Patience Is Needed When Living With Neuropathy

Today's post from neuropathy.org (see link below) is a personal story illustrating the importance of having patience when faced with the strange twists and turns of neuropathy. It can take a very long time before doctors and specialists a) identify your symptoms as being of neuropathic origin and b) take you through a number of steps in treating it. It's important not to panic but at the same time it can be a very frustrating process. Learning to take each day and each step as it comes, is pretty much forced upon you but it will help if you can try to go with the flow, rather than fighting it.

Finding Answers Takes Time, Patience, and Action!
By Mike Smith

As a professional writer, I spend much of my day at work and at home typing away on my computer. Working within a deadline-oriented industry as well as on a number of personal creative projects, I find myself typing vigorously -- often for hours at a time and with few breaks in between. So, in 2011, when I developed tingling and numbness in my wrists and hands, I -- like most people with neuropathy --initially ignored these slightly bothersome symptoms.

Could I Have Carpal Tunnel Syndrome?

Over time, the numbness and tingling sensations were progressing slowly, lasting for days and then for weeks. It wasn’t painful per se, but it certainly was distracting: I found I needed to take breaks from my writing to give my fingers and wrists a rest. The tingling (for lack of a better word) was continuous -- all the time, day and night.

Fearing I might have carpal tunnel syndrome, I decided to visit an orthopedic surgeon. He was certainly helpful -- and agreed that the tingling in my wrists could signify a classic case of carpal tunnel syndrome, given the amount of time I spend on a computer.

The orthopedic surgeon gave me a cortisone shot and we hoped for the best. Unfortunately, the shot was no help. In my mind though, it had to be carpal tunnel syndrome -- I mean, what else could it possibly be? So for six months, I used wrist splints every day at work and even while I slept to see if the symptoms would subside. But unfortunately, they didn’t…

Getting A Neurology Consult

After six months of waiting and watching, I went back to my orthopedic surgeon in the spring of 2012. By then, the numbness and tingling that I initially felt in my wrists had spread to both my feet and ankles.

The orthopedic surgeon referred me to a neurologist, believing that the spreading of the symptoms might represent something beyond carpal tunnel syndrome.
 
The neurologist definitely appeared concerned, as I was, otherwise, a healthy and active 25-year-old. I went through a series of tests and exams, ranging from MRIs of my spine and brain, to blood tests, and nerve-conduction studies. My doctors were searching for signs of anything from multiple sclerosis to Lyme disease, and celiac disease. Unfortunately, none of these tests helped us determine the root cause of my symptoms, nor did they pick up any nerve damage.

Given the sequence of events surrounding just one test (schedule an appointment, wait, have the test, wait, make a follow-up appointment, wait, go over results, etc.), by the time I had my second MRI, the symptoms had spread even further. What was a constant tingling in my wrists and feet now spread up to my knees and elbows. I also began to notice that there were particular instances when the tingling was most severe. When I took a hot shower, I had to avoid the water hitting me for too long since it aggravated my symptoms. When I stood barefoot on hard surfaces, I would need to sit down after a while to provide (minimal) relief to what felt like standing on hot bricks. It was also beginning to affect my sleep. Trying to sleep every night is a challenge given the constant tingling in an otherwise dark and quiet environment.

Finding The Neuropathy Association

Each time I was referred to a different specialist, or to undergo another test, I’d eagerly await the results, hoping that we would find something … an answer that explains what I have been experiencing for two years. The stories I read about on the Internet have saturated me with a series of worst-case-scenarios. But it was also while searching for answers online that I stumbled upon The Neuropathy Association’s website. The website provided a plethora of resources – online Chat transcripts, updates on medical studies and research, disease-specific information (considering there are over 100 causes of neuropathy), access to health experts... But what most interested me was learning that there were local patient-led neuropathy support group across the country for people living with neuropathy.

I reached out to the leader of the Pittsburgh support group and attended my first neuropathy support group meeting in the summer of 2013. I met over a dozen people, all with a variety of neuropathies, symptoms, and experiences. While everyone I spoke with at the meeting had a unique story, I was amazed by how each of these people continued to overcome their battles in different ways: they shared the common bond of living with neuropathy and wanting to improve their quality of life.

One of the people I met at the support group meeting took several years to discover the cause of her neuropathy and to get a diagnosis. I was able to relate because I am still working on getting my diagnosis. Connecting with her was especially helpful because I learned -- despite the frustration -- that seeking a diagnosis was a process and I would have to work towards it.

