Hello, I have been having health problems for years. I was diagnosed with probable fibromyalgia in 2010 after struggling to get a doctor to even listen to me. I feel like I am slowly dying, losing little pieces of myself everyday. I saw a neurologist in 2016 and he told me he had no clue what was causing my symptoms. I have brain lesions but he said it could not be MS because I do not have spinal lesions. I am seeing a new neurologist at UVA in two weeks. I’m hoping to finally get someone to help me. My new primary told me she is 99% certain I have MS, that it fits my symptoms and history. I have not felt like myself in so long I don’t even remember what normal feels like.
I have a few questions. I would be extremely grateful for any help or feedback.
1. I feel like death sometimes but then I have days where I can function fairly well. Does that happen with MS?
2. If I am having tests during my good days will they still be able to tell if I have MS?
3. With RRMS do you feel normal between flare ups? I have better days but not normal days.
Symptoms:
* Extreme fatigue, no stamina
* Muscle stiffness and weakness in legs and arms especially on the right side
* Muscle spasms, cramps, and pain
* Trouble walking and standing
* Severe anxiety
* Constant need to pee even if I just went
* Rough, painfully dry skin
* Constipation
* Blurry vision and eye pain, mostly on the right side
* Double vision at times only in right eye
* Chronic dry eye
* Cold intolerance
* Low body temperature (sometimes drops to 96.3-97.3)
* Mix up my words constantly without realizing it
* Long pauses in the middle of sentences, usually because I forgot what I was saying or got confused
* Can't concentrate
* Can't remember anything and that is getting much worse
* Get confused often and easily
* Can’t learn/retain new information well
* Tingling and numbness in my hand and feet, worse on the right side
* Tremors (I call it having the shakes)
* Legs feel heavy, like I am trying to walk in deep water
* Sometimes hard to lift my foot, like it is too heavy
* Sometimes get a feeling in my right foot like something is stabbing me, appears suddenly and disappears suddenly
* Sometimes get lightheaded, my head feels funny
* Need naps daily, still feel exhausted like I didn't sleep at all
* Hand and feet often swell
* Near constant pain in my feet and ankles
* Near constant pain in my legs and hips, significantly worse on the right side
* Near constant pain in my entire back, especially in center around through to my ribs and my lower back
From previous MRI reports:
From 2007:
Two tiny foci of abnormal signal in the right cerebral hemisphere of uncertain clinical significance. Largest is 2 mm
From 2014:
There are a few foci of abnormal hyperintense signal in the periventricular white matter demonstrated on the T2-weighted and flair sequences. The most prominent lesions are located on the right side with the largest measuring 5 mm. These are nonspecific.
From 2016 with contrast:
Again visualized are a few foci of hyperintense signal abnormality on the T2-weighted and flair sequences. The largest lesion is again located in the right centrum semiovale and measures approximately 5 mm. This is unchanged. There are smaller foci noted in the bilateral paraventricular region. These appear stable. There is no abnormal enhancement. L4-L5: There is a focus of T2 hyperintensity along the posterior aspect compatible with an annular tear.
I’m just lost. At this point it would be a relief to get any diagnosis. I just want to know what is wrong with me so I can start fighting it. I have two grandsons under the age of two. I want to be able to enjoy them. Sorry for the long post, thank you for reading it. I would appreciate any feedback. Thank you.
I have a few questions. I would be extremely grateful for any help or feedback.
1. I feel like death sometimes but then I have days where I can function fairly well. Does that happen with MS?
2. If I am having tests during my good days will they still be able to tell if I have MS?
3. With RRMS do you feel normal between flare ups? I have better days but not normal days.
Symptoms:
* Extreme fatigue, no stamina
* Muscle stiffness and weakness in legs and arms especially on the right side
* Muscle spasms, cramps, and pain
* Trouble walking and standing
* Severe anxiety
* Constant need to pee even if I just went
* Rough, painfully dry skin
* Constipation
* Blurry vision and eye pain, mostly on the right side
* Double vision at times only in right eye
* Chronic dry eye
* Cold intolerance
* Low body temperature (sometimes drops to 96.3-97.3)
* Mix up my words constantly without realizing it
* Long pauses in the middle of sentences, usually because I forgot what I was saying or got confused
* Can't concentrate
* Can't remember anything and that is getting much worse
* Get confused often and easily
* Can’t learn/retain new information well
* Tingling and numbness in my hand and feet, worse on the right side
* Tremors (I call it having the shakes)
* Legs feel heavy, like I am trying to walk in deep water
* Sometimes hard to lift my foot, like it is too heavy
* Sometimes get a feeling in my right foot like something is stabbing me, appears suddenly and disappears suddenly
* Sometimes get lightheaded, my head feels funny
* Need naps daily, still feel exhausted like I didn't sleep at all
* Hand and feet often swell
* Near constant pain in my feet and ankles
* Near constant pain in my legs and hips, significantly worse on the right side
* Near constant pain in my entire back, especially in center around through to my ribs and my lower back
From previous MRI reports:
From 2007:
Two tiny foci of abnormal signal in the right cerebral hemisphere of uncertain clinical significance. Largest is 2 mm
From 2014:
There are a few foci of abnormal hyperintense signal in the periventricular white matter demonstrated on the T2-weighted and flair sequences. The most prominent lesions are located on the right side with the largest measuring 5 mm. These are nonspecific.
From 2016 with contrast:
Again visualized are a few foci of hyperintense signal abnormality on the T2-weighted and flair sequences. The largest lesion is again located in the right centrum semiovale and measures approximately 5 mm. This is unchanged. There are smaller foci noted in the bilateral paraventricular region. These appear stable. There is no abnormal enhancement. L4-L5: There is a focus of T2 hyperintensity along the posterior aspect compatible with an annular tear.
I’m just lost. At this point it would be a relief to get any diagnosis. I just want to know what is wrong with me so I can start fighting it. I have two grandsons under the age of two. I want to be able to enjoy them. Sorry for the long post, thank you for reading it. I would appreciate any feedback. Thank you.
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