Tarlov Cysts

Well,here I go again! Just this morning,for the first time while sitting in a cushioned chair,having a lovely and joyous conversation w/my sister,the weird leg thing happened! I see the Neuro soon,and will tell him about it as I logged it. I just dunno if it is from the cysts or is something else. It starts beside or below my tailbone,travels down both legs,into my feet. Sort of tingly,prickly,squeezing. Lasts about 30 to 60 seconds then is gone. I hadn't taken my meds yet,so I don't know if that was the cause. I just wish there was an easier way to get a diagnosis. I like to know what's goin on with my body. I did over do it the few days prior. Anyone else have weird butt/leg symptoms?

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Hi

These were some of the first symptoms I got when I found out I had TC's so I think it is fair to say they are the cause.

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Thanks Maggie,
I've read so much about them,but not alot did I see that mentioned. It's not sciatic pain,I've had that!
Have you been diagnosed,or had any type of treatment? Thanks again,I honestly thought I was losin my mind!

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Thanks Camilleberg, I have been to the site about the 2 day summit.
Personally,I feel it's time for one in the USA,since there is so few places to get a dx. My insurance would not cover out of state anything,and I don't have the funds for travel and surgery. I would just like to be able to treat the symptoms,learn some excersises that won't hurt me,and wait for better outcomes,or non invasive ones closer to home. I do thank you for all the links,I will check them out.

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yep, had those symptoms as well. non of it since I had the surgery. My insurance had a no out of state benifit clause as well, but after I sent a letter of necessity and the letters from the 2 top tc specialist here in the us. it went through without a hitch. They even paid all transportation, Lodging and meals. For myself I bought two plane tickets each way so I could lay down, They paid for that. So don't take no for an answer, talk to someone higher up and if you have no one in your state that can do it they have to provide medical care, wherever it is.
good luck

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I see the neurologist on Monday. I'll see what he has to say about this latest episode. Then,maybe it is time I send my info to the Drs here,just to get a dx,see if I am a candidate for surgery and go from there. I don't want to have to leave work permanently! I'm expecting my first grandchild in 4 months! I want to be active and healthy again! Thanks for the responses.
Everyone have a Happy and Healthy New Year!

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Hello TCblues,
I was following a thread a few weeks ago and I believe at that time you had contacted Dr. Warnke. Are you saying that you flew to Germany and had the surgery using Thecaloscope? And that you have had success with it? I would be interested to hear about your experiences. If not this forum, then by email is fine too. I sent an email to Dr. Warnke weeks ago, but have had no response. I am very curious how you went about getting the procedure, the procedure itself and the results! Thanks for sharing!

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I have issues with my back and legs also. I have a tarlov cyst in the sacral area of my back that i have received surgery for.

I some times experience the sensation of an electrical bolt shooting up the small of my back up terminating just below my ribs. A sharp pain in my buttocks and testicular region that lasts for only, and thankfully a few seconds. I also have a throbbing pain down my right thigh that dissipates around the knee cap but also have a feeling of loss of control occassionally in both legs, usually when i'm sitting down or lying down.

I used to have these pains before i recieved surgery but they seem to have gotten worse, more intense after surgery as though the palcement of the shunt that i have, or the surgery that i have recieved, has in some way interferred with the cyst or disturbed the nerve endings trapped in the cyst itself.

