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28-year-old Danish male needing help

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Unread 12-04-2012, 03:03 PM   #1
Rune
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Default 28-year-old Danish male needing help

Hello. What a nice forum! I have already read some posts, and you guys seem pretty knowledgeable. I would sincerely appreciate if you could help me.

Truth is I do not 100% know that I have a neuropathy as I have no diagnosis yet, but I have so many symptoms that I'm quite convinced. I am writing to you because I seriously consider going to Mayo Clinic and getting diagnosed. Two years visiting numerous Danish (and a german) hospitals, and no plausible diagnosis, makes me kind of frustrated. My right foot and calf burns, sometimes electric pain, burning pain, like knives in my feet etc. The left leg is ok. The result is that I use a wheelchair and are seriously disabled. My arms and hands hurt to a lesser degree, so I use a secretary for helping me write me master thesis. Can you help me:

Is Mayo Clininc Minnesota a good place in order to be diagnosed for having or not having a neopathy? How expensive is a visit, I mean what kind of price range for a non-insured person?
Also, what kind of supplements would be wise to take for me?

Here is my story, and current medication+supplements:
For several years I have had problems with using a computer due to pain in my hands and arms. I visited several experts, and one sent me to a gym in order to strengthen my muscles in January 2011. Apparently something went wrong when I lifted weights with my legs, for I started experiencing severe pain in my right knee afterwards. Whenever I used my leg the pain increased afterwards, preventing me from sleeping and eventually forcing me to move back to my parents’ home, and into using a wheelchair. The situation gradually worsened, and in July 2011 an arthroscopy was performed, where they removed some irritated synovialis (latin name) inside me right knee. Unfortunately the situation did not improve, but the pain changed from being in the right knee to the right calf and foot. I was hospitalized at the Department of Apoplexy at Amager Hospital, Denmark, in August 2011. I received a lot of medication and for a short period my situation improved and I could use crutches, but no lasting effect. I went then to one of the most famous physiotherapist in Denmark, John Verner, at the private hospital of Parken. John Verner told me that he thought something went wrong during the arthroscopy, perhaps due to that I was in complete anesthesia, and that my autonomous nerve system was malfunctioning. At this time my right foot had a red discoloring and the right leg was colder than the left one. John Verner gave me some exercises to help the autonomous nerve system, but they only worked for a short period. At January 2012 I had been using a wheelchair for months, and the pain was so intense that I often could not sleep at all. In desperation I went to a small private hospital in Germany, Beta Klinik at Bonn in order to check for nerve damage. They performed six MRI scans of my right leg, calf, right knee, right thigh, back and head. None of the tests showed anything except that there was signs of that the arthroscopy had been “invasive” (their philosophy is minimally invasive procedures, so they noticed this). They also took blood samples, a muscle biopsy and a skin biopsy, the two latter both in my right calf. They explained to me that they thought I had the following diagnosis: A myopathy, a disease in the small blood vessels and Ehlers Danlos syndrome. The biopsies were sent to the Neuropathological Institute at the public University Clinic of Aachen, Germany. The results from Aachen showed signs of both a myopathy and Ehlers Danlos Syndrome. However, the doctors at the department of Neurology Rigshospitalet, Denmark, did not believe this and made their own muscle biopsy, which did not confirm the diagnosis. They gave me the diagnosis “dissociative disorder” in March 2012. Due to the final immunhistochemical test from Aachen in May 2012, the doctors at Beta Klinik withdrew the myopathy diagnosis.