Being Able to Relate and Determine A Plan of Action

I know what I am experiencing, and I know it is 24/7/365 … for almost two years now. Why can’t we find out what’s going on? Why does test after test come back inconclusive? Are my doctors doubting my symptoms – or worse, do they think I’m making them up? It is frustrating to have to explain what I am struggling with over and over again. I learned recently through The Neuropathy Association that 30% of people diagnosed with neuropathy have “idiopathic” neuropathy – in other words, the underlying cause is not known. I’m fine with that…I could deal with that. But in order for me to move forward, the tests need to show my doctors what I’ve known all along: that something is wrong, and it’s spreading, and intensifying...

And, so my quest continues with the help of the Association and with the support of my family and my friends. I will continue to pursue all possible avenues to obtain my diagnosis, seek treatments to get well, and offer support to others too. Though I’m sure this means more doctors, more tests, more questions, and more waiting, I’m confident that the time will soon come when I can check off my battle with uncertainty and begin the process of living well with neuropathy, and not some unknown illness.

Amidst everything that’s going on in my life, I am determined to help increase public awareness of neuropathy. I’ve shared my experiences with a few of my family members and friends, and their first question is always “What’s neuropathy?” This needs to change.

I’m Running in the 2014 Pittsburgh Half Marathon for the Neuropathy Community

It’s crazy that a disease that affects over 20 million people in the US alone (whether they realize it or not) is not on the public radar. So I asked myself “what could I do to make a difference?”

I like to run. Running is therapeutic for me: it’s a mental sport, forcing your mind to focus on every aspect of your body movement: breathing, running, pacing, etc. Despite the fact that my neuropathic symptoms are still present, I can concentrate on other parts of my body to lessen their impact.

I frequently run 5Ks and other races with my wife and friends. Earlier this year, I participated in the 2013 Pittsburgh Half Marathon to help raise awareness and much-needed funds for the Animal Rescue League Shelter; Wildlife Center, a local animal shelter where I rescued my cat from in 2010. And, I recently signed up for the 2014 Pittsburgh Half Marathon – this time I’ll be running to support my fight -- our collective fight -- against neuropathy. And I’ll be wearing my “Together, We Can Beat Neuropathy!” t-shirt, awareness bracelets, and ribbons, and I will have my friends, family, and fellow neuropathy patients joining me as well. It is a great way to raise awareness of neuropathy among tens of thousands of runners, walkers, and volunteers involved in the event … as well as thousands of viewers across the U.S.

It is so important that we, as a community, continue to bring awareness -- in our own way and within our own networks -- to the neuropathy epidemic. Running is the best way I know how to achieve this goal.

http://www.neuropathy.org/site/News2?page=NewsArticle;id=8565

The Older Generation Living With HIV

Today's post from guardian.co.uk (see link below) is a break from tradition on this blog, in that it doesn't talk about neuropathy, it's treatments or its symptoms. However, as this is also a blog for people living with HIV, most of those living with neuropathy and over the age of 50 will recognise much of what is written here. With even HIV organisations proclaiming the arrival of a  'normal' life brought about by antiretroviral drugs and combinations, there is a danger that a large group of people will be 'forgotten'  in the general optimism. These people contracted the virus some time ago and are experiencing both old age and the side effects of both drugs and HIV at the same time. Very often they are not part of an extended family and end up with physical difficulties and loneliness as well. These are the people this article is about. Even if you don't have HIV but are reading this as a neuropathy sufferer, this piece is worth reading if only to show that whatever the cause, many of us end up with the same result.

HIV survivors: alive, but facing poverty, loneliness and prejudice
Thousands heading into an old age they did not think they would see, having given up jobs expecting to die young

Sarah Boseley in Washington The Guardian, Friday 27 July 2012 

In the 1980s and 1990s they were told they were going to die young, so they gave up their jobs and cashed in the pensions they wouldn't need, buried their friends and tried to make the most of their last months on Earth.

Decades later, thousands of men and women with HIV in the UK, US and across the world are heading into an old age they never expected to see. In the US in 2001, 17% of people with HIV were over 50. Now that figure stands at 39% and by 2017 it will be half. In the UK, the Health Protection Agency says one in six people (16.8%) being seen for HIV care in 2008 were over 50 – and that will double in the next five years.

Many of those who were saved by the discovery of antiretroviral drugs in the early 1990s felt it was a miracle to be alive. But life for the survivors of HIV, as they age, is bittersweet. Many are poor and have long since been edged out of the workforce. Half a lifetime spent on powerful drugs has taken its toll. Aside from the physical health issues as a result of the virus, there are high rates of mental health problems too.

