mnewhall
07-09-2007, 09:26 AM
i was hoping some of you might be able to help me. i am undx'd at this time, but neuro is 95% sure it's MS. i have had hip pain in the past for months at a time that would go away on it's own and xrays and mri's showed no reason for it. My hips are loose (always have been) and they click alot. sometimes when i turn to walk, my feet don't always turn at the same time my upper body does and i'll feel a little twinge of pain.
well last thursday i was in walmart and when i was walking back to my car i noticed a tightness around my upper-upper thigh & hip area and then a pain when walking when that leg would be at the back. It has not subsided and what makes it really hurt is sitting on the toilet, bringing that knee up to my chest makes that hip feel like it's going to snap in two in the front, or bending over to tie my shoes or bending forward from a standing position, and it also hurts to stand with my weight on that leg (like when you hold a child on your hip).
i have sciatica that comes and goes, but this is not sciatica pain. i have bursitis on the side of that hip that comes and goes, but this is not a bursitis pain. It is definitely in the center and radiates a little over to groin area and the middle of my thigh in the back. It feels like it's swollen in there and full of fluid.
i'm in the middle of a followup for re-curring ankle pain from ankle surgery 2 years ago and now i probably have to go about this. not sure if i should see my neuro or go to another orthopedist because i believe the one i'm seeing for my ankle only specializes in the feet.
just was hoping for a little insight from some of you suffering with maybe the same thing.
thank you,
michelle
well last thursday i was in walmart and when i was walking back to my car i noticed a tightness around my upper-upper thigh & hip area and then a pain when walking when that leg would be at the back. It has not subsided and what makes it really hurt is sitting on the toilet, bringing that knee up to my chest makes that hip feel like it's going to snap in two in the front, or bending over to tie my shoes or bending forward from a standing position, and it also hurts to stand with my weight on that leg (like when you hold a child on your hip).
i have sciatica that comes and goes, but this is not sciatica pain. i have bursitis on the side of that hip that comes and goes, but this is not a bursitis pain. It is definitely in the center and radiates a little over to groin area and the middle of my thigh in the back. It feels like it's swollen in there and full of fluid.
i'm in the middle of a followup for re-curring ankle pain from ankle surgery 2 years ago and now i probably have to go about this. not sure if i should see my neuro or go to another orthopedist because i believe the one i'm seeing for my ankle only specializes in the feet.
just was hoping for a little insight from some of you suffering with maybe the same thing.
thank you,
michelle
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MSNik
07-09-2007, 11:04 AM
Michelle.
Ive never heard of anything even remotely close to what you are describing as MS symptoms. Please dont get upset with me, but you are describing joint pain, or even arthritis type pain...not MS symptoms. Even the MS hug, which you sort- of described, lasts minutes, not hours and not days.....
I do hope you find out what is going on with you, sounds horribly painful.
good luck.
N
Ive never heard of anything even remotely close to what you are describing as MS symptoms. Please dont get upset with me, but you are describing joint pain, or even arthritis type pain...not MS symptoms. Even the MS hug, which you sort- of described, lasts minutes, not hours and not days.....
I do hope you find out what is going on with you, sounds horribly painful.
good luck.
N
mnewhall
07-09-2007, 11:17 AM
Thanks Nikki,
I wasn't sure if what I am feeling in my hip/upper-upper thigh area was a muscle spasm as I do get painful cramps in both my hips. i was thinking this was a little more intense. It is very tight around that area. i am actually praying it just goes away because i don't need anything else on top of all i'm dealing with now.
my MS sx's are blurred vision that comes and goes, numbness and tingling in extremities that comes and goes, muscle twitches non-stop in my my calves and feet and have frequent twitches as well in my bladder, colon, arms and face, vertigo that comes and goes, and frequent migraines.
thank you for your input and hope you have a great day!
blessings,
michelle
I wasn't sure if what I am feeling in my hip/upper-upper thigh area was a muscle spasm as I do get painful cramps in both my hips. i was thinking this was a little more intense. It is very tight around that area. i am actually praying it just goes away because i don't need anything else on top of all i'm dealing with now.
my MS sx's are blurred vision that comes and goes, numbness and tingling in extremities that comes and goes, muscle twitches non-stop in my my calves and feet and have frequent twitches as well in my bladder, colon, arms and face, vertigo that comes and goes, and frequent migraines.
thank you for your input and hope you have a great day!
blessings,
michelle
jprinz99
07-09-2007, 12:30 PM
Weak hip flexors can cause this (I am going thru the same thing: ankle surgeries, hip pain esp when flexing/bending hip etc). Mine actually dislocates. My OS said MS can cause weak hip flexors and this is the result. I am working on it in PT. I may need surgery as my ball part of the joint is now torn up and acetabulum is also getting chewed up because I waited too long to get it addressed.
My OS said Yes it can be side effect of MS as in the weakness which can hit the hip region if you are having leg issues.
