Hello everyone. New and happy to be with you all....
I wanted to share my experience/symptoms and to see what others think of all this mess as I put it.
Last night I began to journal my symptoms and tried to go back as far as I could remember. So while I have some history to share, my brain is fried and I may have had symptoms to which I really do not recall.... I'm female (39). In or around 06 I began to have such neck pain. I went to see my primary and he ordered a CT scan. The scan showed 'Mild' lordosis. (I had 'Some' curve, but not the normal curve).. I also showed some degeneration. Doc said was normal..
Maybe a year later I started feeling some tenderness in my upper arms. I had strength, but they were go awful sore, as if I lifted weights. I remember seeing a muscularskeletal MD who did some reflex testing and such and basically said myofacial disorder... Anywho. It wasn't in any shape stopping me from my active life. The soreness kinda went away.
Fast forward. During the summer of 2013 (perhaps Aug) I noticed the soreness in my arms getting worse. I had a 2yr old and thought from ALL the lifting of her in and out of the car (or my neck getting worse). I also noticed NOW a pain in my sacral area. I would drive kinda on my side.. Sort of hurt when I got up or sat down or even coughed... Went on for about 3 months and I just remember feeling soooo run down... I got sick in late aug. with what I thought was the flu for a few days...
NOW In Nov (last week of) I got what felt like the flu again. This time my body felt like I was hit by a mack track. My legs (Mainly all upper, especially in my hamstrings) were soo sooo sore. In short. I got 'Over' the whatever it was I had, but sadly, those severe leg pains and arm pain AND foot pain (heels when I first got out of bed), never, ever went away.
I remember walking around the mall (had to christmas shop) for 5 hot min thinking..my legs are going to give out and I'm sooo, soo tired. I figured it was just me still getting over this sickness... I had to actually drive one of those carts around target, as the legs hurt too bad to walk...
After christmas, I said, "Screw This". I was just a runner my whole life and this is NOT letting up... Went to doc... explained... first words out this mouth was, "It sounds like you have Lyme disease".
Now anyone who knows LD, the testing is awful and the CDC criteria is disturbing!
My test came back positive. (I do not believe "CDC" positive). I took 3wks of Doxy and went back. No change. Doc did another and called me a week later with, "It was negative and I'm not sure you ever had it"... Really?
He wanted me to a rhumatologist. I in my head said, "Nope..I'm going straight to a neurologist"! I knew it was NOT my joints. I felt systemically ILL and my joints were fine. (Although I did go after the neuro and all was fine for RA..Lupus, etc) he tried saying the Fibro word and I walked out...
The neuro took a 3 hour exam. Sent me for blood work (He's a Lyme Neuro) and an MRI of my Brain (w & w/o contrast) and MRI of my cervical and lumbar spine... My blood work again showed positive from his lab for LD. My MRI of cervical showed reversed lordosis that was not present before, (so my neck is straight which can cause all kinds of issues with the arms), but what about these legs and panic attacks 24/7 from no where... My spine has herniation..buldging disks and some stenosis... so THAT could be causing the leg pain... (I give up).. SO I explained that we never did do a sacral, as that is where my pain is, so I'm off for one of those.
THE BRAIN did show white hyper-intensities that reads as follows..
Technique-Multipplanar following injections on a 1.5 tesla
Findings- No acute or chronic infarct, lacunar. No restricted diffusion. No atrophy/encephalomalacia
- There are 3-4 (seriously? You can't count? lol) punctate white matter hyperintensity seen in the posterior frontal centrum semiovale bilaterally, nonspecific findings.
-There are subtle periventricular lesion seen in the right temporo-occipital white matter adjacent to the atrium of the right laterla ventricle. These are best appreciated on FLAIR series 9 image, 28 and series 13 and 16.
(That last sentence got me as it doesn't read right IMO..is it lesion(s) or lesion.) Ughhh
Differential considerations premature small vessal disease, vasculities, migraians (don't have really) demyelination or gliosis of other etiology. Mild fluid in right mastoid, followed by left mastoidectomy. (I had ear surgery 8yrs ago)
My neuro put on the script to rule out MS... Why wouldn't the radiologist put that as a consideration?
So back at my neuro, I asked, "Do I have MS"? He just shook his head and said no... I asked my primary...he said no. I said than what's whith these spots and I am NOT getting well going on 7 MONTHS! :-( LD can present with lesions...So I think...well than do a spinal type? No?
MY CBS and ANA was all good, extept I'm severly below D. Good for vit.B
My symptoms persist... CHRONIC fatigue. (BTW. my EBV showed whole not an active disease, I tested 796 and it shouldn't be over <20.
I have chronic hip and leg pain. Standing longer than 5min makes me need to sit. Hurts to bend over..Lower back back. Tension headaches. Heavy arms and shoulders and notice my hands seem weird...or is that part in my head.. (well it is, no pun intended).
Neuro is wanting to put me on IV for the bacteria I tested for for LD and I'm going Monday for a second opinion. I mean geez..It could be a back/spinal issue, a brain issue or bacteria.. I feel like life has turned upside down after one bout of the flu or whatever.. I don't know what doctor to see NEXT or what testing I should suggest.
I so, so very lost and having a 3yr old has thrown me into the deepest depression.
So sorry for SUCH a lengthy bio, but I'm pulling straws and would be so grateful for suggestions, thoughts, ideas, anything
I wanted to share my experience/symptoms and to see what others think of all this mess as I put it.
