management and arachnoiditis treatment options.
Independent Medical Examination
An extensive 3-5 hr physical examination, review of medical records and discussion with Dr. Aldrete followed by a written report.
The report can be used for various medical or legal reasons like dealing with health or accident insurance, workman’s compensation, disability, continuum of medical care, case evaluation and meeting with attorney or simply, just to have piece of mind with respect to the diagnosis.
We believe that if you are reporting symptoms consistent with arachnoiditis, your pain is real, debilitating and systematically degrading the quality of your life.
We believe that you are suffering through many sleepless nights, wondering, worrying and looking for answers.
Most importantly, we believe that the pain is not in “your head”
Call (205) 240-4231 for more information.
No representation is made that the quality of medical services to be performed is greater than the quality of medical services performed by other doctors.
Dr. J. Antonio Aldrete is Board Certified in Anesthesiology and has provided medical care to thousands of individuals for over 35 years. He has considerable experience in the diagnosis and treatment of patients with diseases of the spine, failed back syndrome, postlaminectomy pain syndrome, abnormalities of the dural sac, complications from intraspinal injections and infusions and special expertise in arachnoiditis. Dr. Aldrete has done original work on brain resuscitation, allergy to local anesthetics, anesthesia at high altitude and malignant hyperthermia. He was the chief anesthesiologist for the first 180 liver transplants done in the USA. Dr. Aldrete developed a postanesthesia grading system known as the Aldrete Score, which is being used in every American hospital.
Creator and President of the Arachnoiditis Foundation Inc., a non-profit organization, Dr. Aldrete devotes a substantial amount of time on expansion of therapeutic modalities, and finding a possible cure for arachnoiditis.
Posted 10 June 2017 - 11:28 AM
My apologies for the delay in my reply, it has been hectic here recently!
The report advises that the Ministry of Health told the Committee that a study to determine the incidence and prevalence of arachnoiditis sufferers in New Zealand is not possible, therefore it is very difficult for the Committee to recommend any further action without knowing this information.
I would suggest that you contact the Clerk of the Health Select Committee to seek further clarification on Health@parliament.govt.nz
Posted 16 July 2017 - 01:53 PM
Signs and Symptoms
Arachnoiditis has no common pattern of signs and symptoms and they vary from case to case. It is not compulsory that the symptoms of arachnoiditis which are being faced by one patient will also be faced by some other patient too. However, the most common and usual symptom of arachnoiditis is extreme pain in the lower back and in the legs. Other symptoms include:
It is to be duly noted that these symptoms vary case by case in patients of arachnoiditis. You may suffer from multiple symptoms or may suffer from only a few. The degree of signs and symptoms of arachnoiditis faced will depend upon the severity of your condition and the cause of the condition.
Posted 29 June 2018 - 11:37 AM
Hi John and Guada, Sorry for the delay getting back to you, I have been going through a difficult time for the last few weeks. The only information i can find is that 140 Australian sufferes from Mylograms took out a case against Glaxo S K The case was won and a settlement out of court was made, also a fund was to be set up re sufferes from Myodil etc. I have looked through my papers and cant find the other info, Not sure what i have done with it. I will keep trying to find it but believe a further settlement has been made. I hope that you are keeping on top of your illness and i wish you well. Hope Guada that you are coping also As Ann is doing for me. No further news just yet but i will keep in touch. Best wishes to you both, Take care. Regards Mel and Ann
Posted 15 July 2018 - 03:57 PM
RACHNOIDITIS BASIC HANDBOOK FOR PRACTITIONERS, PATIENTS & FAMILIE
After reading this handbook I find it very good but short on some issues
the rest I have
Short is electric shock racking my body first recorded early1980s
cant control nerves shakes jerks