Aa
Symptom list
I compiled a list of my symptoms and added dates as was suggested by many of you in preparation for my appt on Wed. Here is a copy of my list. Does it seem thourough?? I'm also hoping it is not too "wordy"?? Any suggestions?
• Difficulty in concentration/thinking/focusing.
( began Summer 2007)
• Trouble finding the right words
(began Spring 2009)
• Forgetfulness
(began Summer 2007)
• Sometimes slurring words (when I feel bad)
(began Fall 2009)
• Headaches-sometimes lasting for weeks
(worsening around October 2009)
• Neck pain and popping
(Fall 2009)
• Back pain
(Fall 2009)
• Tingling down spine-very bothersome-numb spot on spine
(began Winter 2008, worsening in Fall 2009)
• Body aches (feels flu-like)
(On and off since Spring 2009)
• Sharp/stabbing burning pain in leg
(Fall 2009)
• Hard time getting up in the morning/Feels like I haven’t slept at all/very stiff and in pain/very groggy
(Worsening Fall 2009)
• Stiffness/pain in the morning
(Worsening Fall 2009)
• Severe stomach bloating, gas, heartburn
(Began Fall 2008, on and off since)
• Choking on liquids
(liquids seems to “go down the wrong way” almost daily)
(began Fall 2009).
• Rash on and off with rough patches on various areas of body
• Difficulty in concentration/thinking/focusing.
( began Summer 2007)
• Trouble finding the right words
(began Spring 2009)
• Forgetfulness
(began Summer 2007)
• Sometimes slurring words (when I feel bad)
(began Fall 2009)
• Headaches-sometimes lasting for weeks
(worsening around October 2009)
• Neck pain and popping
(Fall 2009)
• Back pain
(Fall 2009)
• Tingling down spine-very bothersome-numb spot on spine
(began Winter 2008, worsening in Fall 2009)
• Body aches (feels flu-like)
(On and off since Spring 2009)
• Sharp/stabbing burning pain in leg
(Fall 2009)
• Hard time getting up in the morning/Feels like I haven’t slept at all/very stiff and in pain/very groggy
(Worsening Fall 2009)
• Stiffness/pain in the morning
(Worsening Fall 2009)
• Severe stomach bloating, gas, heartburn
(Began Fall 2008, on and off since)
• Choking on liquids
(liquids seems to “go down the wrong way” almost daily)
(began Fall 2009).
• Rash on and off with rough patches on various areas of body
Thanks for the prayers. I'll take all I can get :)
I promise I'll go demand a blood test if the rash gets worse. At this time it just seems a bit red and slightly swollen on my cheeks and above the bridge of my nose. A few days ago there were raised red rough welts. It comes and goes.
Right now I am so used to the various aches and pains that I try to ignore them. But the one thing that is really bothering me are my eyes. Started to get real bad about 6 weeks ago. It takes me a long time to read and write these posts because I can't focus. I have the brightness on my monitor turned off as far as it will go and have to squint to keep out as much light as possible. I changed the refresh rate on the monitor which has helped some. It throbs behind my eyes all waking hours & feels swollen near the outside corners and half way underneath each eye tho there's no visible swelling. Mom took me to see an eye dr who could find nothing wrong.
How is it possible so many of us have all these strange symptoms and not one dr anywhere can find anything wrong????
I promise I'll go demand a blood test if the rash gets worse. At this time it just seems a bit red and slightly swollen on my cheeks and above the bridge of my nose. A few days ago there were raised red rough welts. It comes and goes.
Right now I am so used to the various aches and pains that I try to ignore them. But the one thing that is really bothering me are my eyes. Started to get real bad about 6 weeks ago. It takes me a long time to read and write these posts because I can't focus. I have the brightness on my monitor turned off as far as it will go and have to squint to keep out as much light as possible. I changed the refresh rate on the monitor which has helped some. It throbs behind my eyes all waking hours & feels swollen near the outside corners and half way underneath each eye tho there's no visible swelling. Mom took me to see an eye dr who could find nothing wrong.
