HELP! IS THERE SUCH A THING ANYMORE? DR'S PUT YOU ON MEDS, THEN YOU'RE ON YOUR OWN!

[norahjoans]

I WAS DISGONOSED WITH CRPS IN 2010 IN BOTH MY LEGS WITH THE PRIMARY SOURCE BEING MY RIGHT KNEE FOLLOWING BOTCHED KNEE REPLACEMENT SURGERY. I HAVE HADE RLS ALL MY LIFE ALSO. MY NEUROLOGIST PUT ME ON REQUIP 3MG QHS ABOUT 3 YEARS AGO RIGHT ABOUT THE SAME TIME WHEN MY PAIN MANANAGEMENT DR PUT A MEDTRONICS STIMULATOR IN ME. THE MEDTRONICS UNIT DID VERY LITTLE TOO HELP AND I STILL HAD TO STAY ON MEDS. LAST JUNE I BECAME VERY ILL FROM ONE OF THE PAIN MEDS MY PAIN DR GAVE ME AND MY WEIGHT WENT DOWN TO 94 LBS. FROM MY USUAL 11O. I WAS SO SICK MY UNIT WAS LITERALLY COMING THRU MY SKIN AND ALL OF A SUDDEN MY PAIN DR ACTED LIKE HE DIDN'T EVEN KNEW WHO I WAS! I WENT TO THE CCF PAIN MANAGEMENT DEPARTMENT TO THE DR THAT ORIGINALLY DIAGNOSED ME WITH CRPS AND HE SAID THE FIRST THING WAS TO REMOVE THE MEDTRONICS UNIT FROM MY BACK BEFORE IT BROKE THRU MY SKIN. THEN HE TALKED ME INTO GETTING A DRG IMPLANT UNIT PUT IN. I WANTED TO WAIT TO DO THAT AS I WAS SUPPOSED TO TAKE A VACATION AND I WANTED TO HEAL, PLUS I STILL WEIGHED ONLY ABOUT 100 LBS. KNOWING I WAS GOING 5000 MILES AWAY WITHOUT MY HUSBAND AND HAVING NOTHING TO TAKE WITH ME FOR PAIN I WAS TOO AFRAID TO GO BECAUSE MY DR REFUSED TO GIVE ME ANY MEDICATION AND SAID I HAD TO COME IN AND GET THE TRIAL DRG IMPLANT DONE. PERIOD. I HAD TO CANCEL A VACATION THAT WAS PLANNED FOR OVER A YEAR. NO CHOICE SO I HAD THE TRIAL IMPLANTED AND IT WORKED PERFECTLY. NO MORE CRPS PAIN! I COULDN'T BELIEVE IT! THEN OCTOBER 11TH, 2016 THE PERMANENT DRG IMPLANT WAS INSERTED AND HASN'T WORKED AT ALL. 0%. ZERO RELIEF. NOT ONE PERSON CAN TELL ME WHY THE TEMPORARY IMPLANT WORKED BUT NOT THE PERMANENT ONE, BUT I'VE BEEN TOLD I'M NOT THE ONLY ONE THIS HAS HAPPENED TO. I HAVEN'T SLEPT MORE THAN 2 HOURS AT NIGHT SINCE OCTOBER 11TH AND MY CRPS IS BACK WITH A VENGEANCE AND IT INCREASED MY RLS 200%. MY RLS NOW STARTS IN THE MORNING EVERY SINGLE DAY. MY NEUROLOGIST INCREASED MY REQUIP TO 6MG A DAY AND NOW I HAVE 27 EXTRA POUNDS OF WEIGHT TO CARRY ON MY AL READY SHOT KNEE. THE SURGEON WHO PUT THE DRG IN DOESN'T BELIEVE THAT UNIT CAUSED THE INCREASED RLS OR OTHER HORRIBLE SIDE EFFECTS I'M GETTING AND MY NEUROLOGIST DOESN'T BELIEVE REQUIP CAN CAUSE WEIGHT GAIN OR THE OTHER SIDE EFFECTS THE EXTRA REQUIP IS GIVING ME AND REFUSES TO CHANGE MY MED. GETTING OFF OF REQUIP WHICH IS A "DOPAMINE AGONIST" IS EQUAL TO WITHDRAWAL FROM COCAINE AND AMPHETAMINES. SO DO YOU THINK I CAN SEE ANY SLIGHTLY FLICKER OF LIGHT AT THE END OF THE TUNNEL? IF NOTHING ELSE, I HOPE WHAT I HAVE WRITTEN HELPS PEOPLE IN A FEW WAYS. 1. DON'T HAVE A MEDTRONICS STIMULATOR IMPLANTED 2. DON'T LET ANYONE TALK YOU INTO GETTING THE "NEW BREAK-THROUGH IN PAIN RELIEF" AKA THE DRG IMPLANT UNIT AND 3. DON'T GO TO THE CLEVELAND CLINIC FOUNDATION BECAUSE YOU WILL NOT GET "WORLD CLASS CARE" ASK THEY PROCLAIM. IF ANYONE CAN AT THE VERY LEAST CAN TELL ME HOW TO GET THIS WEIGHT TO BUDGE, PLEASE LET ME KNOW. RIGHT NOW I'M SO DEPRESSED, I'M BARELY EATING, AND I DON'T EVEN WANT TO LEAVE MY HOUSE.

