At 2:30pm on November 20, 2009, Lizzy Holder said…
Hi Ellen,
Just thought I'd expand my horizons beyond yahoo. Beka has some good sites ere, and I just read and read. Nice to be in such a big group. Was thinking of starting a chat group for the holidays, they sometimes aren't so hot. Any help you can do with that would be great. Seems nobody has chat rooms anymore. Found one at bravenet.com, but can't make it work right.
Take care,
Lizzy
At 2:00am on November 20, 2009, Lizzy Holder said…
Thanks Ellen for the welcome. Yes, we do run into each other at other sites. Do you twitter?
Lizabeth
I have now been to 4 different surgeons, none have ever seen the damage that has been done to my left foot. When normal feet are flat they have no curve in their metatarsal area. Due to mine I now have an 1 1/2 inch shift in the bones in there. No regular shoes fit. I mainly wear danskin slippers at home. One doctor went so far as to tell me to wear nothing at all times. Mine are so bad that I can be walking at home on the flat floor and snap a bone. Ouch. My ways for handling pain is rest, ice, heat and ibuprofen. When that fails I try opiate pain pills, but hate the way my mind feels like it is stuffed full of cotton. Mainly I just restrict what I do which makes me very cranky. Most of the time I grin and bear it. My last foray into to much ibuprofen, left me with a perforated ulcer, and almost death. So now I am very very careful about who and what I take. It wasn't just ibuprofen but it was a great influence.
Hi Ellen S. My name is Terrie and I was born with flat arches which appartently started my problems but I grew up on a huge fram with lots of cows and horses. I was an only girl out of four kids and worked very hard trying to keep up with all the chores. Due to over work and poor medical attention to both of my feet I developed open metatarsal fractures on both feet that are so out of whack that the only recourse now is to go in and rebuild both feet. My only problem is the surgeons can't promise that they will be any better than they are now, nor can they also say that they will not go right back to being the way they are. I suffer from RLS plus the nerves in my toes are also misfiring so I have alot of problems sleeping at night. I have in voluntarily kicked my partner many times. I live with chronic pain day in and day out but hate to take pills just to mask my symptoms. The surgeons have offered to sever the nerves in my feet but only on one side of each toe. I would rather feel my pain and know my limits rather than partially feel nothing.
Dear Ellen,How are you? Are those new Docs working with you and trying to really make an improvement? You stated you may be poss.hospitalized in near future,sure pray everything will work out for the better. Thankgoodness for your husband @ your side. You are there watching over all of us,stay strong Ellen. Will be thinking of you and your husband.
i wish i could find help. i have mental problems. i was told when i was young i had bi-polar and fetal alcohol syndrome. and i think i have more mood swings than anything. how can i change that? one moment i am happy, next moment i am like a demon out for revenge. HELP!!!
Ellen I have had sub clinical hypothyroid during pregnancy.
later on my tsh had been up and then down and they continue to dro pby themselves without medication.
I really appreciate your tips on the type of tests that i should consider getting done :)
I wish to help others if they have had similar situations
Dear Ellen,E-mailed you so late,did not answer your question. DNA test came back,mutation of TH gene,variant unknown,Dopa Responsive Dystonia.Have Gen.Dystonia with some s/s of Parkinson's which has responded wonderfully to Sinement,but within 2 yrs dose has been steadly increased to get relief.Take !,000mg.of SinementCR @ this time. Dr. said I am @ my limit. Also what complicates this have some hx of phenothiozine use,Migraines,Nand V, also depression on and off through life using all ssr'is ect. So,many medicationsplus,undiagnosed DRD which ultimately left me with some brain damage. I just turned 53. Afraid I am headed in downward spiral. Hope they can figure this out in time before they lose who I am. So afraid of losing my memory and capabilities of taking care of myself. Response of medical personal to impersonal and ineffective and so afraid of Medical Mistakes being made in consequence.
and you are so lucky to own arabians! Where do you live? Have you ever been to the Spanish Riding School in Vienna? My sister in law went recently and said it was amazing, I've seen plenty of displays with Lipizzaners but would love to see them at the SRS, pure magic!