How is it possible so many of us have all these strange symptoms and not one dr anywhere can find anything wrong????
Lupus can be ruled out with a simple blood test. Please promise me that if your rash gets worse, you will go straight to the hospital and demand an arthritis panel be taken to rule out lupus. If you show up with a list of lupus like symptoms and a butterfly rash on your face, they'll surely do a blood test. Again, that rash is the classic sign for lupus.
I really feel for you. it's hard enough dealing with all the medical stuff without having to deal with no insurance. I pray that you will be able to get someone to do something to help you.
Kristin
I really feel for you. it's hard enough dealing with all the medical stuff without having to deal with no insurance. I pray that you will be able to get someone to do something to help you.
Kristin
Hi Charley
It's a long list .. LOL .. probably why no doctor will sit still long enough to read it. Hope your new neuro can help you.
Hi MrsA & Kristin
I looked up the butterfly rash and while it's in the right place, cheeks and nose, it hasn't gotten near as mean looking as the pics I've seen so I don't know. The clinic I go to is not equiped to deal with much more than a few very common problems; colds, flu, high bp or cholesterol & pregnancy. They seem to realize that I have a bigger problem but can't do much for me. They refer me out to the various teaching hospitals around town but even they like to get paid and I usually get denied. The ones that I have gotten to see don't waste much time or effort on me.
I need to clarify the balance problem. I haven't hit the ground yet tho I've come mighty close a time or two. I move slowly & it seems there's always something around for me to grab on to. Good thing as I'm very afraid of breaking a bone. What happens is one leg or the other, mostly left, will just give out a little. Like for a moment I lose a connection, short circuit. Cauda equina syndrome has been brought up a time or two as well as femoral nerve damage. But no firm dx.
The ER is a great place for accident victims or heart attacks. But I've learned that if they can't SEE a particular problem then you have no reason to be there and they send you home with a script for pain pills or anti anxiety drugs. I have a pile of unfilled scripts from ER visits.
My next step, MrsA, will probably be into a mound of poop.
LOL
Gotta laugh cuz I'm tired of crying.
Hope everyone has a much better year than the last :)
It's a long list .. LOL .. probably why no doctor will sit still long enough to read it. Hope your new neuro can help you.
Hi MrsA & Kristin
I looked up the butterfly rash and while it's in the right place, cheeks and nose, it hasn't gotten near as mean looking as the pics I've seen so I don't know. The clinic I go to is not equiped to deal with much more than a few very common problems; colds, flu, high bp or cholesterol & pregnancy. They seem to realize that I have a bigger problem but can't do much for me. They refer me out to the various teaching hospitals around town but even they like to get paid and I usually get denied. The ones that I have gotten to see don't waste much time or effort on me.
I need to clarify the balance problem. I haven't hit the ground yet tho I've come mighty close a time or two. I move slowly & it seems there's always something around for me to grab on to. Good thing as I'm very afraid of breaking a bone. What happens is one leg or the other, mostly left, will just give out a little. Like for a moment I lose a connection, short circuit. Cauda equina syndrome has been brought up a time or two as well as femoral nerve damage. But no firm dx.
The ER is a great place for accident victims or heart attacks. But I've learned that if they can't SEE a particular problem then you have no reason to be there and they send you home with a script for pain pills or anti anxiety drugs. I have a pile of unfilled scripts from ER visits.
My next step, MrsA, will probably be into a mound of poop.
LOL
Gotta laugh cuz I'm tired of crying.
Hope everyone has a much better year than the last :)
That's a good list. I was thinking of revising my overly wordy list as I have a new neuro appointment coming up in a couple of weeks. I have the falling down thing too. hugs Charley
I agree with Kristin about the rash you could have lupus especially with the other symptoms as well especiall the red palms and fingers.
http://www.merck.com/mmhe/sec05/ch068/ch068b.html
I dont understand the medical route in the USA, it must be awful not having the means to see a doctor how barbaric is that. And we moan in the UK about our system. I wont ever moan about it again I can tell you.