My OS said Yes it can be side effect of MS as in the weakness which can hit the hip region if you are having leg issues.
jprinz99
07-09-2007, 12:31 PM
forget to add-
of course it could also be a non MS thing and just a problem with back of hip. Go to an OS and get it investigated and take your films with you.
of course it could also be a non MS thing and just a problem with back of hip. Go to an OS and get it investigated and take your films with you.
MSNik
07-09-2007, 12:38 PM
Michelle,
Now THOSE symptoms sound like MS symptoms! I can now understand why you are leaning towards MS in general...
The way you described your hip pain, didnt sound like muscle twitches, but now with this additional information, it certainly could be. Are you taking any sort of muscle relaxers? Do they help at all?
I really hope you figure out what is going on, and know that we are here, if we can help!
Hugs,
Nikki
Now THOSE symptoms sound like MS symptoms! I can now understand why you are leaning towards MS in general...
The way you described your hip pain, didnt sound like muscle twitches, but now with this additional information, it certainly could be. Are you taking any sort of muscle relaxers? Do they help at all?
I really hope you figure out what is going on, and know that we are here, if we can help!
Hugs,
Nikki
mnewhall
07-09-2007, 01:06 PM
Hi Neighbor Jane :wave:
Thank you for the input also. I was just so confused on whether i should see my OS, neuro, or rheumie! Go figure. I know past films have shown nothing in the way of arthritis or any deformity - but this was a sudden onset of bad pain, but not a first in the way of some form of hip pain. Thanks again and hope you are staying cool! Too hot here in VA, eh?
Nikki -
Sorry, i should've been more clear in those sx's (there are others too). I actually am on Flexeril, but it doesn't stop the cramping or even the muscle twitches, but with it I'm able to fall asleep, but staying asleep is a whole nother story! HAHA ;) . I'm in the "lets wait and see stage" since all MRIs and LP and bloodwork were clear, but sx's point to MS and he wanted to rule other things out first. Thanks again for your reply. I'm so glad to have found this board - it's been very helpful and encouraging.
Blessings,
Michelle
Thank you for the input also. I was just so confused on whether i should see my OS, neuro, or rheumie! Go figure. I know past films have shown nothing in the way of arthritis or any deformity - but this was a sudden onset of bad pain, but not a first in the way of some form of hip pain. Thanks again and hope you are staying cool! Too hot here in VA, eh?
Nikki -
Sorry, i should've been more clear in those sx's (there are others too). I actually am on Flexeril, but it doesn't stop the cramping or even the muscle twitches, but with it I'm able to fall asleep, but staying asleep is a whole nother story! HAHA ;) . I'm in the "lets wait and see stage" since all MRIs and LP and bloodwork were clear, but sx's point to MS and he wanted to rule other things out first. Thanks again for your reply. I'm so glad to have found this board - it's been very helpful and encouraging.
Blessings,
Michelle
KTMorra
07-09-2007, 02:26 PM
HI Michelle and Welcome home :wave:
I can relate to the pain your describing. It hit me when the temperature started rising around here. I have had 2 fusions in my lumbar spine and one in my C-spine, and at first I thought the L-spine had gone bad again. It has to some degree but the pain is presenting at a different level than where my problem is. My ortho agrees with Jane in that MS does tend to affect the muscles and tendons making them weak and along with the muscle spasms it can be very painful. When I was on my last round of steroids the pain did subside quite a bit, of course it came back. I will do just about anything not to take them again so for the mean time I am dealing with it. I take Valium for the spasms and Kadian for pain control.
Hope your feeling better soon, and glad to see you back on line
Kt
I can relate to the pain your describing. It hit me when the temperature started rising around here. I have had 2 fusions in my lumbar spine and one in my C-spine, and at first I thought the L-spine had gone bad again. It has to some degree but the pain is presenting at a different level than where my problem is. My ortho agrees with Jane in that MS does tend to affect the muscles and tendons making them weak and along with the muscle spasms it can be very painful. When I was on my last round of steroids the pain did subside quite a bit, of course it came back. I will do just about anything not to take them again so for the mean time I am dealing with it. I take Valium for the spasms and Kadian for pain control.
Hope your feeling better soon, and glad to see you back on line
Kt
mnewhall
07-09-2007, 03:17 PM
Hi KT :wave:
Wow! Thanks for the Welcome Home Party ! :D HAHA!
I had a great time but the flights were a nightmare with delays and long layovers. GLAD to be home. I walked my self to death in London only 1 day. We had one teen come down with the stomach flu from the plane ride and she was out of it for 2 days -- she had to be taken to the ER there, but she's fine. i was glad on the 2nd day, because I had to stay back with her instead of walking around London again! I wanted to go again and see the rest of the sights and knew my ankle would give me problems as it did the first day in London; but was happy to stay with her :D
you know, i walked around the airports, up stairs and escalators (that quit working!), we went to a castle and I walked myself ragged there, we painted a home, walked through a neighborhood passing out flyers/tracts. No wonder my dang hip hurts! LOL! :jester: But you know, it did not bother me when I was there. I was putting more weight on that right leg because of my bum left ankle and maybe those few steps in "Wally World" just did me in.
