Status
Not open for further replies.

missieisourangel

New member
Joined
Dec 27, 2008
Messages
4
Reason
Other
Country
US
State
WV
City
Ripley
One of my best friends is in really bad shape and I want to share with you her story...I just want opinions...I realize that you are not doctors or such...just want your opinion of what we should do next! With Missie gaining muscle strength (as you will read)....I am afraid it might be a misdiagnosis.....please read and let me know what you think? Thanks so much in advance!

Missie Is Our Angel

It all started back on April 11, 2005. Missie was on her way to work when a girl pulled out of her driveway and hit Missie in the right front fender which sent Missie across the road into the hill side and flipped her car. The good thing was Missie was wearing her seatbelt. As you could imagine, Missie was shook up and panicked. Her first thought was to get out of the car. So, she did by popping the seatbelt. Which being upside down caused her to drop down on her head and caused neck and back injuries.

Missie went to see Dr. Murrita Bolinger at the Ravenswood, WV clinic. Dr. Bolinger was her primary physician at the time. Missie was sent to see a physical therapist in Parkersburg, WV and was advised there would not be any permanent damage. Missy went through a years worth of physical therapy and eventually got a little better but continued to have neck and back pain. The pain was so bad she could not even get in the floor to play with her daughter for long periods of time as she would do prior to her accident. Almost 3 full years went by with Missie having a pretty normal life, well as normal as it could be with neck and back pain.

In February of 2008, it was cold and snowing. Missie had walked out to start her car to let it warm up. On her way back in she slipped and fell off the ramp on the porch and landed on her tail bone. At the time she was just sore and thought nothing of it and went on with her daily life. Then in April, Missie started to experience muscle weakness in her arms. She did exercises on a daily basis to try to keep her strength. It did slow the process down. She went to see Dr. Louden in Parkersburg, WV. At that time they did an EMG test and found abnormalities in the right side, but nothing was really done about it. By May of 2008, Missie had to prop her arms to be able to put her make-up on and fix her hair. As the months went by, Missie struggled with muscle weakness in her arms and neck. She continued to drive and work until she couldn’t anymore.

On August 12th 2008, Missie was referred to Dr. Ghodsie in Gallipolis, Ohio and was told she did not need surgery on her neck. And then on August 19th 2008, she went back to Dr. Louden and had an EMG, spinal tap, and was sent to Camden Clarke Memorial Hospital to have blood work and urine test. Test results all came back normal. On August 26th, 2008, she went to Ruby Memorial in Morgantown, WV and had another EMG and was diagnosed with ALS. By this time, Missie had lost her arm strength and proved to the doctors that it was coming back by reaching over and getting a graham cracker on her bed. The doctors just thought she had false hope and didn’t do or say anything different. They stuck with their diagnosis of ALS. On August 31st 2008, Missie went to church and was anointed. By the end of the service she had lifted her hand off of the seat on to her lap. September 3rd 2008, Missie stared seeing a chiropractor, which would work with her neck. In result of the chiropractor, Missie was able to breathe better and hold her neck up.

Towards the end of September of 2008 is when Missie’s condition took a drastic change. Missie was having trouble breathing and was convinced to go to the hospital. An ambulance was called and she was transported to Pleasant Valley Hospital, Point Pleasant, WV where she was admitted. Doctors would come in and talk to her but as soon as they saw her diagnosis on her chart, that’s what they went with. She would beg for a second opinion but they would just look at her and agree with the ALS diagnosis. While in the hospital her breathing got worse.. She would tell the nurses she wasn’t getting air to her lungs and they would look at the machine and tell her that her oxygen level was fine. After fighting with them for 3 days about it, the next thing you knew was that they were calling code blue. They had to do CPR and shock her 3 times to get her back. She was then put on a ventilator. She decided to get a trachea so that she could try to watch her daughter grow up and possibly find someone that would listen to her about her symptoms and try to see if something could be done. She was transported to St. Mary’s hospital in Huntington, WV to have the trachea and feeding tube put in. Once those procedures were done she was transported home after Dr. William Casto agreed to be on call around the clock for her, but has only came to the house once since getting home. Dr. Casto is a good doctor but not as good as we had hoped for. He has mentioned doing surgery on Missie’s neck once she comes off the trachea.

At this current time, Missie is home in a hospital bed and doesn’t have much use of her body. Her leg muscles are getting stronger and she has discovered that her hand and arm muscles are starting to come back. She has suffered with pneumonia and MRSA. On December 29, 2008, Missie went to Pleasant Valley Hospital to have a pick line put in to be able to take 6 weeks worth of antibiotics for the MRSA. After all the struggling, Missie came to find out that her trachea was supposed to be changed every 4 to 6 weeks. She has had it for 3 months and it has never been changed. However, a nurse wants to help Missie out by changing it for her off the clock just to get it done once she has had a least 3 weeks of the antibiotics.

Missie feels that she is a mystery and no one will ever be able to help her get through this and find out what really is going on. Missie does not believe she has ALS due to her strength coming back in her upper body, in which per the internet, this does not happen once you lose your muscle in the upper body. Once they are gone they are gone. Our goal now is to find that someone that will help and we mean really help to find out what is going on an and help her get her life back.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi. wow your friend has gone through so much ,she sounds like a real fighter.
firstly, when you say areas are getting stronger how much are we talking about?
if it is something treatable she deserves the chance to find out what it is .
hopkins i think is supposed to be the best or mayo clinic.
could someone try to get her a referal to one of these?
maybe it is not als but the problems she has had with her neck and back are causing the symptoms.
i know you said she had a abnormal emg but the other problems could be causing the "als",having said that the severity of her condition may not change the outcome even if it was not.
try hopkins or mayo for a second opinion,then i think her quality of care is the top priority.
she is so blessed to have such a caring friend,godbless you both.
 

missieisourangel

New member
Joined
Dec 27, 2008
Messages
4
Reason
Other
Country
US
State
WV
City
Ripley
Her strength is pretty much back in her legs and starting in her hands, arms, and neck. Your right, she is a fighter and I will do anything to help her, but getting her doctors to do anything is almost impossible. This is a scaary situation and all i want to do is help her get her life back..Thank you so much for your opinion..It means alot to hear from others and get the support we are looking for..Thanks again!
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
I am curious as to how much strength has come back in her legs. Are her legs strong enough to support her in walking unaided?

I agree that if she is steadily regaining strength, Missie should be at the least, reevaluated.

Zaphoon
 

missieisourangel

New member
Joined
Dec 27, 2008
Messages
4
Reason
Other
Country
US
State
WV
City
Ripley
The strength in her legs is amazing. Not sure if there is enough back yet for her to be able to walk. Her upper body is not back as much which makes it hard to balance. But with her neck muscles comming back, i dont think it will be long before we can try it out.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi,is missie trying to do any physio? can you do some with her?
if this does help and she gets some exceptable amount of movement back this will prove the doctors wrong.
i think sooner or later they will have to reavaluate her like zaphoon said.
in the meantime physio and better care are the main priorities.
please be carefull with any physio,in case it is a problem with her neck or back.
i am hoping,praying and rooting for her:)
 

missieisourangel

New member
Joined
Dec 27, 2008
Messages
4
Reason
Other
Country
US
State
WV
City
Ripley
Yes we do the range of motion with her twice a day and that is what has helped her..Plus she does what she can herself throughout thee whole day.:lol:
 
Status
Not open for further replies.
Top