Should I be pursuing further investigation for MS? Help!
Posted: Mon May 20, 2013 7:11 pm
Hello,
First time here. Don't even know where to start, will try to be concise. And for the record, I'm a registered nurse so have a good understanding of MS. I am a 45 yr old female. No pregnancies/no children.
Went off work Sept 2011 when diagnosed for the first time w/ Major Depression and Anxiety. Family Doc and Psychiatrist (had requested to see the latter as I was felt Psychiatrist was better trained to determine best meds for me) tried me on several different antidepressant meds (Cipralex, Cymbalta, Zoloft) until found one (Zoloft) I could tolerate. Did therapy/counseling as well.
History of health conditions in addition to above: Interstitial Cystitis, Autoimmune Thyroiditis (hypothyroid), Exertional Asthma
In Jan 2012, it seemed suddenly that I began experiencing stress urinary incontinence (when sneezing, laughing, coughing - moreso first thing in morning when wake up with full bladder). Attributed this to my age, I guess.
From about early 2012, started noticing feet/ankles very very "stiff" and somewhat tender at ankles (no swelling) when first getting up in morning, would kinda walk like a duck until up and around and they'd loosen up.
In spring/early summer of 2012 began experiencing profound pins/needles/tingling/decreased sensation feeling to both hands upon waking up. Not related to circulation as moving hands and fingers around (to get blood flowing) did not help, seemed to me more like a nerve thing. Over time this progressed, to where I'd wake up in the night due to this strange tingling feeling to both hands....and then in mornings it could take 1.5 hours for the feeling to go away.
Last spring, started waking up urgently in the middle of the night with the most intense, excrutiating BURNING to the SIDE of my outer LEFT thigh, from about mid thigh to just above side of the knee. It felt like someone had poured boiling water on me. I would jump out of bed screaming, literally, assuming I could 'walk it off' the same way you can when you get a cramp in leg or foot while sleeping but no dice......walking did nothing. The burning would last 15 - 30 seconds, then stop.....then to the area of the burning that spot on my skin would feel strange.....sorta numb, less sensation. Did some reading, only thing I could come up with was Meralgia Paresthetica (lateral cutaneous nerve compression). Family Doc agreed this was likely it (as by that point I'd gained 40 lbs since going off work and obesity can cause that). Getting increasing pain to feet/ankles, right knee......long story short Family Doc suspected I had Fibromyalgia.
As the numbness/tingling to hands, and the horrid burning pain to thigh were concerning me along with increased stiffness to my ankles......I requested CT Scan of Head, and referral for EMG. I was concerned about having MS. CT Scan showed Negative for MS/Lesions (Done Oct 2012, I read report), EMG apparently showed only that I have Carpal Tunnel to both hands and that's all.
Doc started me on Gabapentin which was nasty stuff for me, so she switched me to Lyrica.
This past February, feet getting so bad, walking like a duck....ankles tender and stiff (no swelling). Have high arches, arch area extremely tender, if I'd been on my feet for more than 20 minutes I was just about in tears due to the pain. Bought expensive home foot massager, was too powerful to even use as underside of feet so tender. I went to see a Podiatrist who was rather useless, just wanted to sell me $550 orthotics. Said I had 'symptoms of Plantar Fasciitis" but didn't actually have it. Said I have very high arches, feet stiff, I walk on the outside of my feet, needed orthotics to provide better support. I ended up initiating Physiotherapy as I was desperate for some help/relief. Was going weekly for about 7 weeks. She confirmed I had very limited range of motion to feet and ankles, very tight and painful Achilles tendon, tight/tender hamstrings and iliotibial bands. She taught me stretches. She said she could feel "knots" in my Iliotibial bands (bands that run up the sides of the thigh). When she'd work on these areas I'd experience intense "itching" to the tender spots. She said that itching can also be a manifestation of pain (I'd never heard this before). At home I'd been having itching to the sides of my thighs, intermittently, for a long time. Drives me nuts. The area that's itchy is very tender and you scratch and scratch and scratch, it hurts to scratch because of the tenderness and the scratching only barely relieves the itch, for about 5 seconds. There is no skin rash. It's deep in my thighs. It's horrible. Seems to be worse when (TMI) sitting on the toilet for some reason.
I wear proper shoes w/ orthotics around the house, I got some night socks for people w/ Plantar Fasciitis (to keep toes/forefront of foot more flexed forward when sleeping), no help.