I just made an appt with my OS for this Thursday to see about my hip. I just wasn't sure if I should see the neuro about it or not because it felt "tight" like a spasm. I guess the OS is the best place to start. I am already seeing him about my ankle hurting again since the surgery and after giving me a steroid pack -- that didn't help, he's trying me out on Lidoderm patches around the ankle in combo with Arthrotec (NSAID). He said he might need to go in again to look by arthroscopy. He's saying now it's bursitis in the ankle and the most mild arthritis that shouldn't cause this much pain.
we will see ;)
Thanks again for the welcome home wishes :wave: Hope you are feeling well and stayin' cool! :cool:
blessings my friend,
michelle
Wow! Thanks for the Welcome Home Party ! :D HAHA!
I had a great time but the flights were a nightmare with delays and long layovers. GLAD to be home. I walked my self to death in London only 1 day. We had one teen come down with the stomach flu from the plane ride and she was out of it for 2 days -- she had to be taken to the ER there, but she's fine. i was glad on the 2nd day, because I had to stay back with her instead of walking around London again! I wanted to go again and see the rest of the sights and knew my ankle would give me problems as it did the first day in London; but was happy to stay with her :D
you know, i walked around the airports, up stairs and escalators (that quit working!), we went to a castle and I walked myself ragged there, we painted a home, walked through a neighborhood passing out flyers/tracts. No wonder my dang hip hurts! LOL! :jester: But you know, it did not bother me when I was there. I was putting more weight on that right leg because of my bum left ankle and maybe those few steps in "Wally World" just did me in.
I just made an appt with my OS for this Thursday to see about my hip. I just wasn't sure if I should see the neuro about it or not because it felt "tight" like a spasm. I guess the OS is the best place to start. I am already seeing him about my ankle hurting again since the surgery and after giving me a steroid pack -- that didn't help, he's trying me out on Lidoderm patches around the ankle in combo with Arthrotec (NSAID). He said he might need to go in again to look by arthroscopy. He's saying now it's bursitis in the ankle and the most mild arthritis that shouldn't cause this much pain.
we will see ;)
Thanks again for the welcome home wishes :wave: Hope you are feeling well and stayin' cool! :cool:
blessings my friend,
michelle
jprinz99
07-09-2007, 11:00 PM
Michelle (and KT) -
Maybe it's the heat but are we sure we aren't just missing each other passing in/out of the doctor's offices? ha ha ha. Michelle, let us know what the OS says. Gald you are back home.
Just curious - what did you do to your ankle? Regardless, I am sure I don't have to tell you but ake sure yur docs all talk to each other.
jane:wave:
help, I'm melting....
Maybe it's the heat but are we sure we aren't just missing each other passing in/out of the doctor's offices? ha ha ha. Michelle, let us know what the OS says. Gald you are back home.
Just curious - what did you do to your ankle? Regardless, I am sure I don't have to tell you but ake sure yur docs all talk to each other.
jane:wave:
help, I'm melting....
mnewhall
07-10-2007, 09:19 AM
Hi Jane :wave:
I was dx'd with tendonitis in my left ankle at age 7. it was SO painful whenever I would rollerskate or play outside i couldn't walk the next day. it got better as i got older and didn't play or rollerskate as much, but too much mall walking ;) and it would set it off.
in 1993 i fell off the last step on my porch - it was like my heel was right on the edge of the step and i had been driving for like 8 hrs and i guess it was weak. well, i sprained the living daylights out of it. the urgent care i went to didn't tell me to follow up with an OS and i just worked through it, but 13 years later (2006) it had been giving me problems, always twisting it, it was loose and i would stumble and it was painful just sitting. I also was walking on the outside of my foot which has caused a bunion on that big toe from not properly walking (i don't wear heels or pointy toe shoes). OS did MRI and it still had a tear and the ligaments were stretched and he set me up with PT and it didn't improve and in Nov 2006 i had ankle ligament repair surgery to tighten and repair. surgery has been pretty successful until recently.
i cannot spend more than an hour on it at a time with out it killing me. we had a car wash fundraiser the week before we left for England and i was on it for 4 hours washing cars and stooping and bending and couldn't walk for the next 2 days without tremendous pain and could hardly move it from side to side. OS gave me a steroid pack for a week and said he believes its bursitis and maybe scar tissue around the incision where he did the work. well it didn't help and walking in London, painting a home there, walking through JFK and everything else, it was just as bad.
The Lidoderm patches (12 hrs on/12 hrs off) and the Arthrotec (2x day) seem to have helped a bit. Now my hip is getting messed up :(
So, i just have had trouble with it since i was a kid. I will definitely make sure all those docs are talking with each other.
