Disease and Illness

Nothing makes you feel more helpless than when you’re in pain or watching a child, spouse or parent suffering. How do you cope with illness in your family? Have you been diagnosed with a chronic disease? Have you survived a debilitating illness? Do you worry about world health epidemics affecting your family? Share your stories and support for others.
Replied By: jessiclewell on Sep 28, 2016, 5:01PM
Hi I was wondering if anyone knew a dentist that will work with a payment plan. My insurance doesn't cover anything other than extractions and I have been trying to get my smile fixed for almost 8 years now. But I have horrible genetics and when I was young I was never taken to the dentist let alone the doctor. So I have been trying to play catch up my entire adulthood but the damage is done. So its close to 5000. I'm even willing to pull everything and just get dentures. My grandfather had to at my age. If anyone has ideas. I live in pinellas county Florida. 

I just want the pain to stop and feel pretty and take a good picture with my family. 
Replied By: jennimonkey92 on May 26, 2016, 11:40AM
I have 18 Q minus syndrome and I was just wondering if anybody else has this if so please contact me I just want to know all the stuff that could happen to me in the future thank you in advanced.
Replied By: lalundquist on May 19, 2016, 12:27PM - In reply to duffymom
It  sounds like your daughter has symptoms of Lyme disease.  Especially  if she has been outdoors alot. This can  go undetected for several years.
Replied By: jeanietreat on Jan 28, 2016, 6:21PM
Please do research on this.  There is no Cure.  There is no celebrity out there giving it a face.  We need to get the word out so more research can be done.

Multiple System Atrophy, (MSA), is a rare, degenerative neurologic condition that affects both men and women, usually starting at the age of 50 or 60. MSA is considered a type of parkinsonism but with more widespread effects on the brain and body. The condition was first identified in 1962 and named Shy-Drager syndrome for two physicians who reported patients showing a combination of Parkinson-like movement disorders and problems with the autonomic, or body-regulating division of the nervous.  

The rate of MSA is estimated at 4.6 cases per 100,000 people.  MSA progresses more quickly than Parkinson’s and there is no remission from the disease. The average lifespan after the onset of symptoms is 7.9 years. Almost 80% of patients are disabled within five years of onset, and only 20% survive past 12 years.

 My husband, 49, has had this for a few years now.

     May 12, 2015, Tony was diagnosed with Multiple System Atrophy (MSA).  Tony has had 9 doctors in the last 3 years with several tests and treatments.  The doctors have determined that this disease started around 2011. 

Symptoms that Tony has now are:  Slow and Stiff Movements and no Balance, Writing is unreadable and small,  Heart Palitations,  Low Oxygen Level, Urinary Incontinence , Urinary Retention Chronic Constipation,  Vocal Cord Weakness, Choking, Bad Eye Sight, Trouble Regulating Blood Pressure, Trouble Regulating Body Temperature, Anxiety and Depression and PBA, Needs Assistance to Shower, Shave and Dress

Symptoms to come: Sleep Apnea, Low Oxygen, Fainting, Passing Out, Vocal Cord Paralysis, Blindness, Walker, Permanent Catheter, Colostomy,  Wheel Chair, Feeding Tube, Bed-Ridden and  Hospice.

Tony has needed several medications for symptoms and equipment to exercise muscles and lungs, and will continue to need more as the disease progresses. Tony is very hard working and is pushing as hard as he can to fight this while waiting on a cure. The doctors have noted that within 1 to 2 years, Tony will need complete assistance with daily activities.

 Help help us get the word out about this nasty disease. 

Replied By: teeda4 on Aug 11, 2015, 3:51PM
Several years ago I got sick and I knew I was sick.  I kept going to doctors and they all just more or less brushed me off.  After doing a lot of research myself, I found a specialist on the West Coast and decided to go and see him.  After a year's worth of testing I was diagnosed with cushings disease.

God rest my daddy's soul, he said many times that there were a lot of people out in the world who didn't have my fortitude and gumption to keep at it until I got results.  I knew something was wrong and I meant someone was going to believe me.

