My wife (46) has been diagnosed with fibromyalgia for over 2.5 years now and has all of the usual symptoms but recently newer more serious issues have come to light. She can no longer drive....she has not driven for over a year now (maybe longer). I can see her energy levels have decreased dramatically over the last while and even more-so recently. She used to be very active around the house and yard and was always extremely organized. She always paid attention to the smallest of details. She took care of our bills and banking, cleaning the house, and laundry....all while working full time as a caregiver in a home with 4 clients with varying degrees of physical and mental disabilities. In the past she was a very sharp and organized person - attentive to others needs. She has changed....more-so recently.
The new issues are:
She tires very easily and will have a nap a couple of times a day...some days not so much. With a little activity, shopping or just walking in the mall for exercise, she gets very tired and has to go home and rest (I can see it in her face). On occasion she displays an inability to concentrate, and seems frustrated when I try to explain something I find interesting...this is not like her at all. She has had stabbing pains in one leg, double vision-an "aura" off to the left of her eye, balance issues (she has to walk with a shopping cart for balance - in the mall), heat intolerance, concentration, calculation, typing problems, her organizational skills have nose dived from very organized and precise to mid-low...confused...missing details she would normally take care of, memory loss, forgetting tasks she is doing mid stream, incontinence while shopping...
One day she and I went upstairs to the neighbors. They have two children 2 and 8. Like all children they were loud, vying for attention (I also was loud)...within a minute or two her face went white and she had a blank stare. We had to leave. I have noticed this same look when we are shopping at Walmart...white face, almost unresponsive...one word answer or not at all...for 5 or 10 mins or until she gets fresh air....
One day we were doing the dishes....she gestured to her left and asked me to pass her a "hash brown"....the only thing to her left was a roll of paper towels...I asked her if she was OK....she said yes...she looked fine...not tired at all. We joked about the hash browns....I was scared.
One day, sorting some clothes to take to charity, she complained she felt hot and like she had a large boil, about the size of a grape fruit, on her neck....she knew in reality that there was no boil but she said it felt so real.
She mentioned she has headaches almost every day (not migraines) but takes nothing for them....she does not want to be reliant on headache medication....this is typical for her. She also said her right hip and leg bother her almost every day...it feels like an electrical shock and a dull aching pain. She also mentioned her feet feel like she has a large square cotton pad on her toes and balls of both of her feet....this is a daily issue. I have to say she rarely if ever complains of these problems....I have usually have to initiate the conversation.
Some of these symptoms come and go.
Anyway...
GP ordered an MRI and set her up with a Neurologist. Neurologist sent her for vision and motor skills testing (I don't know what the tests are called)...also blood tests. We got together with him in his office to discuss the results of these tests....not sure about the other tests but the MRI came back with multiple lesions. He suggested these could be caused by MS and set her up for a LP. He gave us the distinct impression she may have MS and that the lesions were significant....therefore the LP. Before the LP he sent her for more testing.....electrical shocks to her legs and arms or something.....very painful she said. Here is where it gets strange....
On our visit to find out the results the Neurologist kind of did an about face...LP was clear....no word on the other tests (he is not very forthcoming? talkative?) He said she did not have MS. The lesions were now insignificant, probably caused by migraines or sleep apnea (she does have sleep apnea and had migraines years ago). He implied that maybe she was depressed...it's like he thought she was nuts....faking it! No other information was given to us....No idea of what my be causing these new issues...conversation kinda ended on the depression note, but she did say she did not feel depressed and just wanted to know what was wrong with her and why she was getting worse.
She is far from a hypochondriac and although she takes medication for mild depression she insists she is not depressed. I agree with her...she has been very happy and content....but obviously does stress about having these health issues and not being able to do all the things she used to do. We did asked him if these lesions were new or old lesions...He said there is no way to tell.
We left his office shocked and silent...so long...so many tests and no results. No idea of what is wrong with her.....As a Neurologist we thought he would have come up with something better than "many Mimics to MS symptoms" and "sure you are not depressed?" We thought he could have given us SOME direction, advice, more testing....something! These symptoms are serious....certainly not in her head....who WANTS to be incontinent in a store? There has to be some reason she is having these problems...if not MS then what? She has been tested for Lupus, Limes and other diseases...all clear.
We came home an did a little research and all of a sudden had a multitude of questions...