I bet we have passed each other in the docs offices and didn't even know it :D
Well, take care and keep cool. Wishing you well.
blessings,
michelle
I was dx'd with tendonitis in my left ankle at age 7. it was SO painful whenever I would rollerskate or play outside i couldn't walk the next day. it got better as i got older and didn't play or rollerskate as much, but too much mall walking ;) and it would set it off.
in 1993 i fell off the last step on my porch - it was like my heel was right on the edge of the step and i had been driving for like 8 hrs and i guess it was weak. well, i sprained the living daylights out of it. the urgent care i went to didn't tell me to follow up with an OS and i just worked through it, but 13 years later (2006) it had been giving me problems, always twisting it, it was loose and i would stumble and it was painful just sitting. I also was walking on the outside of my foot which has caused a bunion on that big toe from not properly walking (i don't wear heels or pointy toe shoes). OS did MRI and it still had a tear and the ligaments were stretched and he set me up with PT and it didn't improve and in Nov 2006 i had ankle ligament repair surgery to tighten and repair. surgery has been pretty successful until recently.
i cannot spend more than an hour on it at a time with out it killing me. we had a car wash fundraiser the week before we left for England and i was on it for 4 hours washing cars and stooping and bending and couldn't walk for the next 2 days without tremendous pain and could hardly move it from side to side. OS gave me a steroid pack for a week and said he believes its bursitis and maybe scar tissue around the incision where he did the work. well it didn't help and walking in London, painting a home there, walking through JFK and everything else, it was just as bad.
The Lidoderm patches (12 hrs on/12 hrs off) and the Arthrotec (2x day) seem to have helped a bit. Now my hip is getting messed up :(
So, i just have had trouble with it since i was a kid. I will definitely make sure all those docs are talking with each other.
I bet we have passed each other in the docs offices and didn't even know it :D
Well, take care and keep cool. Wishing you well.
blessings,
michelle
KTMorra
07-10-2007, 09:36 AM
Ok this is getting wierd Ladies (Jane & Michelle)
I swear we must have been separated at birth or something. LOL
I see the Ortho docs at sports medicine orthopaedics near CGH, Romash, Goss, Brown etal.. And Dr Byrd at atlantic ortho by Leigh did my L-spine fusion.
Romash did my ankle and tendon repair a few years ago because of a long ignored tendon tear from me being clutzy and spraining it walking down stairs and rolling my ankle on a pinecone. I see Dr Winke in Sports Medicine Ortho also for pain management. (she is awesome)
I bet we have passed eachother at one time or another either at the Drs office or at Wally world, the new one off Cedar Rd is only 2 miles from my house, My hubby calls it our 2nd home LOL:jester:
This heat has got to end sometime soon or we will all melt. Thank god for AC!
Take care and stay cool
your neighbor and friend:wave:
KT
I swear we must have been separated at birth or something. LOL
I see the Ortho docs at sports medicine orthopaedics near CGH, Romash, Goss, Brown etal.. And Dr Byrd at atlantic ortho by Leigh did my L-spine fusion.
Romash did my ankle and tendon repair a few years ago because of a long ignored tendon tear from me being clutzy and spraining it walking down stairs and rolling my ankle on a pinecone. I see Dr Winke in Sports Medicine Ortho also for pain management. (she is awesome)
I bet we have passed eachother at one time or another either at the Drs office or at Wally world, the new one off Cedar Rd is only 2 miles from my house, My hubby calls it our 2nd home LOL:jester:
This heat has got to end sometime soon or we will all melt. Thank god for AC!
Take care and stay cool
your neighbor and friend:wave:
KT
mnewhall
07-10-2007, 09:58 AM
Hi KT,
I'm on the other side of Chesapeake (Western Branch), but some appts I've had near CGH. Most of mine are close to home.
Boy, we do sound like we were separated at birth! :D I'm very clumsy and throw in some Vertigo and lightheadedness, spin it all around and there ya have it! LOL:dizzy:
We live at Wally World too. It's a love-hate relationship with Walmart!
I'm trying to stay cool. I'm so thankful that my A/C's are operating good, esp my car. Driving to and from Yorktown to Chesapeake everyday would be a long hot ride without it.
Blessings my friend :wave:
michelle
I'm on the other side of Chesapeake (Western Branch), but some appts I've had near CGH. Most of mine are close to home.
Boy, we do sound like we were separated at birth! :D I'm very clumsy and throw in some Vertigo and lightheadedness, spin it all around and there ya have it! LOL:dizzy:
We live at Wally World too. It's a love-hate relationship with Walmart!
I'm trying to stay cool. I'm so thankful that my A/C's are operating good, esp my car. Driving to and from Yorktown to Chesapeake everyday would be a long hot ride without it.
Blessings my friend :wave:
michelle
Hope4All
07-10-2007, 10:43 AM
Right now I'm diagnosed with Fibromyalgia, I also have hip pain.....mostly in my right hip but also in my left. My hips are fine on X-ray, I do have oesteoarthritis in my lower spine. Sometimes my hips hurt so bad when I go to lift them up to get in the truck I want to cry out!!!!!!!
