Bounced around, doctor to doctor, new symptoms maybe MS?
Posted: Mon Dec 23, 2013 11:37 am
Hi all, and thank you for accepting my membership here.
I have been experiencing symptoms of "something" brewing since my late teen years. I am now under the care of a fantastic rheumatologist who believes I have a connective tissue disorder that can't be identified through labs yet.
Since teen years I have had many muscle pains, including severe abdominal cramping, and fatigue... lots and lots of fatigue... I also had exercise induced asthma issues and exercise intolerance. In my early 20s, IBS diagnosed, along with hypothyroidism and tilt-table positive orthostatic hypotension/neurally mediated hypotension that often caused syncope(passing out). Fatigue persisted so much that I had to take multiple long naps during the work day. I also had spasms in my wrists/hands for months after taking up writing as a profession... doctors thought it was carpal tunnel then wrote it off as fibromyalgia.
I have lived with the above issues, plus anemia (very low ferritin levels), adult-diagnosed ADD (inattentive), and miscellaneous aches and pains since, and last year mysteriously had a summer of pleurisy (right sided rib pain that kept me in tears). At that time I also got a positive antinuclear antibody test, which lead me to the rheumatologist for possible help. Results were inconclusive though and the rheumy dismissed me as having possibly drug-induced lupus and fibromyalgia.
This year, things seem to have spead up. It started with lots of one-sided migraine-like headaches, which included brief trigeminal neuralgia... after reading I think these may be cluster headaches as they do seem to come in clusters and they often cause vision loss in one eye, nose running and ear pain. I developed a bizarre reaction after an iv iron infusion in May - which caused bilateral hand and foot burning sensations, itching, with no rash... this has since evolved into joint pains in all finger joints primarily and wrist. I have also this year had a lot more numbing in hands and feet, usually depending on holding them in a particular position (such as elbows bent to hold a book, this will cause both hands to numb). I soonafter got phlebitis in left calf, which aches still, and have noticed right sided chest pain - this is brand new - and often feels like a dull ache below my rib bone, but can become extremely sharp and feel like a heart-attack I can only imagine feels. Two weeks ago I started noticing an ice-cold numb sensation right above the outside of my right knee -- and at that same time I experienced sharp nerve pain in the tops of my feet. I also have lots of muscle spasms/cramping that seems to persist way longer than it should... right shoulder/neck area is often attacked with this pain, but it also happens in my groin and back.
I have seen doctors... so many doctors... and they seem to want to treat a symptom and then send me packing. My rheumatologist wants to prescribe plaquenil to treat me, and I will talk to him at my next appointment about that, and will also query whether any of my problems may be due to a possible MS diagnosis.
I have two aunts on my mother's side who have MS, but I don't know all that much about the course of their illnesses. My mom only says they had "mild" versions, but there is likely more to it.
I am sure to be forgetting to share lots about my situation but would love any feedback and advice from you. I did have an EMG test on my hands recently which came back good (ie no nerve damage), although the neurologist suggested that my arthritis may be contributing to swelling which is causing pressure on the nerves.
Thank you for reading and hope you're all enjoying your holidays!
~Jessica
I have been experiencing symptoms of "something" brewing since my late teen years. I am now under the care of a fantastic rheumatologist who believes I have a connective tissue disorder that can't be identified through labs yet.
Since teen years I have had many muscle pains, including severe abdominal cramping, and fatigue... lots and lots of fatigue... I also had exercise induced asthma issues and exercise intolerance. In my early 20s, IBS diagnosed, along with hypothyroidism and tilt-table positive orthostatic hypotension/neurally mediated hypotension that often caused syncope(passing out). Fatigue persisted so much that I had to take multiple long naps during the work day. I also had spasms in my wrists/hands for months after taking up writing as a profession... doctors thought it was carpal tunnel then wrote it off as fibromyalgia.
I have lived with the above issues, plus anemia (very low ferritin levels), adult-diagnosed ADD (inattentive), and miscellaneous aches and pains since, and last year mysteriously had a summer of pleurisy (right sided rib pain that kept me in tears). At that time I also got a positive antinuclear antibody test, which lead me to the rheumatologist for possible help. Results were inconclusive though and the rheumy dismissed me as having possibly drug-induced lupus and fibromyalgia.
This year, things seem to have spead up. It started with lots of one-sided migraine-like headaches, which included brief trigeminal neuralgia... after reading I think these may be cluster headaches as they do seem to come in clusters and they often cause vision loss in one eye, nose running and ear pain. I developed a bizarre reaction after an iv iron infusion in May - which caused bilateral hand and foot burning sensations, itching, with no rash... this has since evolved into joint pains in all finger joints primarily and wrist. I have also this year had a lot more numbing in hands and feet, usually depending on holding them in a particular position (such as elbows bent to hold a book, this will cause both hands to numb). I soonafter got phlebitis in left calf, which aches still, and have noticed right sided chest pain - this is brand new - and often feels like a dull ache below my rib bone, but can become extremely sharp and feel like a heart-attack I can only imagine feels. Two weeks ago I started noticing an ice-cold numb sensation right above the outside of my right knee -- and at that same time I experienced sharp nerve pain in the tops of my feet. I also have lots of muscle spasms/cramping that seems to persist way longer than it should... right shoulder/neck area is often attacked with this pain, but it also happens in my groin and back.
I have seen doctors... so many doctors... and they seem to want to treat a symptom and then send me packing. My rheumatologist wants to prescribe plaquenil to treat me, and I will talk to him at my next appointment about that, and will also query whether any of my problems may be due to a possible MS diagnosis.
I have two aunts on my mother's side who have MS, but I don't know all that much about the course of their illnesses. My mom only says they had "mild" versions, but there is likely more to it.
I am sure to be forgetting to share lots about my situation but would love any feedback and advice from you. I did have an EMG test on my hands recently which came back good (ie no nerve damage), although the neurologist suggested that my arthritis may be contributing to swelling which is causing pressure on the nerves.
Thank you for reading and hope you're all enjoying your holidays!
~Jessica
