'A Patient Voice' Community: Support Group

This is the time of year many people take a look at their health plans and decide what coverage...

Even if you're on the right track, you'll get run over if you just sit there. ~Will Rogers

Posted by Byroney_WebMD_Staff

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How and Why to Report a Post

Dear Members, Our WebMD communities are a wonderful place where members find friendship, support,...

Even if you're on the right track, you'll get run over if you just sit there. ~Will Rogers

Posted by Byroney_WebMD_Staff

Dear Members,

Our WebMD communities are a wonderful place where members find friendship, support, insight and share ideas. However, there are occasions when a post that is made violates WebMD's Terms and Conditions . We rely on our members to help WebMD maintain a safe and comfortable environment where everyone feels at home.

Please know that no other member will know that you've made a report, nor does reporting a post automatically mean it will be removed.
Here are the kinds of posts about which we're concerned:

Spam
Advertising
Personal Attacks (disagreement is NOT an attack)
Copyright Infringement
Inappropriate Member Nicknames
Use of inappropriate slang and/or masked/veiled profanity
Members discussing their personal physicians by name
Members who identify themselves as under 13 year of age
Too much personally identifying information (phone numbers, home addresses, etc)
Posts containing links to inappropriate sites (pornography, etc.)
Posts which are nothing more than erotica or soliciting cyber sex.
Someone planning suicide and needs our help

<br/ ><br/ >The best way to handle any such post on our communities is to not reply (other than when someone is in crisis). Instead, you can help your community by alerting the WebMD Community Moderator staff via the "Report This" link found below each post. You even have the opportunity to explain why you are reporting something. The moderator staff will receive that report and will review the post to determine whether or not it violates the WebMD Terms and Conditions or if the person needs crisis intervention. If the message is in violation of our rules, it will be removed along with any replies.
Please keep in mind that you should only report posts that you feel are violations of WebMD's Terms and Condition or needs a moderator's crisis intervention. Do not report posts simply because you disagree with the information contained within another member's post.

Thank you for helping to keep our WebMD communities on track. It really does "take a village," and we appreciate everyone who helps us to keep our communities a great place to gather together in our quest to stay happy and healthy.

Yours in Health,

The WebMD Community StaffView Thread

Even if you're on the right track, you'll get run over if you just sit there. ~Will Rogers

Posted by Byroney_WebMD_Staff

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Chronic Illness Four Years

My childhood I had several sinus infections, was tested for allergies and given every pill and nasal spray...

Posted by An_252050

My childhood I had several sinus infections, was tested for allergies and given every pill and nasal spray which never worked. This lead into getting the flu about once a month and really bad ear infections. I was always sick! When I turned 16 I developed a lump behind my neck that my mother and grandmother both have. It grows bigger with stress. When I was 18 my face swelled up on one side got huge. Given antibiotics and about three weeks later it went back to normal. This happened again when I was 20 and then another time just two years ago. Four years ago I developed the frequent urge to use the restroom after driving for an hour to college. I was running to the bathroom about 2 times in 30 minutes. The urge to relieve myself never went away and caffeine would make this feeling worse. I had been just starting an exercise routine, I worked out six days a week. Then I started getting nauseous and vomitting. Even vomitted up coffee grain looking stuff (blood). When I bent over like cleaning tasks I would have bowls full of bright red blood and diarrhea. They eventually found painful lipomas in my fat layer of my abdomen, but they just regrow with surgery. I did a functionability test to prove that I am too sick to work for the last two years, but I had to switch dr's because the last thought it was a mental condition, even with the proof of the lipomas. I freely went for the evalu and proved that I don't have anything mental going on. I have done my own research and I know that I have Dercum's Disease. This new dr. doesn't want to support disability. He wants to do more testing which I think is stupid. I have seen every specialist and done every test under the sun. He won't even read the functionabilty report! I don't know where to go and the lawyers I talk to haven't heard of Dercum's Disease. What do I do?? I have been working almost full time since I was 14- I am now 31. I have a family that I would love to support. I believe in working and it's killing me that I can't. But I don't know what more I can do. I have been doctering for two years straight- drained all of our savings from going to the Mayo- BAD EXPERIENCE! Let's just say I didn't get a good dr. They said they didn't exist but I had them surgically removed a few months later so I guess they did exist. UGH! HELP PLEASE!View Thread

Posted byAn_252050

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Joining the Circle

Hi. My husband and I would like to join the circle of those who are battling what seems to be residual...