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No, I did not have the procedure in Germany. Or contact Dr Warnke, I was under the understanding that it was very new , only a few done on live patients ( we have to all have to be the firsts , so that was not a dig!! ) and that is was a treatment for arachnoiditis the other disease ( or syndrome, I don't want to start another debate with tarlovdisease.populus.ch/ as to how tarlov cysts aren't a disease?? ) has somehow been tied to tarlov cysts disease. I have never quite figured that out as, my very limited under standing is it is a sometimes extra bad thing that can go wrong with any failed back surgerys and epiderals, So i guess it get tied in on the europe forum because it can happen in the same dural space??? I don't know much about it but that everyone hopes not to have the body it happens too. CLaudine knows and can explain about that. She really is the one to ask other than that surgeon in Germany . but I didn't think that any strictly TC patients were going to Germany as it is not really a Tarlov Cyst Treatment?? For real , I could be wrong. That was my understanding of what I've read, The congress notes are a bit unclear where they are talking about TCs and where they are talking about arachnoiditis?? At any rate I only heard his name a few months ago. I haven't been around long ( a year) but I've read a lot of past posts ( years worth) and his name appeared around July? Regardless, it is great to have anyone new so interested and trying new treatments , after he gets a number of cases under his belt it could lead to a real boon for the future of Tarlov Patients in Europe, if it is a treatment for TCs , and eventually it will make it over here. The U.S. is backwards in a lot of ways healthcare wise, In my opinion having lived in a few countries. Hopefully that was PC correct enough ,
I am expressing my understanding, It is hard on this site to make any comment. My suggestions for safe, supportive talk are the 3 yahoo forums, if you live in the US. My apologies for such a disjoined message, I am tired of getting attacked so my hope is that no one is put on the defense.

However, There would have been no way my insurance would have paid for me to go overseas for a treatment , Maybe a five star general LOL, let alone with something so new. Plus most of us have time as the enemy the longer the body, brain and nerves are in this kind of pain and dysfunction is not good!! It is bad bad news in every manner. In my experience . Those getting treated early seem to be doing better in our little forum group.
I had my surgery done in Kansas City, I live on the east coast and saw the 2 specialists at Hopkins they sent me to the Dr in Kansas. I am very pleased with my progress so far, all internal bladder and bowel pain and disfunction are gone. Legs and hips fine. Some surgery site pain after standing for hours. I do have a few issues that will resolve with time , and have to do with having the nerves compressed for two years, not a side effect of surgery! I am so grateful , I seem to be doing on the slightly better side of average so far. I understand most surgery patients are not on the forums, they are living life. I have great faith that I too will get to return to the life I had pre TCs. A little wiser, much more compassionate, with a deeper meaning and quality of life. Nothing taken for granted ever again. After 2 years of constant pain, I have many days that are pretty darn good. And with luck and hard work on my part, it will be only getting better from here on.

My heart goes out to all that suffer, I can only offer my hope and experience as to what happened to me.
Hope that answers you questions, I hate writing on this site, because you can't say your own experience , please go to the forums for your information. There you will get everyone;s experiences both good and bad , most folks have stopped bothering to even check this site. this will likely be my last time, I just feel sorry for anyone who comes here and goes no farther with their research . My advice, go to the forums , foundation, reserach papers Newer ones , get an specialist opinion on your case, A TC Specialist not a Neurosurgeon, no matter how great he might be as NS. Talk to the guys on the list, including the Dr in Germany if you are interested in his new research. otherwise you are wasting your time, health and money.
Best of luck. You will get better!

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I had Tarlov Cysts surgery 4 weeks ago and trying to recover. Can someone tell me which three yahoo forum that I can check into? Thank you.

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I must say that i am intrigued by you're post camilleberg.

I have had most available procedures paracticed on the cyst that i have. From what i understand the cyst is quite large, 4 Inches in diameter, roughly the size of a small tangarine. I've seen it on CT/MRI scans but have not actually seen it via photographic evidence.

I was asked if I would give my concent to have a paper published on this cyst by the neurosurgical team at the hospital where i was operated on since they said that it was the larges and most aggressive cyst of that type that they had ever seen.

When the paper is published, i have requested a copy and will try to list all information on this site for other sufferers.

I wonder how successful Dr Warnke's procedure would be in this instance since i have not experienced any long term benefits of the surgery that i have received since the shunt was fitted and subsequently replaced?

what is the success rate of that procedure?