Im told mine is from Fibro...I never thought that could be from MS too.....I thought MS was more Neurological ... but I don't know much lol
Wow I sound like my Doctor ( I don't know much ) lol
Hope
Im told mine is from Fibro...I never thought that could be from MS too.....I thought MS was more Neurological ... but I don't know much lol
Wow I sound like my Doctor ( I don't know much ) lol
Hope
mnewhall
07-10-2007, 11:32 AM
Hi Hope :wave:
I am currently undx'd for MS, but am dx'd as:
Fibromyalgia
Raynaud's
Sjogren's
Insterstitial Cystitis (IC)
Hypothyroid
UCTD (Unspecified Connective Tissue Disease)
tendonitis
TMJ
Migraines
Heart palpitations
My neuro told me that he personally does not like the dx of Fibro. He says it tells him that the doctor does not care enough about the patient to investigate further into what is causing the sx's.
You will find many on this board who were dx'd with Fibro first, then an MS dx came after that. But that's not the case with every Fibro dx for everyone.
It takes a good doctor-patient relationship in cases like ours on this board. i don't think you are getting that with the doctor you are seeing -- but that's just my opinion from what you've told us. be your own advocate though. i have often been made to feel that it was all in my head by doctors, but i knew something wasn't quite right and continued to try and investigate as sx's presented themselves.
wishing you well and hope you are doing OK.
blessings,
michelle
I am currently undx'd for MS, but am dx'd as:
Fibromyalgia
Raynaud's
Sjogren's
Insterstitial Cystitis (IC)
Hypothyroid
UCTD (Unspecified Connective Tissue Disease)
tendonitis
TMJ
Migraines
Heart palpitations
My neuro told me that he personally does not like the dx of Fibro. He says it tells him that the doctor does not care enough about the patient to investigate further into what is causing the sx's.
You will find many on this board who were dx'd with Fibro first, then an MS dx came after that. But that's not the case with every Fibro dx for everyone.
It takes a good doctor-patient relationship in cases like ours on this board. i don't think you are getting that with the doctor you are seeing -- but that's just my opinion from what you've told us. be your own advocate though. i have often been made to feel that it was all in my head by doctors, but i knew something wasn't quite right and continued to try and investigate as sx's presented themselves.
wishing you well and hope you are doing OK.
blessings,
michelle
Hope4All
07-10-2007, 11:38 AM
Hi Michelle,
I am going to try one more time to find a "good" dr. I have the MRI and EMG tests coming up.
I do know that many Drs long ago didn't consider MS a real disease, it use to be all in your head. I think it will take time for Drs and everyone else to come around to Fibro being REAL.
I have noticed that many diagnosed with Fibro first do get a diagnosis of MS later down the road. That is why Im on this board along with the Fibro boards. I am keeping an open mind.
Thanks
Hope
I am going to try one more time to find a "good" dr. I have the MRI and EMG tests coming up.
I do know that many Drs long ago didn't consider MS a real disease, it use to be all in your head. I think it will take time for Drs and everyone else to come around to Fibro being REAL.
I have noticed that many diagnosed with Fibro first do get a diagnosis of MS later down the road. That is why Im on this board along with the Fibro boards. I am keeping an open mind.
Thanks
Hope
mnewhall
07-10-2007, 11:46 AM
Hi Hope
Let me clarify too that my neuro also said that the dx'd fibro patient IS having real sx's, it's just lazy docs who don't want to find the reason behind them. He said fibromyaglia (to him) is a cop-out dx.
your sx's are definitely real -- you know your body and you are entitled to get the proper care and help you need by a compassionate doctor - not some nut job ;)
did you try the National MS Society website and find your local MS chapter? You can contact your local chapter for a list of neuros who specialize in MS. Hope this helps.
wishing you well.
blessings,
michelle
Let me clarify too that my neuro also said that the dx'd fibro patient IS having real sx's, it's just lazy docs who don't want to find the reason behind them. He said fibromyaglia (to him) is a cop-out dx.
your sx's are definitely real -- you know your body and you are entitled to get the proper care and help you need by a compassionate doctor - not some nut job ;)
did you try the National MS Society website and find your local MS chapter? You can contact your local chapter for a list of neuros who specialize in MS. Hope this helps.
wishing you well.
blessings,
michelle
jprinz99
07-10-2007, 09:50 PM
Now this isreally getting to be spooky... same thing here right down to being a WallyWorld "donor" Me: a klutzy kid who had really abused her ankles. Long story short is I lost my balance and couple that with some pretty weak ankles and I completely blow one out and sprain the other one. Did the biggie blow out in 3/06, had surgery 7/06 and another in 2/07. I had a crushed bone removed, drilled talus torn tendon repair and all three ligs reconstructed in a modiefied Brostrom procedure - mine are screwed into my fiblua now. Add to that a flare shortly after 3/07 and a balance problem plus vertigo. Let's see... 3/06 to know all on crutches and in some sort of foot contraption like a cast, boot or brace. I think you all get the picture;)
I see Jacobson for my regular ortho stuff (currently my hips), Stewart for my feet (left ankle is waiting its turn). I had been seing Lidman as my rheumie but I quit going as he wasn't actually making me feel any better. He also talked about Fibro or Lupus. Add that to the other autoimmune diagnosises and I could open my own med office.
