Medical Hot Potato

[abnormal]

I've just got to vent out here.... Now I've been dealing with some serious pain since mid-July in my legs and arms and now my back and even face... I've been chasing around to 5 different doctors to get a handle on it and no answer or real solution to address the problem! I'm ready to start pulling my hair out...<br>I may sound like a broken record but I'll sum it up....<br>I'm 36 with a "mild" case of CF. I had a Grand Mal Seizure in March that led to the discovery of a golf-ball size tumor in my brain that I had resected in April and that all went well.Now starting in July I would wake up with my feet curled up like crow's feet and my ankles and calfs would ache all day... In September I started waking up with my fists clenched so tight my wrists and arms would ache ALL DAY In October the involuntary contractions would occur during the day while I was at rest... Now in December I started noticing my facial muscle having spasms and contracting at night again aching most of the day! Now along with the pain My hands and feet have had the pins & needles and for the most part have a greatly diminished sense of touch, almost NUMB...<br>This is where the game of Medical HOT POTATO starts:Now just having a brain tumor removed recently I started with my neuro-oncologist to see if something was wrong or what... Answer, NO since it's affecting both sides of my body and the location of my tumor they didn't see this as surgery or tumor related. Nor did they feel the Anti-Seizure meds I have to be on would cause this as well... NEXT!Still having issues I saw my other neuro had some blood work done (all good) who agreed with theoncologist's answer and thought it could be some sort of neuropathy due to my CF (vitamin or mineral deficiency) He gave me a script for OTC magnesium and told me to come back for an EMG... OK, NEXT!Did the EMG and his findings where that I have Carpal Tunnel??? Left there with some stupid wrist splints and was told to try that for a while. (still didn't explain my feet or legs) NEXT!I went to my CF doc for a FULL check-up. PFT's good, X-ray and DEXA scans were GOOD All my blood work came back good. I should be just fine on paper... My CF doc did not believe any of my former meds (Cipro, Cayston, Levaquin) would be causing this because I've been off them so long and to rule out my current CF meds he had me taper on and off them to rule them out. Did that and the problems persist. NEXT!!!!I went to mypsychiatristto see if it was depression or my dosage Effexor causing this.... NOPE and she thought my dosage should actually go up... NEXT!My face started giving me problems and my neuro throws another nasty med (Neurontin) my way to combat that, BUT STILL NO ANSWERS!Went to a Chiropractor and he thinks it's med related, of course, or something with my spine and now I've come full circle and still have the problems and NO clue!!! F!@#$%**!Prior to this mess I had minor joint and muscle pain for years but it was manageable, I would give anything to have that back!<br>Any ideas or suggestions would be great.<br>Thanks,<br> Abnormal<br><br>

 

[abnormal]

I've just got to vent out here.... Now I've been dealing with some serious pain since mid-July in my legs and arms and now my back and even face... I've been chasing around to 5 different doctors to get a handle on it and no answer or real solution to address the problem! I'm ready to start pulling my hair out...<br>I may sound like a broken record but I'll sum it up....<br>I'm 36 with a "mild" case of CF. I had a Grand Mal Seizure in March that led to the discovery of a golf-ball size tumor in my brain that I had resected in April and that all went well.Now starting in July I would wake up with my feet curled up like crow's feet and my ankles and calfs would ache all day... In September I started waking up with my fists clenched so tight my wrists and arms would ache ALL DAY In October the involuntary contractions would occur during the day while I was at rest... Now in December I started noticing my facial muscle having spasms and contracting at night again aching most of the day! Now along with the pain My hands and feet have had the pins & needles and for the most part have a greatly diminished sense of touch, almost NUMB...<br>This is where the game of Medical HOT POTATO starts:Now just having a brain tumor removed recently I started with my neuro-oncologist to see if something was wrong or what... Answer, NO since it's affecting both sides of my body and the location of my tumor they didn't see this as surgery or tumor related. Nor did they feel the Anti-Seizure meds I have to be on would cause this as well... NEXT!Still having issues I saw my other neuro had some blood work done (all good) who agreed with theoncologist's answer and thought it could be some sort of neuropathy due to my CF (vitamin or mineral deficiency) He gave me a script for OTC magnesium and told me to come back for an EMG... OK, NEXT!Did the EMG and his findings where that I have Carpal Tunnel??? Left there with some stupid wrist splints and was told to try that for a while. (still didn't explain my feet or legs) NEXT!I went to my CF doc for a FULL check-up. PFT's good, X-ray and DEXA scans were GOOD All my blood work came back good. I should be just fine on paper... My CF doc did not believe any of my former meds (Cipro, Cayston, Levaquin) would be causing this because I've been off them so long and to rule out my current CF meds he had me taper on and off them to rule them out. Did that and the problems persist. NEXT!!!!I went to mypsychiatristto see if it was depression or my dosage Effexor causing this.... NOPE and she thought my dosage should actually go up... NEXT!My face started giving me problems and my neuro throws another nasty med (Neurontin) my way to combat that, BUT STILL NO ANSWERS!Went to a Chiropractor and he thinks it's med related, of course, or something with my spine and now I've come full circle and still have the problems and NO clue!!! F!@#$%**!Prior to this mess I had minor joint and muscle pain for years but it was manageable, I would give anything to have that back!<br>Any ideas or suggestions would be great.<br>Thanks,<br> Abnormal<br><br>

 

[just1more]

It sounds like you have seen a ton of various physicians and not gotten anywhere. While I hate to recommend one more, I'd suggest you find someone that is specifically trained in pain management.

