meredithcreation
New member
- Joined
- Jun 14, 2009
- Messages
- 4
- Reason
- Friend was DX
- Country
- US
- State
- PA
- City
- Wynnewood
Hi all,
I'm Meredith and I'm trying to help a dear friend get an accurate diagnosis. I happen to have a daughter with a neuromuscular disease called Bethlem Myopathy and I have found that the best information often comes from other people going through the same thing....
My friend Judy is 70 years old and was an athlete and in generally good health. About 18 months ago, she started having trouble with her right foot. Over about 6 to 9 months, she developed foot drop in this foot. She can extend the foot, but cannot flex it. She has no pain in the foot, but with lack of use the muscle is wasting and the opposite muscle/tendons have been tightening. The blood tends to pool in her foot, so the skin often looks red/purple. I think she does not have sensation on the top of the foot and maybe shin.
She has seen a couple of neurologists and finally, at my urging, a rheumatologist recently. She has had a couple EMGs, an MRI of her brain, and MRI and/or CT of her spine. She was found to have some spinal stenosis, I think in the lumbar region, but the neurosurgeon did not think it significant enough to be causing her foot drop, nor to be worth operating on. Her EMGs and I think an NCV ruled out Myasthenia Gravis and were apparently highly suggestive of MND. The rheumatologist ruled out Sjogren's and does not think vasculitic mononeuropathy is likely (not sure why...this was high on my "rule out" list for Judy).
I'm not sure why, but one neuro put her on gamma globulin infusions over the winter. She did not get better, but neither does she appear to have gotten worse.
3 EMGs over 6 months have not shown progression, nor does she appear to have had any other progression since the foot drop developed, so over maybe the past 9 to 12 months. Her other leg is fine, her arms are fine, and her speech and swallowing are fine.
She is, however, struggling with hip and back pain and limping which she attributes to trying to get around with the drop foot over time. Someone made her a crappy orthotic which has a foot-long bottom that is longer than her foot (!) and the metal sides that go up her shin and a strap that velcros to her shin. It is in a fixed 90 degree angle. Because it's so long, she can't get her normal shoe size and I'm encouraging her to at least get the darn thing cut back!
One sign of possible progression that she has revealed to me recently is painless muscle twitching in the thigh of the affected right leg. She attributes the muscle twitching to the limping and the gymnastics she does to walk with her drop foot...I'm not so sure, now, having read more about ALS and PMA.
The local "go to guy" for ALS does think she has ALS and has started her on Riluzole which she is tolerating well, at least.
Judy has no facility with the computer or the internet and her family has no ability to help her navigate the medical maze, so I have been trying to help her as best I can. I have a number of questions, if anyone can give some feedback/guidance...in no particular order:
Any thoughts on/experiences with progression, or the lack thereof, and what it means for diagnosis? My layman's understanding of ALS is that it is typically quite rapidly progressive and if Judy had "classic" ALS, she would probably have had some significant progression, especially to her left leg, by now. This is why I am wondering if her presentation fits PMA more closely?
Any experiences with Riluzole and PMA? My guess is that "it couldn't hurt/might help." Is that a good guess?
Any suggestions for ruling out other diseases/conditions that might account for her foot drop?
Any suggestions for her orthotic? My daughter has had SMOs for years and years and I'm very disgusted by this orthotic that was made for her. Any experiences/suggestions for what would be more effective?
Any suggestions about physical therapy? PT has been recommended to help her walk without so much pain...she has been seeing a chiropractor first, then will start PT in a week. I don't think chiro has done anything for her, but a good friend of hers recommended this guy.
I have the sense that Judy is rather old for onset of ALS/PMA...anyone else have first symptoms at age 70-ish?
Thanks so much,
Meredith
I'm Meredith and I'm trying to help a dear friend get an accurate diagnosis. I happen to have a daughter with a neuromuscular disease called Bethlem Myopathy and I have found that the best information often comes from other people going through the same thing....
My friend Judy is 70 years old and was an athlete and in generally good health. About 18 months ago, she started having trouble with her right foot. Over about 6 to 9 months, she developed foot drop in this foot. She can extend the foot, but cannot flex it. She has no pain in the foot, but with lack of use the muscle is wasting and the opposite muscle/tendons have been tightening. The blood tends to pool in her foot, so the skin often looks red/purple. I think she does not have sensation on the top of the foot and maybe shin.
She has seen a couple of neurologists and finally, at my urging, a rheumatologist recently. She has had a couple EMGs, an MRI of her brain, and MRI and/or CT of her spine. She was found to have some spinal stenosis, I think in the lumbar region, but the neurosurgeon did not think it significant enough to be causing her foot drop, nor to be worth operating on. Her EMGs and I think an NCV ruled out Myasthenia Gravis and were apparently highly suggestive of MND. The rheumatologist ruled out Sjogren's and does not think vasculitic mononeuropathy is likely (not sure why...this was high on my "rule out" list for Judy).
I'm not sure why, but one neuro put her on gamma globulin infusions over the winter. She did not get better, but neither does she appear to have gotten worse.
3 EMGs over 6 months have not shown progression, nor does she appear to have had any other progression since the foot drop developed, so over maybe the past 9 to 12 months. Her other leg is fine, her arms are fine, and her speech and swallowing are fine.
She is, however, struggling with hip and back pain and limping which she attributes to trying to get around with the drop foot over time. Someone made her a crappy orthotic which has a foot-long bottom that is longer than her foot (!) and the metal sides that go up her shin and a strap that velcros to her shin. It is in a fixed 90 degree angle. Because it's so long, she can't get her normal shoe size and I'm encouraging her to at least get the darn thing cut back!
One sign of possible progression that she has revealed to me recently is painless muscle twitching in the thigh of the affected right leg. She attributes the muscle twitching to the limping and the gymnastics she does to walk with her drop foot...I'm not so sure, now, having read more about ALS and PMA.
The local "go to guy" for ALS does think she has ALS and has started her on Riluzole which she is tolerating well, at least.
Judy has no facility with the computer or the internet and her family has no ability to help her navigate the medical maze, so I have been trying to help her as best I can. I have a number of questions, if anyone can give some feedback/guidance...in no particular order:
Any thoughts on/experiences with progression, or the lack thereof, and what it means for diagnosis? My layman's understanding of ALS is that it is typically quite rapidly progressive and if Judy had "classic" ALS, she would probably have had some significant progression, especially to her left leg, by now. This is why I am wondering if her presentation fits PMA more closely?
Any experiences with Riluzole and PMA? My guess is that "it couldn't hurt/might help." Is that a good guess?
Any suggestions for ruling out other diseases/conditions that might account for her foot drop?
Any suggestions for her orthotic? My daughter has had SMOs for years and years and I'm very disgusted by this orthotic that was made for her. Any experiences/suggestions for what would be more effective?
Any suggestions about physical therapy? PT has been recommended to help her walk without so much pain...she has been seeing a chiropractor first, then will start PT in a week. I don't think chiro has done anything for her, but a good friend of hers recommended this guy.
I have the sense that Judy is rather old for onset of ALS/PMA...anyone else have first symptoms at age 70-ish?
Thanks so much,
Meredith