NeuroTalk Support Groups - Internal RSD??

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Internal RSD?? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/181038-internal-rsd.html)

Yes my former nephroligist told me once I was in my early teens and then kept reminding me that it was a high chance that eventually i would most likely need a kidney transplant due to having hypertention my whole entire life and because my kidneys produce renin all the time which of course they should never do. So I need to see a new neuro, a new nephroligist and a new PM. The new year is gonna be great! My neuro did think that the vascular issues are all linked to each other in some way but didnt know how.

Quote:

Originally Posted by Neurochic (Post 941372)

I know first hand how draining it is to have to fight the medical profession once you have a diagnosis of CRPS. It's hard going and it does feel like you have been 'dealt a bad hand' sometimes.

I appreciate from what you have said that you have lots of complications and no formal diagnosis of CRPS. It's difficult because it can be very tricky to diagnose and many of the clinical signs and symptoms are found in other conditions or as a result of other injuries or problems. It's only my personal view but I do think its risky to assume that everything going wrong with your body is a consequence of the CRPS. I tend to do the opposite and assume its nothing to do with my CRPS until I can try to have any other cause ruled out. It isn't always easy or possible but I figure that way I'm not leaving potentially serious thing un-investigated.

The hypertension you have had since you are a toddler is a well known and common cause of vascular kidney problems later on. These vascular problems are not the same as the vascular problems that can be caused by CRPS or malfunctioning of the autonomic nervous system. Hypertension (high blood pressure) is a leading cause of the vascular damage which leads to kidney disease and kidney failure. That is why this risk was identified early on in your childhood when your hypertension was identified.

Please go and get your kidney problems properly checked out. For the reasons I've mentioned it's highly unlikely that this has anything to do with CRPS and as I'm sure you will appreciate, end stage kidney failure means a person needs dialysis or transplant. I know you are tired and fed up with your treatment but you need to have this checked out.

"My neuro did think that the vascular issues are all linked to each other in some way but didnt know how."

That doesn't inspire much confidence does it?!! Maybe he should leave the real medicine to someone who knows one end of the human body from the other!!!

Exactly! And I didnt know any of this about kidneys until I recieved my medical notes saying that an MRA was recomended stating that "evidence of vascular desease is present in kidneys and could all possibly be linked". And the only way he could have known somthing was up with my kidneys was by blood work I had done and he did not mention anything other then I needed to go see a dr, and to tell me to just go see a dr without a reason, well then im not gonna make the appt. So I do have all my appts scejuled now with all 3new drs in Feb. I know its gonna be alot of testing going on so I will need to be ready. I actually fear the PM dr more then the others. I trust the other 2 can manage those 2 conditions, But I dont trust the PM dr to help with the RSD.

Quote:

Originally Posted by Neurochic (Post 941520)

Well, I just hope that they are able to help with your longstanding high blood pressure and kidney disease issues before those become too serious. That seems to be the real priority for you at the minute given the potential prognosis if it isn't managed. The CRPS and other problems might be difficult but they pale into insignificance if you are faced with failure of these two rather critical organs.

I know that a patient at my pain centre has RSD in his/her bladder. I have never met him/her and only know by what my doc and nurses have told me.

I have RSD in my vulva/vagina , which is why I know about the aforementioned patient. My specialists were explaining the ways RSD can attack internal organs.

(My RSD started in my right foot in 2007 btw: remained static until 2011, then rapidly spread throughout entire lower body to hip areas. )

Alice

Dear Alice - I have RSD in all four limbs - systemic. I am due to have a D and C in Jan and my PM doc says you cannot get RSD spread in the female organs ... hence not to be concerned about the D and C. Any advice?\thanks

rsd and internal organs

Quote:

Originally Posted by tos8 (Post 939428)

Ok we just got a report from my neuro that my old neuro wanted me to see a nephroligist because he thinks theres evidence of vasculaler kidney problems. Now heres where it gets complicated, I have had hypertention since i was a toddler. So yes theres always been that thing as to where at some point in time i could develope problems with my kidneys. However this is maybe vascular issues. So does anybody have any issues with RSD attacking there kidneys? Because its only gonna be narrowowed down to 2 things. RSD or hypertention. And im leaning towards RSD. So can anybody help me out?? Exspecially since I see my new PM next week and he has no idea how to manage RSD.

Hi tos8, sorry you are having kidney problems. RSD is an autonomic condition, which means our sympathetic and para sympathetic nervous systems do not regulate our blood pressure, body temperature, heart rate etc. properly. If you look up autonomic condition, sympathetic nervous system, and para sympathetic nervous systems, on the internet, it explains their roles in our body. RSD is a disregulation of these systems.. If you look up rsdrx.com and go to puzzles 1-146 Dr. Hooshmand explains under puzzle 34 that rsd does affect our internal organs. Because rsd causes both high and low blood pressure, the high blood pressure can damage the kidneys.
The low blood pressure can cause us to pass out. The vegas nerve causes our heart rate to drop and pass out. Vegas nerve is pare of the autonomic nervous system. My dr. just called to tell me I have blood in urine so will get follow up testing. Hope this helps. RSD is an inflammatory disorder so can damage the internal organs like kidneys, heart, with inflammation. Hope this helps a little. I've had RSD since about 1996 following surgery. full body. Take care and let us know how you are doing please. your friend, loretta

Quote:

Originally Posted by sallysue (Post 942242)

I sally sue, sorry to hear of your full body rsd. I have full body too, since 1996.Please research rsd and the d&C procedure fully. www.rsdrx.com has some information about rsd and internal organ involvement. puzzles 1-146 has information under puzzle #34 and #127. You might look up the info on 127 and research it. I've had a d&c years ago, but before rsd. Dr. Hooshmands website is still up, but I believe he retired. That question-127 mentioned interstitial cystitis
I have looked it up, but will do some research on it myself. Hope this helps. I know I'm scared to death to even go to the dentist for fear of getting rsd in my mouth. I take an antibiotic before any procedure, and 'laughing gas' to relax/ Others have said we can get rsd in our mouth. Hope this helps- your friend, loretta:)

Quote:

Originally Posted by whereisfunkytown (Post 942226)

Hi Alice, sorry about your spread and internal organs. I mentioned www.rsdrx.com then go to puzzles #34 and #127 have information on spread to internal organs including vulvodynia.
I've had RSD for 16 years now and just found out I have blood in urine so now checking out more tests to find out whats going on.
What is the plan for your internal involvement? Is there any treatment?
Hope you did some effective treatment. Your friend, loretta:)

Hi TOS8,

boy your rant about the "surgery that butchered" you really made me sad. You are too young to be suffering with this! I know what you have had because I had that same surgery.

With regard to your question about what caused your kidney vascular change, I am going to agree with Neurochic and vote for the Hypertension.

There are so many people struggling with many medically complex illnesses on these forums and they have done alot of research and some of them are medical professionals themselves so there is alot of great advice on here and alot of people that want to help I have found. However, there are also regional differences and Medicine is also an Art, so not all doctors practice medicine the same way, and certain states have different rules for Pain Medication prescribing, etc., so not all Advice applies.