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Medullary Sponge Kidney Disease (MSK) Community
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Avatar universal

Canadians?

Hello, everyone.  I have been reading some of the posts on here and I am amazed at how each of you explain exactly how I feel every day.  Just a quick question-are there any Candians on here?  I am having great difficulties trying to find doctors (Nephrologists, Urologists, ER doctos, GP's) that understand this disease, so if there is anyone in Canada, please let me know.  Thanks!
9 Responses
Avatar universal
hi toomanystones
im canadian but im also having a hard time finding a doctor to help im still on the waiting list to see a urologist i have till the end of jan so as it goes i see my regular doctor she doesnt know much about our condition but she has been a little help and working with me with the research i bring to her. im still new to this but ive managed to keep down the daily pain of my kidneys by taking blood pressure med as for stones ive only past four so far since june.
im sorry i couldnt be more help but most of us have trouble finding a doctor that knows or believes what we are going threw all i can say is do your research and talk to alot of us and i hope u will find something that will help
Avatar universal
Thanks Jess601.  I actually called Dr, Wolf from the University of Michigan as he performs a surgery that lasers the calcifications in the kidneys which is not s cure, but is supposed to be a treatment to reduce the number of stones passed, reduce the amount of flank pain due to the MSK, and hopeully will also help with the UTI's.  I have passed 6 stones in the last 2 weeks, and when I am not passing stones, I am in great discomfort in my kidneys, and the UTI just does not seem to get better with antibiotics, so my bladder feels like it's going to expolde, and it feels like there are tiny shards of glass in my urethra.  I have been reseaching MSK for quite a while now, and I have spoken with a few doctors that at least ackowledge that MSK patients can have flank pain even when a stone is not passing, but they all say that nothing can be done.  I sent all of my records to Dr. Wolf and they are supposed to arrange an appointment for me.  Obviously the main issue is that it is in Michigan so OHIP will not cover it.  I have an amazing support system and my family and friends have said that we will figure out how to pay for the surgery (I am very lucky to have such an amazing support system.)  I will keep looking for a Urologist in Canada that performs this surgery but I have not had luck yet, and I don't know how much longer I can continue being in this much pain.  I have 2 small kids, and a full time job, and I feel like I have missed so much over the past year due to MSK.  This surgery may only help reduce the pain for 2 years, but at this point I would be happy to have 2 weeks of not being in pain.  Can I ask where abouts in Canada you live?  
489228 tn?1291535054
When I had the procedure done by Dr. Wolf in 08' there as another patient from Canada that wanted it done but could not come to Michigan.  At the time
Dr. Wolf gave me the name of another doctor in Michigan.  I have looked and looked for that e-mail but have found nothing yet.  However, if you are in touch with him ask.  I was told the doctor in Canada interned with Dr. Wolf himself.

Good luck his procedure changed my life, but we also did mega antibiotic treatment when I got home too!  Keep us posted
and take care of yourself, give your body time to heal post op, don't push it!

If you have any ?? just let me know!

Shelly
Avatar universal
hi toomanystones
i totally feel ur pain and frustration i know about the proceedure shelly has given me a lot of information to help me with my doctor they tried telling me that i should have no pain since my stones were no longer on the move so out of anger i finally said that was ****, so she got me to try the blood pressure meds as a told u before and it has help i still have some pain but im up and out of bed which to me at this point is awesome compared to before because i was getting really depressed. i aswell have two kids they are 6 and 3 so as u know it is hard to not be there for them.on top of the msk i have to 2 other problems such as pelvic congestion syndrome and ic(painful bladder)
im real glad u have al the support you need and i hpe u find a way to get there or find a doctor that will do it in canada ive learned that this is really a fight to get a doctor to listen or even to something.
oh and i live in alberta where about are you?
Avatar universal
You are correct-it is a constant battle to have doctors listen or believe we have chronic pain.  I live just outside Toronto Ontario.  My GP has referred me to a Urologist in Toronto, so I will see if he can do the procedure.  If not, I may have to go to Dr. Wolf and pay, as I can not keep going like this.  My GP also started me on blood pressure pills today so hoepully that will help as well.  
Avatar universal
Hi folks,

I'm a MSK patient in Ottawa, Canada. I was diagnosed ten years ago and have had over 20 stones to date. The biggest issue is getting doctors that understand that you can have pain in your kidneys without having stones and that you can have Biofilm infections without showing positive on the tests.