In the period December 2011 to June 2012 I had occasional meetings with the psychiatrist Gerd Olesen at center of Psychiatry, Amager, Denmark. She did not find that I showed any symptoms suggestive of psychiatric disorder, but the neurologists do not believe her.
In August 2012 I was sent to the Center of Rare Handicaps, at Rigshospitalet, Denmark, in order to be tested for Ehlers Danloss Syndsrome. The doctor Christina Dali told me she did not think I suffered from Ehlers Danloss Syndrome, a new skin biopsy showed that she was right. She thought, however, that I had some symptoms indicative of small fiber neuropathy. She ordered an electromyography, but Professor John Vissing from the Neuromuscular Research Department at Rigshospitalet told me this was absurd as EMG cannot test for small fiber neuropathy. I have only spoken with him at the phone, and we have a meeting scheduled the 15th of January 2013. He is the top neurologist in Denmark.
To be honest I am exhausted of the long waiting periods in the Danish medical system, periods which are followed by diagnoses like “dissociative disorder”. I have heard that Mayo Clinic is one of the best hospitals in the world, which is why I consider visiting them.
I have the following symptoms: dry mouth, sweaty hands, diarrhea like stomach, red discoloring of right foot, colder temperature in the right leg compared to the left, and exercise related pain in my forearms and hands. The main problem is the pain in my right foot and calf. It can best be described as burning, prickling, throbbing, and it is so severe that I dare not stand on my right leg, which is why I use a wheelchair. I used to do a lot of sports, swimming, salsa dancing, walking long walks, and yoga, but now I practically do not use my body at all (I can use my whole body, the problem is the pain when I do it). This is naturally very frustrating for me, and I have tried numerous ways to overcome this, with no long lasting success. I am finishing my master thesis December 2012, and it is going to be great, so it is not like I have given up. However, I need help to stop the pain spirals if it is possible.
I currently use the following medication: duloxetene 50 mg, pregabalin 450 mg, imoclone 7,5 mg, circadine 2 mg. If I do not use medication I would be unable to sleep, as the pain in the right leg is most intense in the evening, and during the night. For a month I have used used B-12 Thorne at 3mg + 1200 folic acid vitamin. I have also started using the American vitamin product Neuropathy Support Formula, which contains large doses of B1 & B12 vitamins among other things. I have read recently read about the limitations of this product.
I saw at Mayo Clinic’s website that “burning feet” could be related to “complex regional pain syndrome” . I think this is what John Verner meant, but the doctors at Rigshospitalet did not think highly of a physiotherapist so there was no follow-up when John Verner’s exercises did not work. I imagine something could have happened during the arthroscopy in my knee 2011 that triggered the symptoms in my right leg.
I might have been more susceptible to this as my body had always been a bit fragile, like the long term pain problems in my arms speak of. I also had back problems so I could not carry backpacks during day-long trecks in Sweeden 2011. I think I might suffer from small fiber neuropathy, which was worsened by the operation.
I would like to be tested for small fiber neuropathy / complex regional pain syndrome, and if the test is positive, I would like help to get treatment.