A few questions:
Is it really impossible to tell if lesions are new or old?
Are clear LP's definitive..."you don't have MS?"
Do the MRIs taken of the brain include the brain stem/base?
Should the Neurologist have done a MRI or her spine?
<sigh> TIA.....Tim (Canada)
The new issues are:
She tires very easily and will have a nap a couple of times a day...some days not so much. With a little activity, shopping or just walking in the mall for exercise, she gets very tired and has to go home and rest (I can see it in her face). On occasion she displays an inability to concentrate, and seems frustrated when I try to explain something I find interesting...this is not like her at all. She has had stabbing pains in one leg, double vision-an "aura" off to the left of her eye, balance issues (she has to walk with a shopping cart for balance - in the mall), heat intolerance, concentration, calculation, typing problems, her organizational skills have nose dived from very organized and precise to mid-low...confused...missing details she would normally take care of, memory loss, forgetting tasks she is doing mid stream, incontinence while shopping...
One day she and I went upstairs to the neighbors. They have two children 2 and 8. Like all children they were loud, vying for attention (I also was loud)...within a minute or two her face went white and she had a blank stare. We had to leave. I have noticed this same look when we are shopping at Walmart...white face, almost unresponsive...one word answer or not at all...for 5 or 10 mins or until she gets fresh air....
One day we were doing the dishes....she gestured to her left and asked me to pass her a "hash brown"....the only thing to her left was a roll of paper towels...I asked her if she was OK....she said yes...she looked fine...not tired at all. We joked about the hash browns....I was scared.
One day, sorting some clothes to take to charity, she complained she felt hot and like she had a large boil, about the size of a grape fruit, on her neck....she knew in reality that there was no boil but she said it felt so real.
She mentioned she has headaches almost every day (not migraines) but takes nothing for them....she does not want to be reliant on headache medication....this is typical for her. She also said her right hip and leg bother her almost every day...it feels like an electrical shock and a dull aching pain. She also mentioned her feet feel like she has a large square cotton pad on her toes and balls of both of her feet....this is a daily issue. I have to say she rarely if ever complains of these problems....I have usually have to initiate the conversation.
Some of these symptoms come and go.
Anyway...
GP ordered an MRI and set her up with a Neurologist. Neurologist sent her for vision and motor skills testing (I don't know what the tests are called)...also blood tests. We got together with him in his office to discuss the results of these tests....not sure about the other tests but the MRI came back with multiple lesions. He suggested these could be caused by MS and set her up for a LP. He gave us the distinct impression she may have MS and that the lesions were significant....therefore the LP. Before the LP he sent her for more testing.....electrical shocks to her legs and arms or something.....very painful she said. Here is where it gets strange....
On our visit to find out the results the Neurologist kind of did an about face...LP was clear....no word on the other tests (he is not very forthcoming? talkative?) He said she did not have MS. The lesions were now insignificant, probably caused by migraines or sleep apnea (she does have sleep apnea and had migraines years ago). He implied that maybe she was depressed...it's like he thought she was nuts....faking it! No other information was given to us....No idea of what my be causing these new issues...conversation kinda ended on the depression note, but she did say she did not feel depressed and just wanted to know what was wrong with her and why she was getting worse.
She is far from a hypochondriac and although she takes medication for mild depression she insists she is not depressed. I agree with her...she has been very happy and content....but obviously does stress about having these health issues and not being able to do all the things she used to do. We did asked him if these lesions were new or old lesions...He said there is no way to tell.
We left his office shocked and silent...so long...so many tests and no results. No idea of what is wrong with her.....As a Neurologist we thought he would have come up with something better than "many Mimics to MS symptoms" and "sure you are not depressed?" We thought he could have given us SOME direction, advice, more testing....something! These symptoms are serious....certainly not in her head....who WANTS to be incontinent in a store? There has to be some reason she is having these problems...if not MS then what? She has been tested for Lupus, Limes and other diseases...all clear.
We came home an did a little research and all of a sudden had a multitude of questions...
A few questions:
Is it really impossible to tell if lesions are new or old?
Are clear LP's definitive..."you don't have MS?"
Do the MRIs taken of the brain include the brain stem/base?
Should the Neurologist have done a MRI or her spine?
<sigh> TIA.....Tim (Canada)
I like hash browns better.
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