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I was wondering did you go out of state or out of the country, I am a Canadian and I was diagnosed shortly after having malignant melanoma 1V, there operated on my upper leg almost to the bone and they kept putting it down to post-op surgery, they did not listen it was the other leg then became both legs until they had me in the hospital where I was given too many drugs and was overdosing, they sent me to Barrie RV where my oncologist was and did another MRI because they did not follow up on the first one when I was in the hospital, anyways my oncologist diagnosed me. Perineural or Tarlov Cysts do not get the recognition diagnosis they say they are incidental cysts but they have no idea the pain they cause, the damage they do physically and mentally which of course is an impact on family and friends. I have had great suport from Reta at www.tarlovcystfoundation.org she answers or someone always answers questions even if we do not like the answer. What type of surgery did you have and was it successful.

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Einel, I am sorry for your ordeal. I do know that some Canadians have had the surgery done by Dr Feigenbaum, his office can probably help you with that, i believe if you search the forums you can find how they did it as well.
I had a long reply made and when I went to post it the forum had timed me out so my long letter was lost,
I grew up in western canada and have a favorite cousin in Barrie. Spent many summers there. Feel free to email me.

To Meiyong

yahoo TC forums for US/Canada

straight_talk_tarlov_cysts

Tarlovcystdiseasesurvival

Tarlov Talk

in my personal preference but you will get lots of support , answers and hope from all of them, A great groups of folks. Those on the first two have or are considering the surgery approach. So you can search and see people in all stages of recovery.
No questions are dumb, all aspects of this disease are covered.

I do consider my surgery , 4 1/2 months ago a success, I had a long post but you can read my story in the forums, my symptoms were severe, unrelenting mostly pelvic pain, internal and external, bladder and bowel pain and dysfunction. Could not sit, wear underwear or pants, work, have sex, was on heavy pain meds that barely touched the pain. I now have many great days and look forward to continued healing of the nerve damage from 19 months of severe nerve compression, one side of my sacrum was full of holes where the cysts ate it away.

My insurance has a no out of state benefits, after reviewing my case , seeing the recommendation of Dr Long, Kathuria at Hopkins ( local) and my MRI review by Dr Feigenbaum and tests done at Hopkins to prove the cysts were the problem, i have a perfect spine otherwise and no previous health issues at all. My surgery was approved without appeal, a first with this insurance. Everything, transportation, hotels for three weeks, meals , car rental, all was covered. That is the experience with most patients that I have heard. So do not be afraid to get a case manager and make your insurance pay to sent you where you need to go, there are only a few Neurosurgeons in the US that can do this surgery. Please do not let anyone unless they are one of these few touch you! My opinion from reading some real horror stories.

To set the record straight, in response to:

"results are first verified by an independant commitee, short middle and long term, on the contrary of what is made in USA where the success rates published are not verified. One can even claim 150% success rate."

I know for a fact that Dr Feigenbaums 3,6,9,12 and 24 months extensive followup questionaires are sent to a third ( NOT AFFILIATED) research company were that data and results are compiled and reviewed. Dr Feigenbaum is not involved in this at all, like is implied.
What he does do is followup with Post Op Patients at 3,6,9,12 and 24 months with reviewing the patients recovery at each stage, reviewing the MRI at each stage and then has a followup phone consult. His office is available for any post op concerns and questions the entire time. Considering the majority of his patients are out of state or country it is pretty amazing. This was my second surgery in my life. The other was a double hernia repair, from my occupation, and that surgeon was great but after a 4 wk followup that was the end of my relationship with her even though I had some post op issues, it was bye have a nice life... my swelling didn't go down for 8 months! Anyways, this isn't a ad for Dr Feigenbaum, I was just giving what happened with me, my personal experience only.

I am interested and excited for the European patients as it sounds like Dr Warnke is working on live patients now, I do wonder how restoring the CSF Flow would free the nerve roots from being compressed? Where so the nerves go? It sounded like his procedure doesn't touch the nerves, so how do they heal and regenerate
and heal if he hasn't touched them or the cysts that are still on top of the nerve roots? I guess i don't understand, regardless it isn't an option for the majority of US patients as our health care is directed by insurance companies. They are many good and honest doctors working here, the bad guys are the insurance companies. I can't image them sending any of us over to another country to try a new procedure with unknown long term success rates yet.
But you are very fortunate to have this doctor on the cause and trying something new. This is could be awesome news and if it works will hopefully make its way over here, until then most of us can't sit around for that magical day. Our livelihoods, emotional and physical health is dependant on getting treated yesterday !!