Finding the right doctor is really hard. I had one Urologist that told me it was impossible to have pain when the stone was in the kidney and not blocking anything. Luckily I decided to shop around for another doctor. Luck for me I ended up with Dr. Christine Hill, she understood me completely she put me on beer once a week(seriously!) and a low dose of Trimethoprime to prevent infection. Unfortunately she passed away.

But I have found a great urologist at the Ottawa Hospital Dr. Oake, great bedside manner and seems to really understand my issues. He doesn't like the preventive antibiotic but he does understand the Medullary Sponge Kidney.

So I have been sick for almost a year this time. It started last November with urinary infections and 5 stones in left kidney and 1 in the right. I was in and out of the ER and hospital for 3 months, I begged them to operate as I know from experience that as soon as they do clean our the kidney I'm fine.

Finally I got to see Dr Oake, he wanted me to try Lithotripsy, I did that in Feb, I did get some relief but a week later I ended back up in the ER with an obstruction from one of the remaining fragments. They finally operated at that time and cleaned out the kidney.

I was pain free for 3 months. Feeling great.

Then I started with UIT symptoms again and then exhaustion pressure in the kidney, pain etc... Dr Oake thinks they need to inject dye into the kidneys while I'm asleep and laser any fragments they see. He said that for some reason middle aged women are very sensitive to any foreign objects being in their kidneys.

So right now I am waiting for surgery which just got bumped until October 22nd. I had to go into the ER last week and they saw that a 6mm stone had formed as well as a bunch of small ones. I'm at the point where I can't do anything around the house, drive or even walk now without pain. So I can definitely relate to how depressing it can me.

I too have hight blood pressure which seems to be common to a lot of MSK patients. One other thing I thought I would add just as an observation. Motion like driving in a car, train etc... seems to irritate my kidneys. I always take antibiotics with me on trips.

So just in case this helps anyone else here is what works for me.
Vitamin D 1000 mg helps to dissolve the stones I believe
Urocit-K I went 3 years stone free when I was taking it.
Ducusate Sodium - the pain meds constipate
Ondanseton when I have bad nausea
Novo-Cycloprine muscle relaxer works well with Hydromorphine for bad pain
Flomax to help them pass easier
Hydromorphine, 1mg for pain (the most I take is 4mg /4 hrs)

When I go into the ER they always give me Toradol for inflammation. I does seem to help with the pain.

When I'm bad I can't stand to have any pressure against my kidney. I find a heating pad helps as does sitting with pillow behind me.  Also sleeping on my side, and putting a pillow behind me so I can't roll on to my back.

Does anyone have any experience with the type of surgery I will be having (dye and laser)?

Avatar universal
Hi folks,

Just in case this helps anyone else I contacted the Canadian Medical Association to ask if they knew of any specialists in Canada that might have MSK experience. They told me each province is in charge of it's own doctors. So this is a list of all the provincial licensing bodies.

For those of you in Ontario this is the url to search  the College of Physicians and Surgeons of Ontario database.

http://www.cpso.on.ca/docsearch/default.aspx?id=2048

PROVINCIAL/TERRITORIAL LICENSING BODIES

Yukon
Dept. of Consumer & Corporate Affairs
Government of the Yukon
P.O. Box 2703
Whitehorse, YT Y1A 2C6 (867) 667-5811
FAX (867) 667-3609

NWT
Professional Licensing, Dept. of Justice & Public Service,
Gov't. of NWT
P.O. Box 1320
Yellowknife, NT X1A 2L9 (867) 920-8058
FAX (867) 873-0272

BC
College of Physicians & Surgeons of BC
400 - 858 Beatty Street
Vancouver, BC V6B 1C1
Phone: (604) 733-7758 
Fax: (604) 733-3503 
Toll free: 1-800-461-3008
www.cpsbc.bc.ca

Alberta
College of Physicians and Surgeons of
Alberta
900 Manulife Place, 10180-101 Street
Edmonton, AB T5J 4P8 (780) 4234764
FAX (780) 420-0651
www.cpsa.ab.ca  
  