John Rock, from Sydney, Australia, was diagnosed with HIV 30 years ago. "My partner started getting sick in 1983 and died early in 1996," he said at an international Aids conference in Washington DC. "Many of my colleagues and friends were pushed out of the workforce around the mid-90s because they were not well enough to work. Subsequently triple combinations [of antiretroviral drugs] came along and they are still alive, but at the peak of their earning capacity they were out of the workforce for 10 years. Now they are destined for a retirement they thought they never would have, but it's going to be in poverty."

Lisa Power from the Terrence Higgins Trust (THT), who spoke at the conference about the ageing HIV-positive community in the UK, acknowledged the unfortunate consequences of advice from support groups to those who were thought to be dying. "In the 1980s and 90s we encouraged people to give up work and go on state benefits and not be economically productive," she said. "Now we have condemned people to live on an old-age state pension."

Money is not the only need. Many feel lonely and isolated. In a video made for a project called The Graying of HIV in the US, Bill Rydwels, 77, from Chicago, recalled a time of terror and sadness when Aids was scything down his friends. It was nonetheless a time of warmth and support that he no longer has. "It's just so much better today and yet it is a lonelier time. Years ago it was a time that we all spent together. It was a terrible time and a wonderful time because you got to know everybody very, very well. They cried on your shoulder and laughed with you. You don't get that any more."

Recent research from THT in the UK reveals similar sadness. James, 61, a gay man living in the UK who did not want to give his full name, is suffering from serious health problems, including blindness resulting from the use of an experimental drug to treat another condition (not HIV). "My life is empty," he told researchers. "I have tried so hard over the last 10 years to fill the emptiness. Worked really hard at it. I am in a cul-de-sac. It would be nice just to have somebody to telephone.

"I am fed up with people at the top of HIV organisations saying because there is combination therapy everyone is fine. People with neuropathy, and in wheelchairs, we are the forgotten people."

Half the world away, in Africa, which now bears the brunt of the epidemic, the numbers of older people with HIV are also rising fast. Epidemiologists at the University of Sydney estimate that there are more than 3 million people over 50 with HIV in sub-Saharan Africa, and that the figure is rising rapidly.

Ruth Waryero, from Kenya, now 65, had an HIV test when she was 48. She went home and told her husband. "He listened to me and then he got up and said, it's up to you.

"Take care of yourself – I'm off. Since that time I have not seen him again and yet he was the breadwinner in the family. He left me with the four children and two years later I had two grandchildren.

"In Kenya we have different problems [from those in Europe]. Older men try to get younger women for sex. They ignore you because as far as you are concerned, you are finished. You don't need sex and they can apply to the young girls.

"But when you are old you are likely to be raped by those who are positive because they believe if they rape you, as old as you are, they will turn negative."

Older women also face embarrassment at clinics when they go for tests or drugs, she said. They are asked who they are collecting the drugs for.

"You are not supposed to have sex at your age," she said. "As a woman they ask if you are a sugar mummy. I say this HIV came from an old man and the old man has run away from me."

The older HIV generation – in Africa and elsewhere – is not only made up of those diagnosed years ago. Some are people who have been diagnosed late, having lived for years without knowing they were infected. And many people are now becoming infected later in life.

Laura, who took part in the THT research, is a white, heterosexual, divorced mother of two. At the age of 52 she started a new relationship and then suddenly became ill. Because her symptoms were similar to those of a friend who had been diagnosed with HIV, she took a test. When she was told it was positive, she felt numbness and shock, she said. She cannot believe, as a well-educated person, that she stopped using condoms with her partner and allowed it to happen.

Mark Brennan-Ing, from the Aids Community Research Initiative of America, told the conference of the "fragile social networks among people living with HIV in the US and Europe". Families have abandoned them or do not give them enough help, meaning they end up relying on friends, who often have HIV themselves.

Men who have sex with men, he said, are much less likely to have partners, spouses or children to care for them in their old age. Many of those interviewed live in fear of encountering hostility and rejection in care homes. A 52-year-old gay man from London told the THT: "I am somewhat fearful of a lonely old age. In practical terms, if I become mentally or physically frail, the prospect of being the only gay man in an old people's home is very frightening indeed."

http://www.guardian.co.uk/society/2012/jul/27/hiv-survivors-poverty-prejudice