Posted by Callday2277

Hi. My husband and I would like to join the circle of those who are battling what seems to be residual effects or chronic side-effects of RMSF. My husband was exposed in 2008 though we never found the tick. He did present with a rash but it was summer and it looked like a heat rash and we dismissed it. However after about a month, he became very ill with high fever, headache, muscle spasms and severe back and joint pain and secondary infection in the lungs that presented as pneumonia. I remember the hospitalist remarking that he had a "hurricane" in his lungs, as Hurricane Ike was just hitting our home town as he was being hospitalized. He was treated for double pneumonia by hospitalist, but my father (a physician and very good diagnostician) correctly diagnosed him sight unseen as having RMSF. We had to beg the hospitalist to test for RMSF. Was he ever shocked when the test results were diffusely positive for IgG and IgM. He was treated with Doxicycline and he recuperated.

However, like so many of you, he has residual effects that are longstanding and progressive. I was horrified to recognize so many of the symptoms listed in these posts: loss of balance, cognitive dysfunction, weakness, back pain, joint pain, chronic fatigue, hearing loss, loss of mobility, numbness in feet, failed EMG, Vit. D deficiency, b-12 deficiency, stressed adrenals, weight gain, etc.

Under the care of neurologist who has diagnosed HSP, Vit. D deficiency. Also under care of pain management clinic and orthopedic surgeon. One thing none of you have mentioned so it might not be related is inability to get restorative sleep even when sleeping for long periods of time. Does anyone share that symptom?

Also, leg function has, up till recently, been impaired only on the right side but left side is progressively worsening. Currently working but is disabled and will be unable to work soon if something does not change.

We will be re-testing for a new occurrence of tick fever and testing for the first time for LD tomorrow. It appears from what I have read that chronic or residual RMSF does not usually test positive for IgG or IgM antibodies. Please let me know if I have misunderstood.

Thank you to all of you who have gone to the effort to post and please keep us "posted." We will be praying for all of us in our circle that a breakthrough will occur.View Thread

Posted by Callday2277

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Joining the Circle

Hi. My husband and I would like to join the circle of those who are battling what seems to be residual...

Posted by An_251839

Hi. My husband and I would like to join the circle of those who are battling what seems to be residual effects or chronic side-effects of RMSF. My husband was exposed in 2008 though we never found the tick. He did present with a rash but it was summer and it looked like a heat rash and we dismissed it. However after about a month, he became very ill with high fever, headache, muscle spasms and severe back and joint pain and secondary infection in the lungs that presented as pneumonia. I remember the hospitalist remarking that he had a "hurricane" in his lungs, as Hurricane Ike was just hitting our home town as he was being hospitalized. He was treated for double pneumonia by hospitalist, but my father (a physician and very good diagnostician) correctly diagnosed him sight unseen as having RMSF. We had to beg the hospitalist to test for RMSF. Was he ever shocked when the test results were diffusely positive for IgG and IgM. He was treated with Doxicycline and he recuperated.

However, like so many of you, he has residual effects that are longstanding and progressive. I was horrified to recognize so many of the symptoms listed in these posts: loss of balance, cognitive dysfunction, weakness, back pain, joint pain, chronic fatigue, hearing loss, loss of mobility, numbness in feet, failed EMG, Vit. D deficiency, b-12 deficiency, stressed adrenals, weight gain, etc.

Under the care of neurologist who has diagnosed HSP, Vit. D deficiency. Also under care of pain management clinic and orthopedic surgeon. One thing none of you have mentioned so it might not be related is inability to get restorative sleep even when sleeping for long periods of time. Does anyone share that symptom?

Also, leg function has, up till recently, been impaired only on the right side but left side is progressively worsening. Currently working but is disabled and will be unable to work soon if something does not change.

We will be re-testing for a new occurrence of tick fever and testing for the first time for LD tomorrow. It appears from what I have read that chronic or residual RMSF does not usually test positive for IgG or IgM antibodies. Please let me know if I have misunderstood.

Thank you to all of you who have gone to the effort to post and please keep us "posted." We will be praying for all of us in our circle that a breakthrough will occur.View Thread

Posted byAn_251839

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Another person in pain

Please somebody I can't stand this much longer. The pain is too much. I take pain pills and my meds daily. I...

Posted by ida507

4 Replies | Reply | Watch This Discussion Report This | Share this:Another person in pain Please somebody I can't stand this much longer. The pain is too much. I take pain pills and my meds daily. I...