[parkie13]

I am so very sorry. I really feel for you and your predicament

[norahjoans in reply to parkie13]

THANK YOU SO MUCH 💜

[999---666]

I believe going to a doctor accompanied by family reaps a certain amount of respect..and if you have a son with some kind of credentials you're very , very...? more respect? credibility? competent? witnesses that can sue, advise, consult and research for you.

[soup]

Sorry, I am confused. Do you have Parkinson's?

[norahjoans in reply to soup]

NO, I DON'T THANK GOD. I HAVE HAD CRPS, CHRONIC REGIONAL PAIN SYNDROME IN BOTH MY LEGS SINCE JULY, 2010, 24/7, 365 DAYS A YEAR AND THAT’S WHEN MY LIFE AS I KNEW IT ENDED. I T0RE MY ACL IN JUNE 2009 AND 1 MONTH LATER AFTER SIDE STEPPING OVER A SHOE BOX I BLEW THE REPAIR OUT. (MY SURGEON AT THE TIME SAID TO COME BACK IN 6 WEEKS "THAT I PROBABLY JUST TORE A TENDON". WELL I DIDN’T JUST TEAR A TENDON, THERE WAS NOTHING LEFT OF MY RIGHT KNEE, I WAS BONE TO BONE. THEN MY NEW SURGEON HAD A FEELING THAT I HAD ALOT OF NERVE DAMAGE AND I WAS DIAGNOSED WITH THE CRPS. I AM NOW 61 YEARS OLD. THE CRPS PAIN IS STILL THERE AND IS SO SEVERE THERE ARE MANY MANY TIMES I HAVE TOLD MY DR'S I WOULD RATHER DIE WITH THIS PAIN THAN CONTINUE TO LIVE WITH IT. I HAVE BEEN EVERYONE'S GUINEA PIG. IF THERE IS ANY LIGHT AT THE END OF THE TUNNEL I CERTAINLY DON'T SEE IT ANYMORE. IF I COULD GIVE ANYONE ADVICE IT WOULD BE "STAY AWAY FROM THE CLEVELAND CLINIC BECAUSE THEY CERTAINLY ARE NOT FIRST IN WORLD CLASS CARE LIKE THEY SAY THEY ARE." YOU'LL JUST END UP BEING ANOTHER ONE OF THEIR EXPERIMENTS AND IF IT DOESN'T WORK OUT TO THEIR EXPECTATIONS YOU ARE COMPLETELY TOSSED ASIDE. THEY HAVE NO FURTHER USE FOR YOU. THEY JUST MOVE ON TO THE NEXT HELPLESS VICTIMS. GREAT PAIN MANAGEMENT DEPARTMENT THAT WON'T GIVE YOU ANYTHING FOR PAIN. OPERATE, YES. MEDS, ABSOLUTELY NO.