Dear Ellen,Thanks for your concern. k does help without it couldn't get off floor. Had another rough day but remain @ home. Close call though,V.S.got a little too high for a while,with neuro s/s,scary.Called GYN who had lab results from Thurs day before last ER visit. They would not give me info,stated GYN will call Neuro with lab results personally before Mon. afternoon evaluation. When we talked last she was concerned about poss. Diabetes Insipidus due to depletion of ADH which is released by Pituitary Gland. Could be caused by brain trauma,seizures ect. Could also be caused by kidney damage but chances are my brain. This causes electrolyte imbalances,exteme thirst and polyuria. So without knowing labwork,this is becoming complicated. I increased Na intake today to see if that would help,maybe it did. I keep tube clamped now and release every 4 hours. If left open to drain ,urine never stops. Can't wear leg bag to dangerous. This seems to help keep me out of ER@ least for now. I wonder if Neuro will admit me downtown for testing. Will let you know . Hope you are stable,take care of yourself Ellen,Kathy
Hi Ellen
I am back on twitter and added you. I was kicked off for 30 days in all due to a Hugh misunderstanding regarding my name "anointed" someone else had that name so I spelled it incorrectly on purpose. Well, apparently the real "annointed"
was being bad and mischievous but they nailed me. I tried to reapply using another name etc and they said I committed a rule violation. geesh I could not win...so I waited it out. My new name is "chickiesplay"
Hi Ellen
Thank you for your message. I have cervical dystonia so that is my main area of interest. I follow the threads and post from time to time, but I also run a dystonia support group in the UK so I am always interested in new information about dystonia.
I used to ride a lot and did the odd dressage competition. Sadly my dystonia & arthritis stop me from riding much these days, but I do occasionally ride beautifully schooled Lusitano horses at a yard near me who specialise in classical equitation (dressage to you and me!).
Best wishes
Sarah
At 11:18am on September 25, 2009, TENA/DIAMOND said…
THANK YOU SWEETIE FOR BEING SUCH A FANTASTIC FRIEND. I AM NOT SURE IF I AM BLOGGING RIGHT BUT I HOPE I AM DOING IT OK. LIKE I SAID, I DECIDED TO DO IT THIS WAY INSTEAD OF A GROUP. DON'T KNOW HOW TO DO THE GROUP ASPECT. HMMMM
Ellen
Thank you for your welcome message. I have been interested in starting a dystonia support group in my area. How would I go about doing that? I thought about putting a notice in the local paper and posting flyers in doctors offices. Should I start a website or blog site? I am concerned about putting my personal info out there to begin with. I have facebook. But i would like to all people and some may not have computers etc.
I have noticed that so many of us that have dystonia have also been told it is psychogenic. It is one of the most frustrating things to have to live with this dibilitating condition then have people tell you it is in your head and with psychotherapy eventually you should get better. Then you get labeled. It is in your medical records and it seems that is the only thing people see when they look at them. I could keep going but my hand is starting to cramp up. Glad to find another great site to find otheres going through the same that I am.
Kim
Dear Ellen,Thanks for concern and prayers,just read e-mails.Stable somewhat @ this moment thanks to Ativan.Been experiencing Dystonic reactions daily some progressing into storms,transf.via911 to closest hosp,they have never exp. pt wth dystonia. I live in fear because they have not found out what is aggravating or inflaming neuro cond. This hosp.not qualified to take care of me and I am very concerned I will not make it out alive from ER.Last transfer I begged EMStechs not to leave me alone, last ER visit took 3 hrs of vomiting and seizures before given IV with muscle relaxant and Zofran. Said I had to wait my turn as dystonia and a migraine escalated along with horrible bladder and intest. spasms. Skin turgor was bad before I went in,Potassium was low.Pain level 10,I was emotionally scarred. So,going back to ER, I thought was surely a death sentence for someone advancing in full storm with no way to communicate. Every limb locked in contraction,I was very SOB,B/P and pulse very high,could feel heart flutter slightly. Med.Person. @ my side tried to loosen contrac of arms for V.S. ect and she couldn't understand why I wouldn,t relax.I waited to hear for snap of my bones @ any time. They still took so long to respond. They had all info from purse,and from EMS.I didn't want to die while they looked up DRD, Dystonic Storms ect.Finally given Ativan in IV which was inserted earlier in ambulance.I bloomed like a flower,petal by petal,could even talk,but headache remained due to pos and cerv disc dis..I could remember them giving me a CAT scan of the brain to check for bleed. chest x-ray to rule out heart enlargement,pneumonia ect.why? I have Dystonia,what's that? Potassium low again. They sent me home once again,on Potassium supp and Norvasc. PCP called in,said she would talk to neuro, and have Nursing Home care started. Suprapubic tube put in bladder when interstim device set off dystonic reactions. Dx with overflow incontin.neurogenic bladder. I feel the tube is irritating bladder,in response have some form of autonomic dysautonomia. Have been clamping tube most of day and output more near norm,but still irritating enough to set off dystonic reactions. Energy level improving, but temp stll a little elev. Still exp.aura of moldy smell,before seizures start. Starts in mouth,droops,numb,lft side.tongue numbpulled lft and up,then eyes bilat,dystonia then usually s.o.b. inspir.,lips cyanotic,heart,pulse rate up and @ times will skip beats.then waves of bladder spasms and intestinal. If attatched to bag will have copius amounts of output.Then back to eyes ,usually lft side numb,down to toe. This morning lasted 2hours no breaks. I just want to be neurologicaly the same as I was before surgery. Have lost weight even though eating and not moving.Hope neuro removes tube but then still must find ulternative for drning remaining urine. With dystonia in hands self-cath bad choice. What next? Will find out when I get to see neuro but have to remain stable and out of hospital near home. Ellen ,did your new Drs. come up with anything to help?How are you feeling? Hope OK,Kathleen
HI!! Thank you for finding me...I've been in bed since Sunday with a terrible, terrible migraine. When I get up I feel like I'm going to throw up. I've been having these for a few years now. I took topomax for a few months to try to prevent them and that was awful...wouldn't recommend that to anyone!! I've simply got to go back to work tomorrow...secretary in university music office, but with my eyes feeling like they are, I don't know how. I look forward to hearing from others and how they are managing/coping with theirs. Syl
I've been having episodes of transient aphasia and other neurological symptoms for over three years now. The frequency and unpredictability of these spells have caused me to lose my job and eventually I had to file for disability.They have done every test imaginable and ruled out everything else possible. When the neurologist was done with the tests he said they all the results came back normal and there was little more that can be done for me. I then asked what could be causing my speech problems. His response was possibly migraine phenomena. So I started looking into it and found that a lot of my symptoms could very well be part of what you call an aura. I plan to take this to another neurologist who knows a little more about the subject.