Forced doctor office visits

I am a 51 year old male and live in Anaheim, CA. I have been taking Atenolol 50mg to treat hypertension for...

Posted by Roger51

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this looks like it is self-inflicted

I have a patient with the same lesions..and they appear to be sucking lesions on the skin which show up hours...

Posted by pediapod

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this looks like it is self-inflicted

I have a patient with the same lesions..and they appear to be sucking lesions on the skin which show up hours...

Posted by pediapod

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Too young to feel this bad

My 15 yr old was diagnosed 35 days ago. Our new general practitioner got frustrated when her migraines (2+...

Posted by StarAnne

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new member here...

Hello, I live in Canada and had a brain tumor removed in 1993 that left me with chronic pain, it's a severe...

Posted by jazmama

Hello,
I live in Canada and had a brain tumor removed in 1993 that left me with chronic pain, it's a severe form of Trigeminal neuralgia after my right CN V was severed at the brainstem during surgery due to the tumor's invasion. It's ironic that the right half of my face and much of the head is numb except I do feel one sensation, searing pain as if I'm being burned by chemicals accompanied by random sharp stabbing pain on sometimes one or all three branches of the nerve.
I'm not complaining about my lot in life or the care I received. My neurosurgeon saved my life which would have been over long before my 30th birthday. I am frustrated in my 20 year search for treatment. It's been a very long road with much expense and many different types of therapies from medications too many to recount here and to various natural approaches including chanting, acupuncture, meditation, nerve blocks and more. I now must rely on the government for financial aid, again frustrating. I miss the hard working, energetic person I was but thankfully I'm keen to reinvent myself when needed.

In 2005, a new unidentified lesion was discovered on my brain that we're watching now. My neurologist wanted me to endure another major craniotomy to remove the lesion to stop the complex partial seizures I have, 20 per month on average. I'm not ok with another surgery like this, incurring more damage and deficits and less resources to cope with the pain which it would not help.

The pain reached a new level again in 2010 and I am now being treated in the pain management and palliative care unit in a cancer hospital. The medications I take are strong but have been the most effective at slowing the pain down by as much as 50% much of the time but it comes at a cost, far less energy and extended bouts brain fog.

My pain condition has made me much less able to get around and do things I used to love. I still manage to keep active with one weekly show as a jazz singer and I paint a bit when I am able but aside from my show, not a lot of contact with the outside world. While it can feel lonely, I'm glad my friends can't relate because to really understand chronic pain, one must endure it themselves for a time.

Staying positive when living with chronic pain is a huge challenge for me. I'm grateful to have music and friends i made through that in my life. Little things now matter a lot for example, buying fresh cut daisies, taking luxurious candlelit baths and remembering to breath and relax. Things like these become part of my daily routine to keep my head in a better place. As my health condition declines, it has become increasingly challenging requiring me to adapt daily and be resolved not to fall into depression.

To those here who understand or those wishing to learn about the impact of chronic pain on a person's life, I wish you luck. I'd be curious to get to know anyone else who suffers a similar condition.

Not sure I said anything helpful here but thanks for letting me get this off my chest.

Wishing you all a painfree and Happy Easter! -jazmamaView Thread

Posted by jazmama

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new member here...

Hello, I live in Canada and had a brain tumor removed in 1993 that left me with chronic pain, it's a severe...

Posted by jazmama

Hello,
I live in Canada and had a brain tumor removed in 1993 that left me with chronic pain, it's a severe form of Trigeminal neuralgia after my right CN V was severed at the brainstem during surgery due to the tumor's invasion. It's ironic that the right half of my face and much of the head is numb except I do feel one sensation, searing pain as if I'm being burned by chemicals accompanied by random sharp stabbing pain on sometimes one or all three branches of the nerve.
I'm not complaining about my lot in life or the care I received. My neurosurgeon saved my life which would have been over long before my 30th birthday. I am frustrated in my 20 year search for treatment. It's been a very long road with much expense and many different types of therapies from medications too many to recount here and to various natural approaches including chanting, acupuncture, meditation, nerve blocks and more. I now must rely on the government for financial aid, again frustrating. I miss the hard working, energetic person I was but thankfully I'm keen to reinvent myself when needed.

In 2005, a new unidentified lesion was discovered on my brain that we're watching now. My neurologist wanted me to endure another major craniotomy to remove the lesion to stop the complex partial seizures I have, 20 per month on average. I'm not ok with another surgery like this, incurring more damage and deficits and less resources to cope with the pain which it would not help.