Did you ever get tested for Lupus?
I again agree with Kristin if you are falling you should go to A&E.(ER).
It must be very hard for you.
I am being investigated for lupus as well and have had one positive blood result but the second one was negative. I too get swollen hands during the day and odd swellings around my feet.
What is your next step?
Happy New Year to everyone as well. Mariaxxx
http://www.merck.com/mmhe/sec05/ch068/ch068b.html
I dont understand the medical route in the USA, it must be awful not having the means to see a doctor how barbaric is that. And we moan in the UK about our system. I wont ever moan about it again I can tell you.
Did you ever get tested for Lupus?
I again agree with Kristin if you are falling you should go to A&E.(ER).
It must be very hard for you.
I am being investigated for lupus as well and have had one positive blood result but the second one was negative. I too get swollen hands during the day and odd swellings around my feet.
What is your next step?
Happy New Year to everyone as well. Mariaxxx
Hmmm...Does the rash on your face look like a "butterfly"...is it on the bridge of your nose and both cheeks?? Have you been tested for lupus? If the rash does look like that, it is the hallmark sign of lupus.
And I'm so sorry about the no insurance...that must make it really tough. If you are having episodes where you are constantly falling, could you just go to the ER? maybe, if they see you falling down and your other symptoms, they would admit you for testing? Most hospitals have charitible organizations that will pay the bills for those unable to pay.
And I would make a list, just as I made mine and hand it to the Doctor. Insist they hear ALL of your symptoms-not just one at a time. They are more than likely all related and need to be looked at as a group.
I hope you are able to find answers.
Kristin
And I'm so sorry about the no insurance...that must make it really tough. If you are having episodes where you are constantly falling, could you just go to the ER? maybe, if they see you falling down and your other symptoms, they would admit you for testing? Most hospitals have charitible organizations that will pay the bills for those unable to pay.
And I would make a list, just as I made mine and hand it to the Doctor. Insist they hear ALL of your symptoms-not just one at a time. They are more than likely all related and need to be looked at as a group.
I hope you are able to find answers.
Kristin
I have all what you mentioned plus :
balance problems - constantly falling over, like drunk
loss of voice on and off
floaters in left eye - began when started gabapentin injuly 08
involuntary arm/leg jerks
cold spots on forearm and calves-feels wet but isn't
pain behind eyes, light sensitivity & blurred vision - started about 6 weeks ago
alternating chills and sweats
very red palms/fingers
swollen hands - on and off during the day
tinnitus
The rash you mentioned I have only on my face, comes and goes, sometimes itches.
None of the doctors I've seen will listen. One item at a time they tell me and now that I'm in the state system (no ins) I have even less of a chance at a dx. *sigh*
balance problems - constantly falling over, like drunk
loss of voice on and off
floaters in left eye - began when started gabapentin injuly 08
involuntary arm/leg jerks
cold spots on forearm and calves-feels wet but isn't
pain behind eyes, light sensitivity & blurred vision - started about 6 weeks ago
alternating chills and sweats
very red palms/fingers
swollen hands - on and off during the day
tinnitus
The rash you mentioned I have only on my face, comes and goes, sometimes itches.
None of the doctors I've seen will listen. One item at a time they tell me and now that I'm in the state system (no ins) I have even less of a chance at a dx. *sigh*
i agree with theresa--the above list is very clear and concise and can't be anything but helpful for your during your consultation. i know you will do just great during your appointment! please let us know how it goes when you have a moment.
good luck and take care~
binx
good luck and take care~
binx
Thanks!
I think it's very thourough.If you have alot of issues it cant help but be wordy. The dates let the doc know the time line....
Agin good luck!
Take Care Theresa
Agin good luck!
Take Care Theresa
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