[Hikoi in reply to norahjoans]

Norahjones

You have just joined this forum which is to discuss issues related to Parkinsons so im not quite sure how you ended up here but there are a number of other forums that could be more suitable and helpful. They focus on pain.

You can find them by going to the top of the page and clicking on the dropdown menu on My Communities then Click Browse Communities.

Good luck.

[paddyfield]

When seeing medics or indeed other organisations a witness with you ups their game. I have not got anyone (I don't like to ask mu sons just yet) but its good advice in any fraught situation. as your companion has an overview and can intervene when the discussion is going pear shaped although it doesn't as if your medics believe much in discussion.

[999---666]

medicine has become adversarial....always was class oriented and in need of "subjects" ....furthermore economics have produced a two tier medical service......."for the greater good" is what I hear these days......don't mean to alarm you.....but I believe "they've run outa nigers" and are more "politically correct" these days, but das all.

[Hikoi]

Norahjones

What is CRPS?

[norahjoans in reply to Hikoi]

CRPS IS CHRONIC REGIONAL PAIN SYNDROME.

[honeycombe3]

Hi there,

Like Soup I find your post confusing: have you been dxd with PD? I have been dxd for nearly 13 years now & the only med I have taken consistently is Requip (Ropinirole). Although PD symptoms & treatments vary widely, in order for the condition to be identified there are some which are specific to it either on their own or in certain combinations (eg dragging legs or feet & tremor indicate PD but pus-filled blisters & blindness don't).

Some things we have in common: pain, botched surgery, RLS, Ropinirole (Requip), weight gain (3 stones), allergies, having another major condition

Some places we differ: clarity of diagnosis (dx), quality of advice, quality of support, attitude to condition, level of personal responsibility, level of self-help

Some things we have in common:

I am never without pain mainly from PD but also from botched surgery on my left foot which has major impact on my posture & gait. My RLS, resulting from PD meds, is so bad I have landed on the bedroom floor many times. To counteract it take Amantadine twice a day. Ropinirole/Requip I have taken for 12 years & for at least 10yrs it was main support prior to adding Sinemet. My weight ballooned by 3 stones very quickly so I looked for an alternative or an antidote. There was no alternative - having slowly titrated down from my max 16mg per day to zero I couldn’t manage without it but I titrated up to 8mg & this suits. To address the binge eating it causes which piles on weight I looked for a competent hypnotherapist & I have now been with him 5 years minus that 3 stone & another 2 on a good day. I stressed the brand Requip because recently my whole system ‘froze’ & I was stranded for 4 days on my bed - very, very frightening. My consultant had come across this recently & it was caused by changing to another brand Repinex. I am assuming that the reaction to one of your pain meds was due to an allergy: I was desensitised to bee venom over 3 years after becoming sensitive to it. My husband is a bee farmer. My other major condition is heart failure - I have had 2 heart attacks 2011 & 2013 with 2 stents fitted. This limits my pain relief as I cannot take anti-inflammatories.

Some places we differ:

I have a definite dx further backed up by MRI & many other tests as part of a clinical trial (this was a 3 yr stem cell transplant trial). My consultant knows more about PD than me & can thus offer me useful advice. With all the literature from research into drug & other treatments into PD to find a ‘consultant’ who DOESN'T BELIEVE REQUIP CAN CAUSE WEIGHT GAIN defies belief. If he is prepared to put this in writing he deserves to be struck off. I live in UK where we have support networks including PD nurse specialists & for the most part the system works well. It seems to me that we have different approaches to life: I am a ‘glass half full’ person. If a situation arises that causes me discomfort &/or distress I try to find an alternative as best I can. I understand that with a consultant as ill-informed as yours appears to be that this could be a full-time occupation - but worth a shot surely - you owe yourself that? I am concerned about the use of the word ‘trial’. When I refer to a trial it is a clinical trial: you write of a ‘trial’ piece of equipment. Does this mean that the device was still being trialled or did you mean they were fitting in you as a trial to see if you could tolerate it?

You seem to be in a very bad place so I hope you will accept this post in the spirit of support it is intended. I always seem to see some light when I seek help here.

God bless.