Is his procedure something that will be of benefit to you? I do hope so , I know that you still suffer a lot.

However I do have one request, Please do not constantly trash the US treatments and doctors and the tarlov foundation, you always seem to put a negative spin on everything in that regard. Regardless of what is being said. We do not trash what is happening over there and do look and listen with great interest as to any new treatments. I do wish for the very best for you and all who suffer with this disease. But I don't think it is helpful for your cause and more importantly for those looking for help , support and a direction to go. I did not see many success stories for the six months I was a member of the Europe forums, It was mostly just you putting out research, all of which is very informative on a host of topics, you have used your 82 year old friend often as a reason not to have surgery, if she is riding a bike at 82 after 20 years of having a TCyst obviously her symptoms were never as horrific as many TC patients are!! That women is very lucky and blessed that her TCs are situated in a place that hasn't caused her much issues. She is not the average symptomatic TC patient. We know that symptoms very greatly in their severity , but by the time someone is on a forum looking for answers things are getting pretty bad! It is great to bring her up when someone gets a MRI with cysts but they do not have symptoms then they can think maybe they will be a lucky one too!

I have seen many people not bother to even post and leave here because of the negativity, that happens if someone has a different opinion than yours. when that happens it hurts us all. I know that your heart is in the right place but I am really tired of all the backhanded comments. I hope you take what i ask with the respect I have for you and your knowledge, but for real enough with the unnecessary comments.
Respectfully yours
TCB

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How do we find out the outcome of the january meeting of docs?

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Hello TCBlues,

Your message states you had a tc surgery with Dr. Feigenbaum 4 months ago. It is good to hear that you are assuming your tc surgery a success but a public declaration of success after only 4 months is a bit premature and could be viewed as irresponsible. No disrespect intended but from what I understand, most neuros give a period of 1 and possibly 2 years before that determination.

Our tc problems are unique with no two patients having the exact same tc problems. What may work for 1 will probably not work for another. These forums are filled with tc patients desperately searching to be rid of their pain. To read of your premature success may steer a member to a disastrous surgical outcome. I wouldn't want that responsibility on my head and I'm sure you don't either. Give it at least a year before you make a strong successful statement. At that point, you will know for sure where you stand. For those of us having had a tc surgery, we understand that tc problems are usually ongoing even with the existing surgical techniques.

Unfortunately, the medical community is not advanced with our treatments..but, fortunately, new research and developments are happening for us around the world...as we speak. They are learning so much about our condition which can only help us. The information that Claudine provides is not to trash existing US techniques but to educate us on the new developments and research. It is only to our benefit to learn from this research and keep an open mind to new medical developments.

I, personally, do not see exciting new research as negativity at all. The existing surgical techniques have not proven to be 100% effective or anywhere near that. In the position we are in, we can't afford to stick our heads in the sand and not listen, read and learn.

I am also extremely tired of personal attacks on Claudine. Not only is her information vital and important but it is given with complete honesty, sincerity, kindness with absolutely no personal agenda attached. To consistently attack her information and methods is scandalous and just plain wrong! Health forums are not to bully members but to learn from. If I were Claudine, I would have already submitted complaints of bullying.

No disrespect to you or anyone else but it needs to stop and now!

Thanks for letting me speak my piece.

Jayne

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Hello Jayne.
As there is no report to sender, no private email,
I have been reporting Claudines posts in violation of guidelines for a month now, so feel free to report , if you see something I have posted wrong.
Please see the community guidelines:

http://www.inspire.com/about/guidelines/
I doubt anyone ever reads them but do if you find something I've posted in violation or an untruth

I would be thrilled to be booted, then I would not feel the obligation to be here to counter and balance a one person, one sided veiw of Tarlov Cysts , as I have an actual life again. I am giving back what was given to me by others. That was my understanding of a support forum.