As first podiatrist a useless tool, family doc referred me to one in the city, saw him last week. Asked me who diagnosed me w/ Fibro, was it a Rheumatologist, told him no...my family doc. He told me that people w/ Fibro often have foot problems but due to my other symptoms he felt something else could be going on so he sent me for bloodwork (Rheumatoid Factor, which was negative a year ago but could still be positive....ANA and HLA-B27). Said once results back he would refer me to a Rheumatologist.
ALSO.....starting this past summer, have been dealing with unpredictable explosive diarrhea. Not usual for me at all. Basic testing done that ruled out Celiac, infection/parasites, etc). Family doc attributes it to "IBS" (irritable bowel syndrome).
And if that's not enough, starting around Oct/Nov 2012, began experiencing some bowel incontinence. It's like the diarrhea is so explosive and I seem to get no real notice, then have about 5-10 seconds to get to the toilet....but also it's like I just don't seem to have the "control" to hold it until I'm pants down and on the toilet. It's absolutely crazy, and humiliating! So to me, 2 separate issues....there's the diarrhea but there's also ?poor sphincter control.
Have been waiting since Jul 2012 to see a GI Specialist (that's when diarrhea started, and I was concerned by this sudden change in my bowels so I really just wanted a Colonscopy but here you have to see a specialist and HE decides what tests to send you for).............FINALLY have appt w/ GI guy on May 27, thank God.
I also have profound fatique. Recently had bloodwork to see if my iron is low or anemic, both fine. There are times each day that I simply MUST sleep, even if there are things I really want/have to do. If I'm out at an appointment, then maybe stop to get some groceries, I come home and I am exhausted and have to sleep a couple of hours.
I really do NOT want to undergo another CT Scan again (craploads of radiation, have had 2 now, once for Gallbladder) if I can help it. Just wondering if at the time of my CT Scan Oct 2012, if it's possible for there to be no evidence of lesions but a person still has MS? Would an MRI be helpful?
These symptoms: foot/ankle pain/stiffness (sometimes my body moves faster than my stiff feet and I've fallen!), burning to thigh, tingling/numbness to hands, fatigue, sudden stress urinary incontinence, sudden bowel incontinence..........they all seem to me like they could be MS. I'm certainly not looking to be diagnosed with MS but if I have it I'd like to know.
Does any of the above sound familiar to any of you who've been diagnosed w/ MS?
If I request further investigation for MS, I'm sure I'll be met with "Well your CT Scan of Head was negative" so what should my response to that be, that it's sometimes falsely negative?
Many thanks
Lisa in Canada
First time here. Don't even know where to start, will try to be concise. And for the record, I'm a registered nurse so have a good understanding of MS. I am a 45 yr old female. No pregnancies/no children.
Went off work Sept 2011 when diagnosed for the first time w/ Major Depression and Anxiety. Family Doc and Psychiatrist (had requested to see the latter as I was felt Psychiatrist was better trained to determine best meds for me) tried me on several different antidepressant meds (Cipralex, Cymbalta, Zoloft) until found one (Zoloft) I could tolerate. Did therapy/counseling as well.
History of health conditions in addition to above: Interstitial Cystitis, Autoimmune Thyroiditis (hypothyroid), Exertional Asthma
In Jan 2012, it seemed suddenly that I began experiencing stress urinary incontinence (when sneezing, laughing, coughing - moreso first thing in morning when wake up with full bladder). Attributed this to my age, I guess.
From about early 2012, started noticing feet/ankles very very "stiff" and somewhat tender at ankles (no swelling) when first getting up in morning, would kinda walk like a duck until up and around and they'd loosen up.
In spring/early summer of 2012 began experiencing profound pins/needles/tingling/decreased sensation feeling to both hands upon waking up. Not related to circulation as moving hands and fingers around (to get blood flowing) did not help, seemed to me more like a nerve thing. Over time this progressed, to where I'd wake up in the night due to this strange tingling feeling to both hands....and then in mornings it could take 1.5 hours for the feeling to go away.
Last spring, started waking up urgently in the middle of the night with the most intense, excrutiating BURNING to the SIDE of my outer LEFT thigh, from about mid thigh to just above side of the knee. It felt like someone had poured boiling water on me. I would jump out of bed screaming, literally, assuming I could 'walk it off' the same way you can when you get a cramp in leg or foot while sleeping but no dice......walking did nothing. The burning would last 15 - 30 seconds, then stop.....then to the area of the burning that spot on my skin would feel strange.....sorta numb, less sensation. Did some reading, only thing I could come up with was Meralgia Paresthetica (lateral cutaneous nerve compression). Family Doc agreed this was likely it (as by that point I'd gained 40 lbs since going off work and obesity can cause that). Getting increasing pain to feet/ankles, right knee......long story short Family Doc suspected I had Fibromyalgia.