Thanks for info. Thought that @first,but reactions increased with level of setting of stimulator. Been off for 4hrs dystonia in face much improved. Bladder returning back to constant contracting with intense urge to void. Never completely empties which leads to infections,which complicates Dystonia. Will be unable to selfcath due to dystonia in hands. Noted in literature M.S. pts.not compatable with device,had wondered about dystonia. As for Rx given in the OR I was told I was given Twilight sedation,no general was the decision. Had no complic.after surg.to warrent added meds but I will ask. In ER because of severe Dystonia they gave me benedryl ivpush,held off for a while then gave me ativan iv . Was given dose of Klonopin before discharge next afternoon.Met with Medtronic grp and Uro. decided to try again @ very low setting for a few days. Fine for about 4 hours,then I really started to smile,just like the Joker. Called Dr. will not fool around any longer, scares him. Once dystonia activated it is set off. Has a mind of it's own . Fortunately took half a Klonopin,relaxed,slowly calmed. Still feel a little residual but nothing like the other night. My sister inlaw who is a psychologist has never seen a violent Dystonic Reaction. To her she related it to C.Palsy like symptoms along with totally concious siezures. Freaked her out,maybe get a little empathy from some family members around here. Feel totally alone. @ least I know I'm not, with all the fellow dystonians suffering throughout the world. You stay well.
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Just thought I'd expand my horizons beyond yahoo. Beka has some good sites ere, and I just read and read. Nice to be in such a big group. Was thinking of starting a chat group for the holidays, they sometimes aren't so hot. Any help you can do with that would be great. Seems nobody has chat rooms anymore. Found one at bravenet.com, but can't make it work right.
Take care,
Lizzy
Lizabeth
Big Hug Barbara
later on my tsh had been up and then down and they continue to dro pby themselves without medication.
I really appreciate your tips on the type of tests that i should consider getting done :)
I wish to help others if they have had similar situations
I am back on twitter and added you. I was kicked off for 30 days in all due to a Hugh misunderstanding regarding my name "anointed" someone else had that name so I spelled it incorrectly on purpose. Well, apparently the real "annointed"
was being bad and mischievous but they nailed me. I tried to reapply using another name etc and they said I committed a rule violation. geesh I could not win...so I waited it out. My new name is "chickiesplay"
Thank you for your message. I have cervical dystonia so that is my main area of interest. I follow the threads and post from time to time, but I also run a dystonia support group in the UK so I am always interested in new information about dystonia.
I used to ride a lot and did the odd dressage competition. Sadly my dystonia & arthritis stop me from riding much these days, but I do occasionally ride beautifully schooled Lusitano horses at a yard near me who specialise in classical equitation (dressage to you and me!).
Best wishes
Sarah
YOURS DEARLY
TENA/DIAMOND
Thank you for your welcome message. I have been interested in starting a dystonia support group in my area. How would I go about doing that? I thought about putting a notice in the local paper and posting flyers in doctors offices. Should I start a website or blog site? I am concerned about putting my personal info out there to begin with. I have facebook. But i would like to all people and some may not have computers etc.
I have noticed that so many of us that have dystonia have also been told it is psychogenic. It is one of the most frustrating things to have to live with this dibilitating condition then have people tell you it is in your head and with psychotherapy eventually you should get better. Then you get labeled. It is in your medical records and it seems that is the only thing people see when they look at them. I could keep going but my hand is starting to cramp up. Glad to find another great site to find otheres going through the same that I am.
Kim
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