Most are anesthesiologists that are then further trained in diagnosing & treating pain.

You can find a certified pain physician in your area via this site:

https://members.aapainmanage.org/aapmssa/censsacustlkup.query_page

Good luck!

 

[just1more]

It sounds like you have seen a ton of various physicians and not gotten anywhere. While I hate to recommend one more, I'd suggest you find someone that is specifically trained in pain management.

Most are anesthesiologists that are then further trained in diagnosing & treating pain.

You can find a certified pain physician in your area via this site:

https://members.aapainmanage.org/aapmssa/censsacustlkup.query_page

Good luck!

 

[abnormal]

Thanks for the suggestion... A true diagnois of what is causing the pain is my main focus and then go from there with some sort of a management plan for it... I don't just what to pop pills to hide the problem, especially if it is something serious.

 

[abnormal]

Thanks for the suggestion... A true diagnois of what is causing the pain is my main focus and then go from there with some sort of a management plan for it... I don't just what to pop pills to hide the problem, especially if it is something serious.

 

[dbsholes]

I don't want to oversimplify what you're going through. It sounds awful. But sometimes the simple things escape notice when something complex is going on. So..... Make sure you have a current and ongoing knowledge of what your Vitamin D levels are. Vitamin D is related to pain in all kinds of strange and complex ways and people with CF don't absorb it unless they are taking specially absorbable supplements. It's always worth looking at.

Good luck and keep us posted
David Sholes
Bennington Vermont
44y/o male dx 8mos; DDF508; CFRD; and cf-related arthritis largely controlled by Vitamin D

 

[dbsholes]

I don't want to oversimplify what you're going through. It sounds awful. But sometimes the simple things escape notice when something complex is going on. So..... Make sure you have a current and ongoing knowledge of what your Vitamin D levels are. Vitamin D is related to pain in all kinds of strange and complex ways and people with CF don't absorb it unless they are taking specially absorbable supplements. It's always worth looking at.

Good luck and keep us posted
David Sholes
Bennington Vermont
44y/o male dx 8mos; DDF508; CFRD; and cf-related arthritis largely controlled by Vitamin D

 

[Isaiah53]

Ouch! this sounds terrible. I have to agree with dbsholes though. The cramping sounds like Vit D deficiency and the Tingling sounds like hypocalcemia. It's amazing how intricate our bodies are and how debilitating a poor diet can be, or in our case malabsorption. I have to assume that one of the docs checked these no-brainer labs, but sometimes docs are so intently looking for the needle in the haystack that they miss the tractor parked in it. Was your tumor near your pituitary?? I would think about seeing an endocrinologist or at least request to have your thyroid and pituitary levels drawn as well as your Calcium and Vit D.

At the end of the day, our only hope is in our Lord. If you don't know Him personally, open your heart and get to know Him. Jesus is my Rock! The storms WILL come, but I will NOT be moved. - from Matthew 7, Read it - it's short and AWESOME!

My Prayer: May our God reveal Himself to you in a new way today and give you peace and comfort through this time of suffering, for we(who are in Christ Jesus) know " ...that our present sufferings are not worth comparing with the glory that will be revealed in us. (Romans 8:18)"

Praise God!

 

[Isaiah53]

Ouch! this sounds terrible. I have to agree with dbsholes though. The cramping sounds like Vit D deficiency and the Tingling sounds like hypocalcemia. It's amazing how intricate our bodies are and how debilitating a poor diet can be, or in our case malabsorption. I have to assume that one of the docs checked these no-brainer labs, but sometimes docs are so intently looking for the needle in the haystack that they miss the tractor parked in it. Was your tumor near your pituitary?? I would think about seeing an endocrinologist or at least request to have your thyroid and pituitary levels drawn as well as your Calcium and Vit D.

At the end of the day, our only hope is in our Lord. If you don't know Him personally, open your heart and get to know Him. Jesus is my Rock! The storms WILL come, but I will NOT be moved. - from Matthew 7, Read it - it's short and AWESOME!

My Prayer: May our God reveal Himself to you in a new way today and give you peace and comfort through this time of suffering, for we(who are in Christ Jesus) know " ...that our present sufferings are not worth comparing with the glory that will be revealed in us. (Romans 8:18)"

Praise God!