As the numbness/tingling to hands, and the horrid burning pain to thigh were concerning me along with increased stiffness to my ankles......I requested CT Scan of Head, and referral for EMG. I was concerned about having MS. CT Scan showed Negative for MS/Lesions (Done Oct 2012, I read report), EMG apparently showed only that I have Carpal Tunnel to both hands and that's all.
Doc started me on Gabapentin which was nasty stuff for me, so she switched me to Lyrica.
This past February, feet getting so bad, walking like a duck....ankles tender and stiff (no swelling). Have high arches, arch area extremely tender, if I'd been on my feet for more than 20 minutes I was just about in tears due to the pain. Bought expensive home foot massager, was too powerful to even use as underside of feet so tender. I went to see a Podiatrist who was rather useless, just wanted to sell me $550 orthotics. Said I had 'symptoms of Plantar Fasciitis" but didn't actually have it. Said I have very high arches, feet stiff, I walk on the outside of my feet, needed orthotics to provide better support. I ended up initiating Physiotherapy as I was desperate for some help/relief. Was going weekly for about 7 weeks. She confirmed I had very limited range of motion to feet and ankles, very tight and painful Achilles tendon, tight/tender hamstrings and iliotibial bands. She taught me stretches. She said she could feel "knots" in my Iliotibial bands (bands that run up the sides of the thigh). When she'd work on these areas I'd experience intense "itching" to the tender spots. She said that itching can also be a manifestation of pain (I'd never heard this before). At home I'd been having itching to the sides of my thighs, intermittently, for a long time. Drives me nuts. The area that's itchy is very tender and you scratch and scratch and scratch, it hurts to scratch because of the tenderness and the scratching only barely relieves the itch, for about 5 seconds. There is no skin rash. It's deep in my thighs. It's horrible. Seems to be worse when (TMI) sitting on the toilet for some reason.
I wear proper shoes w/ orthotics around the house, I got some night socks for people w/ Plantar Fasciitis (to keep toes/forefront of foot more flexed forward when sleeping), no help.
As first podiatrist a useless tool, family doc referred me to one in the city, saw him last week. Asked me who diagnosed me w/ Fibro, was it a Rheumatologist, told him no...my family doc. He told me that people w/ Fibro often have foot problems but due to my other symptoms he felt something else could be going on so he sent me for bloodwork (Rheumatoid Factor, which was negative a year ago but could still be positive....ANA and HLA-B27). Said once results back he would refer me to a Rheumatologist.
ALSO.....starting this past summer, have been dealing with unpredictable explosive diarrhea. Not usual for me at all. Basic testing done that ruled out Celiac, infection/parasites, etc). Family doc attributes it to "IBS" (irritable bowel syndrome).
And if that's not enough, starting around Oct/Nov 2012, began experiencing some bowel incontinence. It's like the diarrhea is so explosive and I seem to get no real notice, then have about 5-10 seconds to get to the toilet....but also it's like I just don't seem to have the "control" to hold it until I'm pants down and on the toilet. It's absolutely crazy, and humiliating! So to me, 2 separate issues....there's the diarrhea but there's also ?poor sphincter control.
Have been waiting since Jul 2012 to see a GI Specialist (that's when diarrhea started, and I was concerned by this sudden change in my bowels so I really just wanted a Colonscopy but here you have to see a specialist and HE decides what tests to send you for).............FINALLY have appt w/ GI guy on May 27, thank God.
I also have profound fatique. Recently had bloodwork to see if my iron is low or anemic, both fine. There are times each day that I simply MUST sleep, even if there are things I really want/have to do. If I'm out at an appointment, then maybe stop to get some groceries, I come home and I am exhausted and have to sleep a couple of hours.
I really do NOT want to undergo another CT Scan again (craploads of radiation, have had 2 now, once for Gallbladder) if I can help it. Just wondering if at the time of my CT Scan Oct 2012, if it's possible for there to be no evidence of lesions but a person still has MS? Would an MRI be helpful?
These symptoms: foot/ankle pain/stiffness (sometimes my body moves faster than my stiff feet and I've fallen!), burning to thigh, tingling/numbness to hands, fatigue, sudden stress urinary incontinence, sudden bowel incontinence..........they all seem to me like they could be MS. I'm certainly not looking to be diagnosed with MS but if I have it I'd like to know.
Does any of the above sound familiar to any of you who've been diagnosed w/ MS?
If I request further investigation for MS, I'm sure I'll be met with "Well your CT Scan of Head was negative" so what should my response to that be, that it's sometimes falsely negative?
Many thanks
Lisa in Canada