I just questioned how Christines ' story is a poster picture for not having TC treatment, as then she says that this women is in constant severe pain, I didn't get how that was a success? and I have heard her use that example many times, this was the first time, I had to ask, I still don' 't understand.
Generally i could care less what is posted or a broken guideline except when it is a over the line. I was taught to say nothing is to endorse a falsehood.

I have been censored on tarlov talk and tarlov europe , any time I said something that didn't have the same view point as hers , Tarlov Europe and TT didn't even know who I was, because , at the same time I started receiving private posts from Claudine telling me I had AA, cauda equine syndrome, pudendal nerve entrapment and most likely a connective tissue disorder, all of which was news to me, I just showed up and explained my symptoms. now I was really scared.. in her words' i was the worst TC patient she had ever seen"

but thanks for your opinion, it leads me to think
haven't read my posts as you would see that I have never said anything like my recovery was done... I said at 4.5 months that I considered it a success,,, if you had read thread you would not have jumped on that, as it was explained as clear as a bell .

oddly..no one jumps up and down when Dr Warke's first US patient was stated a success at 5 days. ( promoting one doctor or procedure over and over again..is a violation as well as not the place for it. this isn't an advertisement or a magazine, but it sure reads like one and if I wasn't here .. would be theTC version of "O")
I am not an idiot, I have had this disease for 2 years, and with a family full of doctors we have done file cabinet full of research. to this and all the similar diagnosis's, likely to rival anyone's library. I do not post it on the internet, but will suggest an article if it would help a person's case or understanding. To post entire articles is a copyright infringement.

if I get nothing but 4.5 months of relief that will be a lifetime more than I had before, I hung on not to kill myself , just because of the chance at getting some relief through the surgery. To not speak of my recovery so far would be wrong. Do you think the newcomer wants to speak to someone like me? or someone who had the surgery 10 years ago when it was brand new. Both are valued information, but the answers to the questions asked are most likely to be most relavent from someone in my shoes or who had the surgery with the same surgeon within the past few years.? and as this is a US based forum , we need to watch other countries but realistically support the surgeons that are helping us here.

If I want to continue to talk about my experience here when someones asks a question that I have experience with, I will continue to do so, otherwise I become one of the people that just gets better and ignores this site and goes on with their lives, and then people can tell the lie that no one gets better. which is a number of people's agenda. The insinuations I've seen are quotes like " no one is 100% better.." draw your own conclusion,, a new comer does.... and its the wrong one..
Please do read the thread from the beginning, it's easy to see where things started going wrong.

And please jayne , post of your experience, how are you doing, what you did, did it help? what has helped you these are the questions that are helpful to the new person, please post your experience and ask Claudine to talk about how she gets through her day, what she does to help herself.. that is what people want.

I asked a simple request and it was not the first time, and not an unreasonable request. To stop wit the unapproved according to guidelines , political statements and digs . statements of agenda to organize for causes... statements of disrespect towards any medical doctors or assocaiations, that's all I asked and she and now you have flipped out.
This isnt the first time read posts like" Tarlov Again."

those things she can post away on her causes page or websites, but not here. I have asked nice so all i can do it continue to report any more violations or leave. Id be happy to do either.

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I do wish you and Camilleberg the best, as I 've said a hundred times but, as I look at your name link, you have been on this forum for 3 days now.? and can make such a comment?

.. please spend the weekend some time reading the post threads before you comment on what I have said.
I think that as a friend and fellow tarlov talk member you guys/girls should know what goes on here. As you are both representatives of your forum, one I sent people to as well. Not because I want to, but because it's the right thing to do , to give all sides and views.