The pain reached a new level again in 2010 and I am now being treated in the pain management and palliative care unit in a cancer hospital. The medications I take are strong but have been the most effective at slowing the pain down by as much as 50% much of the time but it comes at a cost, far less energy and extended bouts brain fog.

My pain condition has made me much less able to get around and do things I used to love. I still manage to keep active with one weekly show as a jazz singer and I paint a bit when I am able but aside from my show, not a lot of contact with the outside world. While it can feel lonely, I'm glad my friends can't relate because to really understand chronic pain, one must endure it themselves for a time.

Staying positive when living with chronic pain is a huge challenge for me. I'm grateful to have music and friends i made through that in my life. Little things now matter a lot for example, buying fresh cut daisies, taking luxurious candlelit baths and remembering to breath and relax. Things like these become part of my daily routine to keep my head in a better place. As my health condition declines, it has become increasingly challenging requiring me to adapt daily and be resolved not to fall into depression.

To those here who understand or those wishing to learn about the impact of chronic pain on a person's life, I wish you luck. I'd be curious to get to know anyone else who suffers a similar condition.

Not sure I said anything helpful here but thanks for letting me get this off my chest.

Wishing you all a painfree and Happy Easter! -jazmamaView Thread

Posted by jazmama

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Letter for In Network Only Providers

I need to create a letter that I can give to the hospital to guarantee that the only services I receive are...

Posted by wenpeek

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MS, Meds & Disabled Housing

It been a while since I have been on. I had MS since 1998. Despite the million relapses and fatigue. I am...

Posted by Cactibabe1

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MS, Meds & Disabled Housing

It been a while since I have been on. I had MS since 1998. Despite the million relapses and fatigue. I am...

Posted by Cactibabe1

0 Replies | Reply | Watch This Discussion Report This | Share this:MS, Meds & Disabled Housing It been a while since I have been on. I had MS since 1998. Despite the million relapses and fatigue. I am...

frequent urinating

our 5 year old son has had two days of frequent urinating. we noticed both times, he did have glasses of milk...

Posted by jjc16105

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Whiplash

I have chronic shoulder and neck pain from whiplash from a car accident I was in in September 2011. I went...

Posted by Grrrretchen

Take the Poll

Some things to keep me motivated when I get stuck:

1 Reply | Reply | Watch This Discussion Report This | Share this:Whiplash I have chronic shoulder and neck pain from whiplash from a car accident I was in in September 2011. I went...

Help! Re: Chin Injury

Hi, I hope someone can help me. When i was 14 i grazed off half my chin (on the right side of my face) in...

Posted by monkface

Hi,
I hope someone can help me.

When i was 14 i grazed off half my chin (on the right side of my face) in a bmx accident. The doctor my mum took me to ended up giving me stitches, even though he expressed concern he didnt want me to have any side effects. So at first he didn't want to do stitches but for some reason he did. So i must have lost about 6cm sqared of skin/flesh, as the doctor had to pull the graze together to stitch it. I have since learned you are not supposed to stitch a graze, especially as i wasn't losing much blood.

Now im 27 and have had this problem which has been driving me crazy. It feels like one side of my face is being pulled down, the same side as which i lost half my chin. It feels like the right side of my mouth is being distorted and is tense, and i used to get wierd twitches on the right side of my nose. I feel like I have not been able to relax for at least 7 years and have experienced bad eyesight and facial tension which began around the same time as I suffered the injury. My eyes do not relax and I always have strange tension in my right eye. I also suffer from dermatitis which mostly effects the right side of the face.

I discovered there could be a connection last year when i realised when i push up on my chin and that side of the face, my whole world relaxes and i feel like a weight has been taken off not just my face but it feels like my stomach relaxes too and i can breath better, as well as my eyestrain dissapearing. It also feels like my neck is too tight and if i pull the skin a bit i feel my adams apple relax a bit and it feels like i taste more oxygen.

I have seen at least 12 doctors and they tell me something different, but none see it as a problem.

So my question is, if you lose 6cm squared (approx) of skin and flesh on your chin, and your neck and chin are then stretched together to be sewn into place, and you are only 14 years old and have a lot more face/head/neck growing to do, is there ANY CHANCE AT ALL it could cause side effects in the future?

All the doctors and specialists here just say i need to go on antidepressants or get botox injections in my cheek or they say its all in my head (seriously when did every doctor become a new age hippy and bovine toxin pusher??)
Only one doctor out of 12 agreed that you are not supposed to stitch a graze, the others either confidently told me there was zero chance of side effects or just looked confused.