Jeesh - maybe we should all just go in for a 3some (oops, make that a four-some as we HAVE to bring along Hope even if she isn't from VA!) :jester:
jane
I see Jacobson for my regular ortho stuff (currently my hips), Stewart for my feet (left ankle is waiting its turn). I had been seing Lidman as my rheumie but I quit going as he wasn't actually making me feel any better. He also talked about Fibro or Lupus. Add that to the other autoimmune diagnosises and I could open my own med office.
Jeesh - maybe we should all just go in for a 3some (oops, make that a four-some as we HAVE to bring along Hope even if she isn't from VA!) :jester:
jane
mnewhall
07-11-2007, 11:11 AM
Hi Jane :wave:
I can't believe how closely related our 'stories' are :eek:
I am about done with my rheumie also - she kept looking for signs of lupus and was only prescribing Flexeril for me for fibro. My neuro increased my dosage of it (still doesn't help other than make me fall asleep easy -- staying asleep is another problem!) so I don't believe I will need to see her. She did give me injections in my right hip for bursitis on the outer thigh and the sacrum area.
I know EXACTLY how you feel with the crutches (i opted for a walker with my clumsy self :D). I'm scared to death of reinjuring my left ankle that he did the repair on. i didn't need screws, it was salvagable as it was. he tightened it up pretty good. but i still have pain right over the area he did the work on (2 yrs later!) -- just him barely touching it was painful and when i put my full weight on that ankle it really hurts there -- he said possible scar tissue.
i know i have weak muscles and lax/loose joints. i also believe my interstitial cystitis (IC) is actually a neurogenic bladder. when i first got that dx my pain was so bad in that bladder and all my tests were positive for IC, but after i told the urologist i was being checked for possible MS, he was very interested.
so all of my musculoskeletal issues and neurological are starting to make sense and come together, just not enough yet to give neuro a clear path to make a firm dx of MS. i'm like you with many autoimmune dx's: raynauds, sjogren's, etc etc.
Do you get heart palpitations? Just curious.
We definitely need to make Hope an honorary citizen of VA! :D
Take care my friend,
Blessings,
Michelle
I can't believe how closely related our 'stories' are :eek:
I am about done with my rheumie also - she kept looking for signs of lupus and was only prescribing Flexeril for me for fibro. My neuro increased my dosage of it (still doesn't help other than make me fall asleep easy -- staying asleep is another problem!) so I don't believe I will need to see her. She did give me injections in my right hip for bursitis on the outer thigh and the sacrum area.
I know EXACTLY how you feel with the crutches (i opted for a walker with my clumsy self :D). I'm scared to death of reinjuring my left ankle that he did the repair on. i didn't need screws, it was salvagable as it was. he tightened it up pretty good. but i still have pain right over the area he did the work on (2 yrs later!) -- just him barely touching it was painful and when i put my full weight on that ankle it really hurts there -- he said possible scar tissue.
i know i have weak muscles and lax/loose joints. i also believe my interstitial cystitis (IC) is actually a neurogenic bladder. when i first got that dx my pain was so bad in that bladder and all my tests were positive for IC, but after i told the urologist i was being checked for possible MS, he was very interested.
so all of my musculoskeletal issues and neurological are starting to make sense and come together, just not enough yet to give neuro a clear path to make a firm dx of MS. i'm like you with many autoimmune dx's: raynauds, sjogren's, etc etc.
Do you get heart palpitations? Just curious.
We definitely need to make Hope an honorary citizen of VA! :D
Take care my friend,
Blessings,
Michelle
taosdaphne
07-11-2007, 03:23 PM
Goodness! Yes, spooky--but I live in NM so haven't run into any of you in dr. offices.:)
I have orthopedic probs too, and had a 2 level lumbar fusion and laminectomy in 2005. At my 2 yr checkup I was still on the walker and still falling. Surgeon sent me to a neurologist who had me dx'd with MS within a couple of weeks.
I know the cause of my hip pain. Fell badly in mid May, and hauling myself up really strained the hip--might have torn something in there. It has slowly been getting better on its own, so I'm just letting nature take its course.
Daphne
I have orthopedic probs too, and had a 2 level lumbar fusion and laminectomy in 2005. At my 2 yr checkup I was still on the walker and still falling. Surgeon sent me to a neurologist who had me dx'd with MS within a couple of weeks.
I know the cause of my hip pain. Fell badly in mid May, and hauling myself up really strained the hip--might have torn something in there. It has slowly been getting better on its own, so I'm just letting nature take its course.