I ended up having two transsphenoidal surgeries (pituitary) that were basically unsuccessful.  With each of those I had 2 CSF leaks.  I also had 2 subsequent CSF leaks that had to be repaired.

Due to the transsphenoidal surgeries not being successful, I had to have my adrenal glands removed from the top of my kidneys which has left me with addisons disease.  This has to be controlled with lifelong steroid replacement.  Many people do not realize that without steroids you will die.

It was just my husband and I in Portland, OR all alone all the way across the country.  My bi-laterial adrenalectomy lasted about 8 hours.  We are from Georgia BTW.  My neuro-endocrinologist had the sweetest PA who came and sat with him for about the last 2 hours of the surgery or else he would have been all alone the entire time.

After the BLA my CSF leak blew open again so another surgery to pack it with fat.  Then they had to do another surgery to put in a lumbar peritoneal shunt.  Then I got bloodborne MRSA and bacteremia.  This trip we were in Portland almost 6 weeks with most of in spent in the hospital.  That was in October / November 2006.

We rented a van and my mom flew to Portland and we drove home.  I couldn't fly home due to the CSF leaks.

To say that we have had an adventure through my illness is an understatement.  I now am panhypopituitary and on most all hormone replacements.  I was taking growth hormone but took myself off of it.  Balancing hormones it really hard.  It's not like getting the real thing.  LOL

I've also learned that all endocrinologists are NOT created the same.  Matter of fact, very few understand me.  

My husband has been my ROCK!  Without him and the Good Lord I would have been dead a long, long time ago.  After coming home from Portland I had several other surgeries but that's another long story.

I could tell enough medical stories to write a book.  hehehehe

Today I'm happy to be able to do what I can which is whatever the day allows me to do.  I do not work anymore after an almost 22 year career in industry.  That was hard on me, but I've learned to adjust.

I'm happy to be alive and thankful to the Lord! 
Replied By: stellalee on Jun 29, 2015, 7:58PM
I'm only 22 but have a horrible memory and thinking process. It didn't use to be like this, in high school I knew how to do big math problems fast in my head. Not like that anymore. I forgot what both my former username and password was so I created a second account her. I get headaches when I read, have almost no sense of direction, have to ask someone at least 20 times on different occasions what there name is befor i have it memorized, I don't know the date unless its on paper or screen in front of me, and I often draw blanks in conversations. I have partial-complex seizures and a sugar addiction, which can't be helping. I see a neurologist for managing my ati-seizure meds and anual EEGs, but im scared to bring up memory. I fear my doctor will call me "paranoid" or say "don't worry about it", and sometimes replies like that effect me emotionally.
Replied By: chandula123 on Jun 28, 2015, 12:03AM
I have a body odor issue which has being haunting me for three semesters of my college life. First my doctors thought i had hyperhydrosis which is excessive sweating, whin in my case is not the problem. I dont sweat that much, but i tend to smell so bad. Most of the time i smell like farts, stools, garbage and piss. I have spend a lot of my money on body soap products, perfumes and even medicine. But nothing worked. So i finally met with a dermetolagist and told me the only way is to control my diet. I am from sri lanka. We eat a lot of curry and spicy food. My question is, that my whole family eats them, then why only do i stink? I have being under a lot of stress, because people around me feels disgusted and move away from me and i dont leave my house because this issue which feels like im issolated. I really need a real answer. Pls dr.phil. My 4th semester is gonna start this fall, before that i need a solution. Please im a desperate student..
Replied By: duffymom on Jun 5, 2015, 10:51AM
My daughter has had joint pain since July 2014. She is 24 and use to love the outdoors, very active. Every joint in her body is inflamed and we don't know why. She has been to multiple dr.s physical therapy, blood work, x-rays, mri's and we still don't know why. One diagnosis is Fibromyalgia but that seems to be a diagnosis they give when they can't figure things out. She's been tested for arthritis multiple times and it comes back negative. We are willing to look into everything. Western medicine doesn't seem to help. It's so sad to see your daughter who was so strong and active have a hard time walking across the room. She spends her evenings in a warm tub. She is trying to get her masters but can't type the papers because her fingers and wrist are in so much pain and stiff. Many times she can not straighten out her fingers. She was just married and she and her husband are starting to look at diet and healthy smoothies. I'm grasping at staws trying to find a better diagnoses for her. Any idea out there?
Replied By: kellyapritchar on May 13, 2015, 1:53PM
I have Ankylosing Spondylitis which I will call A.S. It's a rare connective tissue disease which turns your body into stone and as things become fused you can no longer use them. Most people have a live span an average of 18 years shorter, if ya can call this living, ha ha. Beware of diseases whose motto is "We know how it feels"  Becausue it isn't  fun.