I got an MRI but it takes 9 months to see a neurologist here apparently so I'm worried it could get worse. No one takes me seriously and I'm scared because I do not like living with this feeling.

Any help or suggestions would be welcome... I'm competely on my own because my mum is sick and my family looking after her and no one really believes me because the doctors don't.

Also the skin around my neck seems pretty numb which i discovered last week. If i pinch it my hardest I will get a slight feeling... so im not sure if thats normal or not.View Thread

Posted by monkface

Take the Poll

Do you think there is a chance I am experiencing side effects from the chin injury/procedure I described in the post?

0 Replies | Reply | Watch This Discussion Report This | Share this:Help! Re: Chin Injury Hi, I hope someone can help me. When i was 14 i grazed off half my chin (on the right side of my face) in...

Rmsf

I was dx with rmsf somewhere around august or october 2012. I traced my tracks and figured I first got it...

Posted by shmontana

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Bathroom Safety Survey

Hi, I am a senior design student currently working on a design project related to seniors. The project is...

Posted by jasont416

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Port issues

I had a port installed for my chemo treatments, blood work etc during my breast cancer treatments. My port...

Posted by An_249744

0 Replies | Reply | Watch This Discussion Report This | Share this:Port issues I had a port installed for my chemo treatments, blood work etc during my breast cancer treatments. My port...

MD VIP

My doctor is joining this program. We have been asked to pay a 1500.00 membership fee each year. This takes...

Posted by sherryp843

0 Replies | Reply | Watch This Discussion Report This | Share this:MD VIP My doctor is joining this program. We have been asked to pay a 1500.00 membership fee each year. This takes...

Hospice care must use tigertext hipaa?

We are looking to put our Dad in a hospice care facility in New York. We have looked at several in the...

Posted by chancedanger

0 Replies | Reply | Watch This Discussion Report This | Share this:Hospice care must use tigertext hipaa? We are looking to put our Dad in a hospice care facility in New York. We have looked at several in the...

Back pain, Bulging discs, spinal stenosis ETC..

Im 27 now, and in 2010 I fell while I was 7 months pregnant. I fell off of 4 steps and landed right on my...

Posted by An_249418

0 Replies | Reply | Watch This Discussion Report This | Share this:Back pain, Bulging discs, spinal stenosis ETC.. Im 27 now, and in 2010 I fell while I was 7 months pregnant. I fell off of 4 steps and landed right on my...

I cannot get warm!

It has been below zero outside for 2 weeks now and even though I keep temps indoors around 75 degrees, I...

Posted by erika3864

0 Replies | Reply | Watch This Discussion Report This | Share this:I cannot get warm! It has been below zero outside for 2 weeks now and even though I keep temps indoors around 75 degrees, I...

BARD POWER PORT CATHETER UPDATE -- nov 25, 2012

hello, all -- this is the most recent list of posts/threads/articles on problems with bard power port...

what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.

Posted by susiemargaret

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FDA COMPLAINTS --

hello, all -- this is a summary of the webMD threads and articles on the FDA procedures for reporting...

what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.

Posted by susiemargaret

0 Replies | Reply | Watch This Discussion Report This | Share this:FDA COMPLAINTS -- hello, all -- this is a summary of the webMD threads and articles on the FDA procedures for reporting...

Alzheimers - What an emotional conflict

My 79 year old mother has suffered with Alzheimers for years and is now in stage 6; My dad (82) can no longer...

Posted by An_249092

1 Reply | Reply | Watch This Discussion Report This | Share this:Alzheimers - What an emotional conflict My 79 year old mother has suffered with Alzheimers for years and is now in stage 6; My dad (82) can no longer...

a bad bard power port

I had a bard port placed for chemo in sept. of this year. My first round of chemo the nurses couldn't access...

Posted by trisha55

1 Reply | Reply | Watch This Discussion Report This | Share this:a bad bard power port I had a bard port placed for chemo in sept. of this year. My first round of chemo the nurses couldn't access...

RMSF - diagnosed two months ago

I was diagnosed with RMSF two months ago after being very sick with fever, severe headache, neck, spinal pain,...

Posted by Lynda723

0 Replies | Reply | Watch This Discussion Report This | Share this:RMSF - diagnosed two months ago I was diagnosed with RMSF two months ago after being very sick with fever, severe headache, neck, spinal pain,...