A diagnosis for my daughter? - Page 3

hyacinth003 · ‎03-12-2010

@YorkieonmyPillow wrote:
Your poor daughter! I can't believe she is still going through this.

If this were my daughter I believe I would go insane were she in this much pain........................XO

I have been going insane! My husband and I have been going crazy not being able to help her.

Hyacinth

NickNack · ‎03-10-2010

@hyacinth003 wrote:
@KarenQVC wrote:
@hyacinth003 As I recall, this is farther along than you have been, with a diagnosis, a doctor, and meds. Keep working with the dr. around medication and other issues. I know that you know this.

It may be time for your daughter to apply for disability, too. Tell her when she gets well, she can get off it. She could use the Medicare benefits, too.

Yes, it is farther along than we've been. I think we will start the application process for disability for her. Without a diagnosis, I figured we would get nowhere! Of course, I am hoping that perhaps the med will work and she will be much better. She isn't working enough to support herself, and a lot of this time, I don't think she should even BE working. Her job requires standing, walking in a large store, and even getting from the parking lot is hard. She gets unsteady (the part I am really concerned about) and has fallen a couple times. She wants to work, and as a young person, should be working. But, she really shouldn't have been.

Hyacinth

Make sure you use an attorney for the disability process. I have a friend who tried to get it on her own and was turned down twice. She was very thorough and answered all the questions completely. When she got an attorney she was approved. Attorneys don't charge you unless they win the case. Then they take their fee out of your settlement. Good luck. It sounds like she really needs to be on disability.

The Bluebird Carries The Sky On His Back"
-Henry David Thoreau

twinkies · ‎03-11-2010

Has he been evaluated for multiple sclerosis ? the weakness in her legs sounds like M. s.

cathy from ma

hyacinth003 · ‎03-12-2010

@twinkies wrote:
Has he been evaluated for multiple sclerosis ? the weakness in her legs sounds like M. s.

cathy from ma

That was my first concern, Cathy. My mother had MS (her grandmother) and it did remind me of her symptoms.

We have seen a neurologist, and she has had an MRI of the brain, cervical, thoracic, and lumbar spine. She has also had an EMG. They feel she DOES NOT have MS.

The weakness in her legs is my biggest concern!

Hyacinth

hyacinth003 · ‎03-12-2010

@Nicknack wrote:
@hyacinth003 wrote:
@KarenQVC wrote:
@hyacinth003 As I recall, this is farther along than you have been, with a diagnosis, a doctor, and meds. Keep working with the dr. around medication and other issues. I know that you know this.

It may be time for your daughter to apply for disability, too. Tell her when she gets well, she can get off it. She could use the Medicare benefits, too.

Yes, it is farther along than we've been. I think we will start the application process for disability for her. Without a diagnosis, I figured we would get nowhere! Of course, I am hoping that perhaps the med will work and she will be much better. She isn't working enough to support herself, and a lot of this time, I don't think she should even BE working. Her job requires standing, walking in a large store, and even getting from the parking lot is hard. She gets unsteady (the part I am really concerned about) and has fallen a couple times. She wants to work, and as a young person, should be working. But, she really shouldn't have been.

Hyacinth
Make sure you use an attorney for the disability process. I have a friend who tried to get it on her own and was turned down twice. She was very thorough and answered all the questions completely. When she got an attorney she was approved. Attorneys don't charge you unless they win the case. Then they take their fee out of your settlement. Good luck. It sounds like she really needs to be on disability.

Her pain level is such that she can barely work. Even if she could get more hours, I don't think she could do it. She is not self supporting. If not for living with us, she couldn't do it. So, I think she should start the application process. Your suggestion to get an attorney could be right on. I know the process often includes being rejected!

So, we will probably get an attorney to navigate!!

Hyacinth

Daisy Sunflower · ‎10-26-2010

chrystaltree · ‎05-10-2010

@Daisy wrote:
Interesting that they can't find anything wrong with her. Is she overweight or obese? If so, maybe that's part of the problem...she's not getting enough exercise and feels awful. What do you think of all this?

I was just going to ask you if she was trying to get on disability, but I see you've mentioned that.

Seriously? You think being overweight would cause those symptoms..... Did you even read the op's post?

Noel7 · ‎03-09-2010

@Gram W wrote:
I have had arthritis in my hands for many years and getting worse. I pushed my PCP to refer me to a specialist. It took 3 years. The first thing they did was blood tests, x-rays, etc. I not only have arthritis but also lupus and fibromyalgia. I was given the devil for not coming earlier as I donot need to be this bad. Much of what you have said about her pain is also true for me. I am so glad that she has found help and has your support. If you have any questions or doubts write it down and ask the doctor. I was told to keep a list of various difference in my body at any time and bring it each visit. My doctor said he will never think i am a hypochondriac. Autoimmune diseases can be different in different people and he wants to have good monitoring of my body and how it is reacting to my medicines. Any changes will be checked and medicines or dosages will be changed as needed. I do not have a hot tub but I have found that these do help. The heat of the moving water feels great and the boyancy takes the pressure off my muscles and joints. My 72 year old body will not give up. Aside from chicken pox this is the first time in my life that I have ever been sick. I pray that your young lady has found the medical help that she needs to help her have the very best future possible. Oh! The tub I used was part of early PT therapy before I was referred. The classes were at a local health center. If she has access to such a place with an exercising pool (3' -5' deep) and a jacuzzi it might help her. I got a RX for it but my insurance would only pay for 2 months. Good luck to you both. ;-)
************************

Hi @Gram W

I may have good news for you, I think perhaps the doctor misdiagnosed you.

Those of us who have lupus (SLE) cannot say we have never been sick in our life except for chicken pox.

We are sick very often, usually beginning in our 20s. Many cannot have children and many die before they reach your age.

I, myself, have been seriously ill quite often, lupus is a daily struggle.

I am hospitalized usually one to two times a year with a life threatening lupus flare.

Lupus attacks our lungs, heart and kidneys. Many die from what is done to their organs, especially their kidneys.

We catch colds easily and are often hospitalized because it turns into pneumonia for us.

Since you are lucky enough to never have been sick, I'm hoping that means no lupus. Best wishes.

Noel7 · ‎03-09-2010

@hyacinth003

I'm really sorry to discover this is still going on with your daughter, and I understand how awful it is to be a mother and have her suffering with pain.

She's in my prayers for a diagnosis and treatment.

hyacinth003 · ‎03-12-2010

@Daisy wrote:
Interesting that they can't find anything wrong with her. Is she overweight or obese? If so, maybe that's part of the problem...she's not getting enough exercise and feels awful. What do you think of all this?

I was just going to ask you if she was trying to get on disability, but I see you've mentioned that.

She has gained some weight SINCE these symptoms started. She was extremely active prior to the pain and weakness. She was working full time in a fast food restaurant that worked them into the ground! She walked to the train, went to Chicago, and walked the lakefront and back. She was not overweight when the symptoms hit. She lived the life of an active young woman in her 20's. For a long time, she didn't even drive. She rode a bicycle for miles.

It is really sad to see how vital and active she was to the pain and weakness she has now.

Hyacinth