Saskatchewan
College of Physicians and Surgeons of
  Saskatchewan
211 Fourth Avenue South
Saskatoon, SK S7K 1N1 (306) 2447355    
FAX (306) 244-0090

Manitoba
College of Physicians and Surgeons
  of Manitoba                    
494 St. James Street
Winnipeg, MB R3G 3J4 (204) 774-4344
FAX  (204) 774-0750
www.umanitoba.ca/colleges/cps

Ontario
College of Physicians and Surgeons
   of Ontario                    
80 College Street                
Toronto, ON M5G 2E2 (416) 9611711
FAX (416) 961-3330
www.cpso.on.ca

Québec
Collège des médecins du Québec                2170, boul. René-Lévesque Ouest
Montréal (Québec)  H3H 2T8  (514) 933-4441       FAX (514) 933-3112
1-888-633-3246
www.cmq.org
***@****


New Brunswick
College of Physicians and Surgeons of
  New Brunswick
1 Hampton Rd., P.O. Sack 628
Rothesay, NB E2E 5K8 (506) 849-5050
FAX (506) 849-5069
www.cpsnb.org

Nova Scotia
College of Physicians and Surgeons of
Nova Scotia
5248 Morris Street
Halifax, NS B3J 1B4 (902) 422-5823
FAX (902) 422-5035

Prince Edward Island
College of Physicians and Surgeons of
  Prince Edward Island
199 Grafton Street
Charlottetown, PE C1A 1L2
(902) 566-3861
FAX (902) 566-3861

Newfoundland
Newfoundland Medical Board
139 Water St., St. John's, NF A1C 1B2
(709) 726-8546
FAX (709) 726-4725
Avatar universal
Hello,

I continue to read the posts on this site, and I can not believe how well everyone describes how I feel on a daily basis.  I too find it difficult to drive sometimes for the pain in my lower back.  I have 2 small children, and I get down on teh floor to play with them , and if one of them goes behind me I freeze up thinking that if one of them even touches my lower back I will be in enormous pain.  I have a few good days, but those good days I am usually so tired from always being in pain, and I try to get things done that i can't do when I'm in pain.  I am getting so depressed all of the time.  I am just so tired of being in pain, and I am so tired of ttrying to explain to people why I am in pain.  

I have an appontment with another Urologist in Toronro in October, and I am now going to find someone to do surgery on my kidneys.  I also have an appointment with Dr. Wolf in Michigan and if I can nto find anyone in Canada to do this surgery then I will pay whatever I have to and get it done in the US.  I can not stand being on pain meds all the time, but when I am not on them I am in too much pain to focus on anything.  I continue to tell my family that I am okay, but I am not okay.  I am not strong enough for this.  I just want to be there for my kids, and I enjoy them so much, but I get so frustrated that I always feel like crap.

I just can not believe that this is it-we just have to put up with the pain because docors say we "shouldn't" be in pain?  I have always had such a great outlook on life, and I know that people are worse off than me, but I just can't keep doing this-in and out of Emergency room's and clinics, and doctor's offices, and it's the same thing every time.  There just has to be another answer to all of this???  
489228 tn?1291535054
Wow, my updates have not been coming to my e-mail and was just answering your pm and found your post and these responses.  I will try to get the doctor's e-mail address etc.that can do the procedure in canada,. I did e-mail the other patient but it got returned.  I will keep trying
So glad you too at least connected.

Hi Silvia and I really look forward to speaking with you.  Sounds like are info and research parallels and I am so thankful for you meds etc. list.  It is only together we are going to make
a difference with MSK.  I noticed your on the UROCIT-K.  I was for a long time but went off
over concerns that it increased my chronic or biofilm infection issues.  I even was to be a part of the research study in TX with the hospital that created it and they dropped me since they
were concerned about the chronic uti issues.  I know on the insert UROCIT-K states not to take it with an infections since it raises your pH levels which create a better enviroment for most bacteria though some do not like alkaline urine either.  I would be curious about your thoughts or personal experiece with this since, the UROCIT-K is a great med if we can take it>
Shelly
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