So maybe you can advise, perhaps she doesn't understand how her comments read. I don't think
these comments would go unnoticed at Tarlov talk.

read all the tarlov threads here on inspire from this month to start
the comment that started this round , my asking to claudine to stop .. saying statements like.: On Side Effects of tarlov Cyst Surgery,

"We made an International Meeting July 2 and 3 in Chambery where 16 specialists attended from Europe, USA, South America. We invited all the specialists,

including Dr Murphy, Dr Long ( that was not free but his friend Dr Tarlov spoke for him) Dr Feigenbaum, ....and the foundation...Dr Murphy, Feigenbaum, the Foundation refused..as they consider they know all they have to know. They could have seen, as we did, the exclusive tool and the new findings from Germany and Japan. You can't forced somebody that does not want to learn or consider they have nothing to learn.."

that is where this started,

but as you have been here two days, Now you will hopefully know know why , I have what you call bullied your friend. I've asked to stop saying such things, that's it. If you read the threads you will understand .. this is not the first time ... such statements.. continues. I have no other issue with her, and think she does some amazing things for her cause, most notably Arachnoiditis, but that doesn't give her a free pass to do and say whatever she wants...this is not the way she posts on Tarlov Talk. and why she isn't allowed on the other two.
It is the way , things are posted on her Europe forum, much like a classroom, but that is her right as it's her creation and good for her. Claudine and Sharon seemed to be the most important patients advocates in Europe. and are no doubt saving lives.. Something I passionately do in my short TC history as well. But more importantly We are all the voices of TC and the louder the better.

please do freely comment after you have read all the threads posted this month. By both of us, but keeping the guidelines and posting rules in mind.

it is wonderful Claudine has such passionate friends, I admire your loyalty and courage sticking your neck out.

Do please stay on this forum! we need other voices. all experiences. If there was a private way on this forum to say these I would have done it and not broke up the forum. I think we are all here to help people, not dealing with this.

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OMG...This forum is to help each of us that suffers with Tc. Everyone has their own opinion and what works best for them. No one is right and no one is wrong. Information is power and that is what we are all seeking. Each of us has a responsiblity to help the other. I tell my sister-in-law about the courages woman I have met and how each of you are helping me deal with this crazy situation I find myself in. Please be supportive. We have to help each other because there just is not enough research on our problem to rely on just doctors. To those of you that I have spoken to on the phone and thru email - I want to extend a person "thank you" for all your help and support. I personally look forward to more information on this website from everyone so I can make a decision for myself on how to get some relief from the pain. Take care and we have stick together.

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Hello TCBlues,

I need to apologize to all members for this exchange so I will keep it short.

I am not "sticking my neck out for my friend" as you stated. I really have nothing and noone to fear and only state what I think and know.

Yes, I just entered this forum several days ago. Though I am new to this forum, I have been a tc patient and a member of most of the tc forums for the last 8 years. I do understand through personal experience the scope of our problems and the treatment of Claudine by certain members/forums.

Over the last 8 years, she has never stepped over the line with me with a personal diagnosis...AA, Cauda Equina, Pudendal Nerve Entrapment, Connective Tissue Disorder or anything else. What she has done, though, is most generously provided me with articles from verifiable medical specialists to help understand various different aspects/causes of tc/arachnoiditis and of the human body in general. I think you may have misunderstood. Her purpose is not to scare, diagnose or be negative but only to provide information through verifiable medical literature about our complex tc problem which affects all aspects of our bodies. It's called education.

If she has a motive...it is only for us to be cautious because of not only her 10 year tc battle but others as well. It's called education, empathy and compassion.

I've been asked by forum members, "If someone on the the forums knew of the risks, why weren't they addressed before surgery or at least notes of caution before proceeding?"...such as AA, loss of bowel and bladder issues, etc. We all need to know the pros and cons because of the complexity.

It does take courage to state less than popular facts..but not without personal harm, stress, added pain and possible public humiliation. If some don't want to read the information..there's always the Delete button.

And remember..writing in a 2nd language has to be hard.

That's all I have to say.

Take Care,
Jayne

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I have the same symptoms you are having. I find I am getting worse. I had two fibrin injections procedures in Canada by Dr. Kieran Murphy, I think they helped at first but he had bad news I have more. I have a MRI booked for April then I will send it to Dr. F in USA, so they pay for transportation etc. if you are Canadian?

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Hi einel, I don't know if they do. Sorry to hear you are not doing better. I myself just had to leave my job,as they couldn't hold it for me any longer. I am in pain,sad,angry,frustrated,beyond belief! I don't know where to go or what to do. Getting a dx shouldn't have to take so much time,money and effort!

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