I had a progressive rheumy put me on antibiotics which some people in the UK had good luck with and I went into remission for about 15 years, but the pain never left and the need for surgeries to correct painful fusions and bone spurs has left me in pain, on morphine, and my life is about getting pain relief, and then withdrawing from the opiods as much as my pain levels can stand so I can be awake and do things whish a normal retired woman does. 

I feel sorry for everyone on this board for what ever physical challenges you face with me. We are on line a lot I think, if we can use the computers. I have a huge need to communicate, especially when I am ill.

There is a new treatment for people with my disease which makes me hopeful because some of these people are going into remission and there seems to be several medications which can change the way your body responds to the AS. I was against them at first, because they were cancer drugs but now I have seen and spoken to people who were sick and take these drugs and are doing well. Drugs like Humira or Enbrel. There are I.V's or there are pills. The I.V.s wor better I think So I am hopeful if these drugs do get you into remission that remission means the pain goes away and I no longer have to take opiates. Wouldn't that be a wonderful day? Later.
Replied By: lizmariecar on Apr 18, 2015, 6:34PM
A smile is inspiring. comforting, familiar, polite & healing. A smile can make an impression, statement & be contagious. Every day brings the million reasons we all use our smile, without ever even realizing it. But, for me, my smile is what brings torment to me rather than joy & I always do realize when I have to use it. Key words being 'have to' (social expectation). I've spent SO many seconds, minutes, hours, days, weeks, months, & years trying to reach out for help with it. My name is Elizabeth Carpenter. I'm 24-years-old. I have an under-bite, cross-bite, & TMJ. I have paradontel disease, loose/shifting teeth, & jaw bone loss. My teeth are rotated, crooked, crowded, cracked, & broken. My wisdom teeth are impacted & my enamel is very soft. I know I'm going to lose my teeth, soon & rapidly, & it TERRIFIES me. My depression, anxiety, & hopelessness about the situation is intruding my every thought & consuming my functionality. I have sleepless nights & anxiety attacks over trying to figure out how I can obtain possibilities to realistically financially take care of my dental needs so that i dont have to accept the end result as having to be dentures. At such a young age. The longer it takes, the worse & more expensive it becomes. When I was 11 I wrote a letter to Oprah (haha) asking for braces. When I was 14 my friend's mother attempted to help me get veneers with her in Mexico. That didn't work because there wasn't legal guardianship. For my 16th birthday I asked my parents for braces. Not a car, not a sweet 16 party, but for braces. Unfortunately but understandably they couldn't be provided.Since I turned 16 I've been working & trying to save enough money. But, life happens & I haven't kept my head even hardly barely above water. I know there's so many others in need, & definitely many whom are enduring much tougher struggles than I, but still I hurt. Physically & emotionally. I just want to be 24. I want to want to kiss my boyfriend & not feel repulsive. Confidentally smile in pictures. Go to social dinners & order what I want, not what's soft. Not ever have the thought of taking my dentures out before I sleep with my partner cross my mind again. Carry lipgloss instead of ibuprofen in my pocket. I've tried many different financial options & I'm at a loss. Please help?
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