Neuropathy from CF?

[Jane]

There are so many factors in diagnosing the problem. I agree with Chrissy- keep digging until you get answers. Good luck!
<br /> Bill, my husband's father also had Charco Marie Tooth syndrome. I have never heard of anyone else having it. Interesting.
<br />
<br />Tonya, both my kids had some neuropathy after months of linezolid. It did improve after stopping the med.

 

[JenWren]

Mmm, the contracted feet and hands makes me think of siezures. Of course seizures range from mild to Grand Mall, I have had both. When labs were done my Calcium and Vit D were both really low due to malabsorbtion. The seizures left me with pins and needles in one leg for many years later. due to nerve damage during my seizures. The condition for me was called synchopy. Cough sychopy is when a cough or straining in any way such as a bowel movement can cause , if your Calcium and Vit D levels are low, this causes our blood levels to drop too low which brought me below my seizure threshold. I always wondered if anyone else had experiences this till I met someone about my age may years ago who would have similar symtoms. She used to say her legs would go numb and she would get light headed while having a difficult Bm. That's how mine started as well. Ignoring it things developed into full blown Grand Mall. I have been seizure free for many years since. I had to start a seizure drug and keep atop of my C and D levels.
I hope this gives you some more information to hand over to the doctor.

 

[JenWren]

Mmm, the contracted feet and hands makes me think of siezures. Of course seizures range from mild to Grand Mall, I have had both. When labs were done my Calcium and Vit D were both really low due to malabsorbtion. The seizures left me with pins and needles in one leg for many years later. due to nerve damage during my seizures. The condition for me was called synchopy. Cough sychopy is when a cough or straining in any way such as a bowel movement can cause , if your Calcium and Vit D levels are low, this causes our blood levels to drop too low which brought me below my seizure threshold. I always wondered if anyone else had experiences this till I met someone about my age may years ago who would have similar symtoms. She used to say her legs would go numb and she would get light headed while having a difficult Bm. That's how mine started as well. Ignoring it things developed into full blown Grand Mall. I have been seizure free for many years since. I had to start a seizure drug and keep atop of my C and D levels.
I hope this gives you some more information to hand over to the doctor.

 

[JenWren]

Mmm, the contracted feet and hands makes me think of siezures. Of course seizures range from mild to Grand Mall, I have had both. When labs were done my Calcium and Vit D were both really low due to malabsorbtion. The seizures left me with pins and needles in one leg for many years later. due to nerve damage during my seizures. The condition for me was called synchopy. Cough sychopy is when a cough or straining in any way such as a bowel movement can cause , if your Calcium and Vit D levels are low, this causes our blood levels to drop too low which brought me below my seizure threshold. I always wondered if anyone else had experiences this till I met someone about my age may years ago who would have similar symtoms. She used to say her legs would go numb and she would get light headed while having a difficult Bm. That's how mine started as well. Ignoring it things developed into full blown Grand Mall. I have been seizure free for many years since. I had to start a seizure drug and keep atop of my C and D levels.
<br />I hope this gives you some more information to hand over to the doctor.

 

[JenWren]

I also learned recently that Cipro "CAN" cause hand pain and rotater cuff ruptures and thumb ruptures. All of which I have experienced. This pain and discomfort usually follows a week or so after a hospitalization. The Doctor I went to for help with this pain is a Bone doctor and she printed out the information on this subject. Very helpful to know the source of some of this wierd @$^ pain we get.

JenWren CF CFRD

 

[JenWren]

I also learned recently that Cipro "CAN" cause hand pain and rotater cuff ruptures and thumb ruptures. All of which I have experienced. This pain and discomfort usually follows a week or so after a hospitalization. The Doctor I went to for help with this pain is a Bone doctor and she printed out the information on this subject. Very helpful to know the source of some of this wierd @$^ pain we get.