Last night I began to journal my symptoms and tried to go back as far as I could remember. So while I have some history to share, my brain is fried and I may have had symptoms to which I really do not recall.... I'm female (39). In or around 06 I began to have such neck pain. I went to see my primary and he ordered a CT scan. The scan showed 'Mild' lordosis. (I had 'Some' curve, but not the normal curve).. I also showed some degeneration. Doc said was normal..
Maybe a year later I started feeling some tenderness in my upper arms. I had strength, but they were go awful sore, as if I lifted weights. I remember seeing a muscularskeletal MD who did some reflex testing and such and basically said myofacial disorder... Anywho. It wasn't in any shape stopping me from my active life. The soreness kinda went away.
Fast forward. During the summer of 2013 (perhaps Aug) I noticed the soreness in my arms getting worse. I had a 2yr old and thought from ALL the lifting of her in and out of the car (or my neck getting worse). I also noticed NOW a pain in my sacral area. I would drive kinda on my side.. Sort of hurt when I got up or sat down or even coughed... Went on for about 3 months and I just remember feeling soooo run down... I got sick in late aug. with what I thought was the flu for a few days...
NOW In Nov (last week of) I got what felt like the flu again. This time my body felt like I was hit by a mack track. My legs (Mainly all upper, especially in my hamstrings) were soo sooo sore. In short. I got 'Over' the whatever it was I had, but sadly, those severe leg pains and arm pain AND foot pain (heels when I first got out of bed), never, ever went away.
I remember walking around the mall (had to christmas shop) for 5 hot min thinking..my legs are going to give out and I'm sooo, soo tired. I figured it was just me still getting over this sickness... I had to actually drive one of those carts around target, as the legs hurt too bad to walk...
After christmas, I said, "Screw This". I was just a runner my whole life and this is NOT letting up... Went to doc... explained... first words out this mouth was, "It sounds like you have Lyme disease".
Now anyone who knows LD, the testing is awful and the CDC criteria is disturbing!
My test came back positive. (I do not believe "CDC" positive). I took 3wks of Doxy and went back. No change. Doc did another and called me a week later with, "It was negative and I'm not sure you ever had it"... Really?
He wanted me to a rhumatologist. I in my head said, "Nope..I'm going straight to a neurologist"! I knew it was NOT my joints. I felt systemically ILL and my joints were fine. (Although I did go after the neuro and all was fine for RA..Lupus, etc) he tried saying the Fibro word and I walked out...
The neuro took a 3 hour exam. Sent me for blood work (He's a Lyme Neuro) and an MRI of my Brain (w & w/o contrast) and MRI of my cervical and lumbar spine... My blood work again showed positive from his lab for LD. My MRI of cervical showed reversed lordosis that was not present before, (so my neck is straight which can cause all kinds of issues with the arms), but what about these legs and panic attacks 24/7 from no where... My spine has herniation..buldging disks and some stenosis... so THAT could be causing the leg pain... (I give up).. SO I explained that we never did do a sacral, as that is where my pain is, so I'm off for one of those.
THE BRAIN did show white hyper-intensities that reads as follows..
Technique-Multipplanar following injections on a 1.5 tesla
Findings- No acute or chronic infarct, lacunar. No restricted diffusion. No atrophy/encephalomalacia
- There are 3-4 (seriously? You can't count? lol) punctate white matter hyperintensity seen in the posterior frontal centrum semiovale bilaterally, nonspecific findings.
-There are subtle periventricular lesion seen in the right temporo-occipital white matter adjacent to the atrium of the right laterla ventricle. These are best appreciated on FLAIR series 9 image, 28 and series 13 and 16.
(That last sentence got me as it doesn't read right IMO..is it lesion(s) or lesion.) Ughhh
Differential considerations premature small vessal disease, vasculities, migraians (don't have really) demyelination or gliosis of other etiology. Mild fluid in right mastoid, followed by left mastoidectomy. (I had ear surgery 8yrs ago)
My neuro put on the script to rule out MS... Why wouldn't the radiologist put that as a consideration?
So back at my neuro, I asked, "Do I have MS"? He just shook his head and said no... I asked my primary...he said no. I said than what's whith these spots and I am NOT getting well going on 7 MONTHS! :-( LD can present with lesions...So I think...well than do a spinal type? No?
MY CBS and ANA was all good, extept I'm severly below D. Good for vit.B
My symptoms persist... CHRONIC fatigue. (BTW. my EBV showed whole not an active disease, I tested 796 and it shouldn't be over <20.
I have chronic hip and leg pain. Standing longer than 5min makes me need to sit. Hurts to bend over..Lower back back. Tension headaches. Heavy arms and shoulders and notice my hands seem weird...or is that part in my head.. (well it is, no pun intended).
Neuro is wanting to put me on IV for the bacteria I tested for for LD and I'm going Monday for a second opinion. I mean geez..It could be a back/spinal issue, a brain issue or bacteria.. I feel like life has turned upside down after one bout of the flu or whatever.. I don't know what doctor to see NEXT or what testing I should suggest.
I so, so very lost and having a 3yr old has thrown me into the deepest depression.
So sorry for SUCH a lengthy bio, but I'm pulling straws and would be so grateful for suggestions, thoughts, ideas, anything
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