 

[JustDucky]

I wonder if the neuro has considered an inherited metablolic disorder that affects muscles (there are several)....symptoms can be what you describe. Many people with these disorders often find that their symptoms are exacerbated by exercise (their muscles cramp/contract worse). Mind you, they are fairly uncommon....but if they have ruled out everything else, it wouldn't hurt to look into this cause. Here's a link to metabolic diseases of the muscle : http://www.mda.org/publications/fa-metab-qa.html
It could also be that your electrolytes are really low....especially your Magnesium, Calcium and Potassium.

All of this sounds terrible and so frustrating...I really do hope you get answers soon.

Jenn w/CF

 

[JustDucky]

I wonder if the neuro has considered an inherited metablolic disorder that affects muscles (there are several)....symptoms can be what you describe. Many people with these disorders often find that their symptoms are exacerbated by exercise (their muscles cramp/contract worse). Mind you, they are fairly uncommon....but if they have ruled out everything else, it wouldn't hurt to look into this cause. Here's a link to metabolic diseases of the muscle : http://www.mda.org/publications/fa-metab-qa.html
It could also be that your electrolytes are really low....especially your Magnesium, Calcium and Potassium.

All of this sounds terrible and so frustrating...I really do hope you get answers soon.

Jenn w/CF

 

[abnormal]

Thanks for the input guys.... Now I've been a human pin cushion when comes to blood work as of late and all my Vitamin D levels, magnesium, potassium, electrolytes, etc.. have come back with flying colors, every time. From a CF stand point I should be fine and currently from a neuro stand point I'm should be fine. In there lays my problem... Its not that my docs aren't trying to figure this out but it almost seems like they're focused on just one piece of my medical quandary and or just trying to cover their butts... Which is fine and I understand but some one needs to step back and take a look at the whole picture or really start to think out side of the box...
And Just Ducky, I'm starting to pursue the the possibilities of another disorder or disease with my next neuro visit... Not that I need one or something but an answer to all this is needed!

Thanks Again,
Abnormal

 

[abnormal]

Thanks for the input guys.... Now I've been a human pin cushion when comes to blood work as of late and all my Vitamin D levels, magnesium, potassium, electrolytes, etc.. have come back with flying colors, every time. From a CF stand point I should be fine and currently from a neuro stand point I'm should be fine. In there lays my problem... Its not that my docs aren't trying to figure this out but it almost seems like they're focused on just one piece of my medical quandary and or just trying to cover their butts... Which is fine and I understand but some one needs to step back and take a look at the whole picture or really start to think out side of the box...
And Just Ducky, I'm starting to pursue the the possibilities of another disorder or disease with my next neuro visit... Not that I need one or something but an answer to all this is needed!

Thanks Again,
Abnormal

 

[JustDucky]

I get you as far as tunnel vision goes, sometimes it is hard for the doc to look outside the box and are too quick to blame CF. I have chronic pain issues and have had doctors ranging from just plain insensitive, chalking it all up to being a mom with kids or even having psychosomatic pain and labeled a med seeker, which I knew wasn't the case., to doctors that were phenomenal and wanted answers as badly as I did. I moved on to other docs until I found one that took me seriously. It took a geneticist to diagnose yet another inherited disorder called Ehlers Danlos....basically it means I have problems with my collagen being too elastic, thus making it easy to dislocate my joints along with a myriad of other problems associated with this syndrome. . I have been dislocating joints since 8 years old....all of this causes chronic pain. Anyhow, I was very relieved to find the answer to my chronic pain (which obviously can't be seen on a xray, so I was foo fooed often) and now have appropriate pain control measures. Most importantly, I am taken seriously.

I hope the same for you, keep at it if you aren't satisfied. It definitely sounds like they need to look in directions other than CF related problems. Hang in there, don't lose hope....someone has got to have an explanation.

Jenn w/CF

 

[JustDucky]

I get you as far as tunnel vision goes, sometimes it is hard for the doc to look outside the box and are too quick to blame CF. I have chronic pain issues and have had doctors ranging from just plain insensitive, chalking it all up to being a mom with kids or even having psychosomatic pain and labeled a med seeker, which I knew wasn't the case., to doctors that were phenomenal and wanted answers as badly as I did. I moved on to other docs until I found one that took me seriously. It took a geneticist to diagnose yet another inherited disorder called Ehlers Danlos....basically it means I have problems with my collagen being too elastic, thus making it easy to dislocate my joints along with a myriad of other problems associated with this syndrome. . I have been dislocating joints since 8 years old....all of this causes chronic pain. Anyhow, I was very relieved to find the answer to my chronic pain (which obviously can't be seen on a xray, so I was foo fooed often) and now have appropriate pain control measures. Most importantly, I am taken seriously.

I hope the same for you, keep at it if you aren't satisfied. It definitely sounds like they need to look in directions other than CF related problems. Hang in there, don't lose hope....someone has got to have an explanation.

Jenn w/CF