Daphne
jprinz99
07-17-2007, 11:44 AM
Palpitations? No but I have neurocardiogenic mediated syncope (an autonomic failure based in my brain). My blood pressure and heartrate respond poorly so I can get lightheaded and/or pass out for a bit. I am on some meds for it and they help greatly. I thought I was having some sort of palpitation some times but my electrocardiologist said it was my heart trying to race up to keep me functioning (he said it was like a form of palps but easily dismaissed as palpitaions or simple orthostatic hypo oe vasovagal response)
Well today I see the otho for my hips and bring the CT scans for him to see. I'll let you know what he says/does.
I did something BIG the other day... I walked without crutches for about 20' (it wasn't pretty and I had to grab the counter/furniture a few times). I also can do short stretches of one crutch walking in the house. I feel so proud. I think I shocked my PT when I told him (actually I don't think he really believed me). We did the one crutch thig in PT while he had a hold of me and I was soso, but all in all he was impressed.
Have actually been feeling better lately. I tend to crash come afternoon or after PT (of course). The heat really gets to me and makes everything worse till I cool down and nap. But; all in all I am starting to see some progress - finally. I was afraid this last flare had left with me stuck with the results I have had the last few months. Glad to know at least one thing is ever so slowly trying to "come back".
The bad news is that I will probably feel much better when I see Snider in Sept. He'll think I am a nut job worrywort with nothing wrong. My husband and I almost wish I was at my worst (like in a flare) so the could a clear picture of what is going on. Ugh!
Well, today is another stay inside day. I am afraid to open my VepCo bill when it does come. I know my dog is getting tired of no dog park outings, but it has been too hot for me lately. Come on Fall...
jane
Well today I see the otho for my hips and bring the CT scans for him to see. I'll let you know what he says/does.
I did something BIG the other day... I walked without crutches for about 20' (it wasn't pretty and I had to grab the counter/furniture a few times). I also can do short stretches of one crutch walking in the house. I feel so proud. I think I shocked my PT when I told him (actually I don't think he really believed me). We did the one crutch thig in PT while he had a hold of me and I was soso, but all in all he was impressed.
Have actually been feeling better lately. I tend to crash come afternoon or after PT (of course). The heat really gets to me and makes everything worse till I cool down and nap. But; all in all I am starting to see some progress - finally. I was afraid this last flare had left with me stuck with the results I have had the last few months. Glad to know at least one thing is ever so slowly trying to "come back".
The bad news is that I will probably feel much better when I see Snider in Sept. He'll think I am a nut job worrywort with nothing wrong. My husband and I almost wish I was at my worst (like in a flare) so the could a clear picture of what is going on. Ugh!
Well, today is another stay inside day. I am afraid to open my VepCo bill when it does come. I know my dog is getting tired of no dog park outings, but it has been too hot for me lately. Come on Fall...
jane
mnewhall
07-17-2007, 02:56 PM
hi jane :wave:
let me know how your appt goes. you know, i was checked for that autonomic whatever because i was so sure i had it, but when they scheduled the tilt table test, the results were normal. it comes and goes with me and is not a constant thing.
when i stand from a sitting position, i will get this throbbing in my head (not pain - just can feel my heart beat in my temples, etc) and my vision gets narrowed (tunnel vision) and i have a rushing sound in my ears and shallow breathing and then shortly after (seconds) it subsides. i've had this for years.
i know you are very proud of yourself for walking without the crutch even such a short distance. sounds like your last relapse took alot out of you.
i know what you mean about wishing you had something to show the neuro. everytime i'm going through something and make an appt, by the time i get there, it's improving :( . same thing with my hip at my ortho appt last thursday. the xrays were fine with the joint but he said where i was describing my pain was more that just a pulled muscle, definitely was some inflammation in the joint. but because i told him it was getting better, he's not too concerned. i go back to see him anyway 2 Aug for my ankle follow up.
hope you have a good doc visit. let me know. stay cool :cool: . i went to a b-day party on Sunday (98F) - a pool party. but my butt is not gettin into any bathing suit ;) , so i just sat there and luckily they had a "clubhouse" there and i had to go inside and sit for a while to cool down.
take care my friend,
blessings,
michelle
let me know how your appt goes. you know, i was checked for that autonomic whatever because i was so sure i had it, but when they scheduled the tilt table test, the results were normal. it comes and goes with me and is not a constant thing.
when i stand from a sitting position, i will get this throbbing in my head (not pain - just can feel my heart beat in my temples, etc) and my vision gets narrowed (tunnel vision) and i have a rushing sound in my ears and shallow breathing and then shortly after (seconds) it subsides. i've had this for years.
i know you are very proud of yourself for walking without the crutch even such a short distance. sounds like your last relapse took alot out of you.
i know what you mean about wishing you had something to show the neuro. everytime i'm going through something and make an appt, by the time i get there, it's improving :( . same thing with my hip at my ortho appt last thursday. the xrays were fine with the joint but he said where i was describing my pain was more that just a pulled muscle, definitely was some inflammation in the joint. but because i told him it was getting better, he's not too concerned. i go back to see him anyway 2 Aug for my ankle follow up.