JenWren CF CFRD

 

[JenWren]

I also learned recently that Cipro "CAN" cause hand pain and rotater cuff ruptures and thumb ruptures. All of which I have experienced. This pain and discomfort usually follows a week or so after a hospitalization. The Doctor I went to for help with this pain is a Bone doctor and she printed out the information on this subject. Very helpful to know the source of some of this wierd @$^ pain we get.
<br />
<br />JenWren CF CFRD

 

[abnormal]

Jen, Funny you mention seizures... The reason I'm seeing a neurologist is because I discovered I had a brain tumor last spring after having a Grand Mall seizure. I since had the tumor resected and my first thought was my problems were related to the tumor and or the surgery. Both my neuro docs have all but ruled that out due to the location of the tumor but I feel further testing needs to be done to be absolute. Plus they feel with the anti-seizure meds I'm on I shouldn't be getting these problems via the brain...
My latest blood work came back good on all counts but I've had borderline low vitamin D levels in the past. Who knows? For years I get the full run-up on all the blood work and x-rays, DEXA & CAT scans and they still missed the golf ball sized tumor I had growing inside me...
I'll just keep pushing the issue until they figure some out and I'll definitely will be up what you mentioned.

Thanks,
Abormal
36 w/ CF

 

[abnormal]

Jen, Funny you mention seizures... The reason I'm seeing a neurologist is because I discovered I had a brain tumor last spring after having a Grand Mall seizure. I since had the tumor resected and my first thought was my problems were related to the tumor and or the surgery. Both my neuro docs have all but ruled that out due to the location of the tumor but I feel further testing needs to be done to be absolute. Plus they feel with the anti-seizure meds I'm on I shouldn't be getting these problems via the brain...
My latest blood work came back good on all counts but I've had borderline low vitamin D levels in the past. Who knows? For years I get the full run-up on all the blood work and x-rays, DEXA & CAT scans and they still missed the golf ball sized tumor I had growing inside me...
I'll just keep pushing the issue until they figure some out and I'll definitely will be up what you mentioned.

Thanks,
Abormal
36 w/ CF

 

[abnormal]

Jen, Funny you mention seizures... The reason I'm seeing a neurologist is because I discovered I had a brain tumor last spring after having a Grand Mall seizure. I since had the tumor resected and my first thought was my problems were related to the tumor and or the surgery. Both my neuro docs have all but ruled that out due to the location of the tumor but I feel further testing needs to be done to be absolute. Plus they feel with the anti-seizure meds I'm on I shouldn't be getting these problems via the brain...
<br />My latest blood work came back good on all counts but I've had borderline low vitamin D levels in the past. Who knows? For years I get the full run-up on all the blood work and x-rays, DEXA & CAT scans and they still missed the golf ball sized tumor I had growing inside me...
<br />I'll just keep pushing the issue until they figure some out and I'll definitely will be up what you mentioned.
<br />
<br />Thanks,
<br />Abormal
<br />36 w/ CF

 

[abnormal]

So it's back to square one on the pain issue for me... The neurologist did an EMG and thinks I have mild carpal tunnel which could explain my hands clenching at night and arms aching all day, so he gave me some splints to try and see if that helps... As for the joint pain and muscle aches elsewhere he felt that my some of my medications could be causing it and since the EMG did not show any major nerve damage he would like to see what time would tell since my symptoms kinda correlated with taking Cayston and Cipro. I've been off both for about 2 months and he thinks I need a little more time to get the junk totally out of my system! !@#$%!!!! I feel like a dog chasing his tail with this!

 

[abnormal]

So it's back to square one on the pain issue for me... The neurologist did an EMG and thinks I have mild carpal tunnel which could explain my hands clenching at night and arms aching all day, so he gave me some splints to try and see if that helps... As for the joint pain and muscle aches elsewhere he felt that my some of my medications could be causing it and since the EMG did not show any major nerve damage he would like to see what time would tell since my symptoms kinda correlated with taking Cayston and Cipro. I've been off both for about 2 months and he thinks I need a little more time to get the junk totally out of my system! !@#$%!!!! I feel like a dog chasing his tail with this!

 

[abnormal]

So it's back to square one on the pain issue for me... The neurologist did an EMG and thinks I have mild carpal tunnel which could explain my hands clenching at night and arms aching all day, so he gave me some splints to try and see if that helps... As for the joint pain and muscle aches elsewhere he felt that my some of my medications could be causing it and since the EMG did not show any major nerve damage he would like to see what time would tell since my symptoms kinda correlated with taking Cayston and Cipro. I've been off both for about 2 months and he thinks I need a little more time to get the junk totally out of my system! !@#$%!!!! I feel like a dog chasing his tail with this!