hope you have a good doc visit. let me know. stay cool :cool: . i went to a b-day party on Sunday (98F) - a pool party. but my butt is not gettin into any bathing suit ;) , so i just sat there and luckily they had a "clubhouse" there and i had to go inside and sit for a while to cool down.
take care my friend,
blessings,
michelle
jprinz99
07-18-2007, 09:56 AM
Saw the OS yesterday. The upshot is that my hips are having problems because of muscle strength & control. I am to add on a hip program in PT and hope that the neurologist can nail this down (my ortho is betting on MS or possibly MD). I don't have to come back for a hipcheck unless I or PT feel the need. PT will send my ortho reports so he can follow along my progress, add input etc. I do have to follow up with my foot ortho so I made that appt. Now we just have to figure out how to best do a foot/ankle, lower leg and now hip progrm all at the same time without one issue making the others worse:confused:
More PT... ugh. It has become my 'job' at least every M/W/F! Dr J said unfortunately my problem is that the muscles are unable to do thier intended job as they are not able to get the correct signals from the ol' brain/nerve/muscle pathway. He said to work as hard as I can to keep what I have without overexerting myself (as muscle fatigue will actually be a bad thing). He said there really is truth to th old adage of "use it or lose it".
Conversely, does this mean that if I sit on my fat as* and do nothing that it will get smaller and smaller over time? hmm...
ROTFL:D :D
More PT... ugh. It has become my 'job' at least every M/W/F! Dr J said unfortunately my problem is that the muscles are unable to do thier intended job as they are not able to get the correct signals from the ol' brain/nerve/muscle pathway. He said to work as hard as I can to keep what I have without overexerting myself (as muscle fatigue will actually be a bad thing). He said there really is truth to th old adage of "use it or lose it".
Conversely, does this mean that if I sit on my fat as* and do nothing that it will get smaller and smaller over time? hmm...
ROTFL:D :D
mnewhall
07-18-2007, 10:24 AM
Hi Jane :wave:
You crack me up!!!!!:jester:
My OS had given me the lidoderm patches for my chronic ankle pain and they've helped, but stop using them and the pain is back (that in combo with Arthrotec). I asked him if I could get a WHOLE BODY PATCH of lidoderm, that could be a good thing.
I'm sorry you are having troubles with your hips. I go through ups and downs with them. I must say I have been very much on the downside physically. i'm now getting this burning sensation on my right shin (inner side) and i just am moving very slow. i've been pretty busy lately - my mom broke her collar bone June 27, one day before we came home from england and i've been helping her and my dad out with everything. she went back last thursday for a followup and the bone had not healed and she had surgery the next morning, so i've still been helping her with things still and i think i'm just getting tired, but i know where my Strength comes from.
I absolutely HATED PT!:( It took me an hour to do PT for just my ankle, i can't imagine 3 different locations. Praying everything goes well for you and that. keep me posted!
How 'bout those thunder boomers we've been having this week?!
blessings,
michelle
You crack me up!!!!!:jester:
My OS had given me the lidoderm patches for my chronic ankle pain and they've helped, but stop using them and the pain is back (that in combo with Arthrotec). I asked him if I could get a WHOLE BODY PATCH of lidoderm, that could be a good thing.
I'm sorry you are having troubles with your hips. I go through ups and downs with them. I must say I have been very much on the downside physically. i'm now getting this burning sensation on my right shin (inner side) and i just am moving very slow. i've been pretty busy lately - my mom broke her collar bone June 27, one day before we came home from england and i've been helping her and my dad out with everything. she went back last thursday for a followup and the bone had not healed and she had surgery the next morning, so i've still been helping her with things still and i think i'm just getting tired, but i know where my Strength comes from.
I absolutely HATED PT!:( It took me an hour to do PT for just my ankle, i can't imagine 3 different locations. Praying everything goes well for you and that. keep me posted!
How 'bout those thunder boomers we've been having this week?!
blessings,
michelle
jprinz99
07-18-2007, 12:33 PM
Your mom broke her collarbone - OUCH, double ouch and then some! Good girl for helping her out, just watch that you don't do more than you can handle as then you would be useless toher and to you;)
As for the thunderstorms - Tyler the wonder dog will chat with you about that later... after he comes out from hiding in the bathtub! Bark, woof, urr {tranlsation: Help God, the world is coming to an end!} At least we got some rain so now the homeowner's association won't get on our backs for brown grass. Untir they volunteer to pay for my water bill I refuse to turn on the hose. In our house we refer to them as the driveway police (and a few other choice words)
As for the thunderstorms - Tyler the wonder dog will chat with you about that later... after he comes out from hiding in the bathtub! Bark, woof, urr {tranlsation: Help God, the world is coming to an end!} At least we got some rain so now the homeowner's association won't get on our backs for brown grass. Untir they volunteer to pay for my water bill I refuse to turn on the hose. In our house we refer to them as the driveway police (and a few other choice words)