Again: What kind of supplements could I use in the meantime? Is Mayo Clinic a good place to visit? What kind of price range for a visit?

Best regards

Rune


PS: I saw you asked new users to describe their situation in details, so I did my best. I apologise if this is too long. : )
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Unread 12-04-2012, 03:21 PM   #2
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Welcome to Neurotalk:

Long posts are okay. But I have some further questions.

Does anyone in your family have Ehlers? Anyone in your family with neuropathy?

CRPS (also called RSD) follows a trauma usually. We have a forum for it also and you can ask questions there too.

Were you using any drugs before this happened? Anything? Antibiotics? What were you doing when the pain started?
Athletics? trauma, accident? Vaccines, illnesses?
Were you exposed to solvents, chemicals, pesticides?

Have you been tested for heavy metals? Did you ever have B12 tested before you started it, to see if you were low?
If you are taking B12 now, you need to take it on an empty stomach.

Mayo has not been great for PNers over the years. The RSD (CRPS) is another matter. I am sure others here will chime in with doctor suggestions that they know are good. Discoloration is suggestive of CRPS.... intolerance to ice packs or cold also suggestive. CRPS patients like warmth and heat on their painful
areas.

This is our RSD forum:
http://neurotalk.psychcentral.com/forum21.html

They have an introduction thread here:
http://neurotalk.psychcentral.com/thread10725.html
You might want to post on this intro thread also so that the experienced RSDers can comment and give you ideas.
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Unread 12-04-2012, 04:54 PM   #3
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The Mayo Clinic in Rochester, MN should be a very good place to go. I do not know what their charges are with or without insurance. Here is a site for them where you might get some answers.

http://www.mayoclinic.org/rochester/

They do have good neurologists, doctors, etc. as far as I know at the Mayo Clinic in Rochester, MN. Hope you find an answer.
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AKA Hereditary Motor Sensory Neuropathy (HMSN).


Last edited by Kitt; 12-05-2012 at 10:16 AM.
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Unread 12-04-2012, 07:50 PM   #4
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Welcome to Neuro Talk. I sure would hate to have you spend all that to get to Mayo clinic, and then not be satisfied with a DX. Yes they are very good at DX. I went there in the early 80's for auto immune problems. A little impersonal, but good none the less. I think your expences would depend on what testing they would want to do for you. A referral is also needed from a physician. If you go, bring all of your records. There is housing available for those seeking treatment. You stay in a home with your own bedroom and bathroom for very little cost. This can be found on Google or their patient advocasy program. I did this, and it saved alot of money for the week I was there. If you can find out through NT, what the tests are for RSD and CRPS, maybe their staff could give you an idea of the costs before hand. I sure hope you can find dianosis and treatment. Ketamine infusions have been used by our service members and others with success. On the RSD Forum, you can read about it. I do wish you all the best. I am sorry you are in such pain. ginnie
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Unread 12-05-2012, 07:32 AM   #5
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Mayo chooses whether to see you or not.

After you provide the medical documents from your physicians, they may decide to not see you. So prepare for that possibility.
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"Thanks for this!" says:
en bloc (12-05-2012), Kitt (12-05-2012)
Unread 12-05-2012, 08:19 AM   #6
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Would you consider Johns Hopkins, in Baltimore, since they are on the east coast? Their reputation in neurology is at least the equal of Mayo, and from what I have read, better. I was seen there several times and would not hesitate to go back.
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Unread 12-05-2012, 10:16 AM   #7
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Sometimes I think the expertise on certain things at a Mayo Clinic would depend on which Mayo Clinic a person goes to. Obviously different doctors/neurologists, etc. JMO
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Last edited by Kitt; 12-05-2012 at 10:33 AM.
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Unread 12-06-2012, 06:18 AM   #8
Rune
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Hi again

Thanks a lot for all the replies! Very helpful.

The reason I spoke about Mayo Minnesota, was that that clinic responded to my request for an appointment at mayos website (I'm currently working on translating all the different reports from German and Danish to English, some of them are full of latin etc. I have accordingly not send them to Mayo yet, and I'm still unsure whether till wait to past in january with the danish top neurologist, with visiting Mayo). I do not really care where in the US, as a trip to the US is long anyway. No one in my family has Ehlers (and I do not really have the symptoms, I do not think the German hospital team did a good job). My uncle does have diabetes, which is why I'm changing my diet in order to see if it can help (I already ate quite healthy, but I saw foodmatters and got inspired).
I did have several vaccines in the past, especially in autumn 2008 when my family was visiting Tanzania: Yellow fewer. hepatitis A+B+C and malarone pills against malaria. No, I do not think I have been tested for b-12 (I have had a lot of different blood tests, no idea if they tested for b12), kind of working out a list of all the stuff I need to ask my doctor about when I make my next appointment. I had checked out the CRPS site beforehand, will do some more research though. I love warmth, dislike cold at my leg. Started taking epsom salt foot baths. I also have had allodynia for years because of a very uncomfortable foot massage. I cannot have people touching my feet, more than very softly. Problem is that the discolouring is mostly present when I wake up and take my socks off for a while - in order to get some air to the feet. In the afternoons the discoluring is not so present, and then the neurologists don’t believe me, despite of my photos. I dont get it, my parents have seen the discoloring many times so it's not like it's my secret . I also have a low amount of white blood cells aka problems in the immune system.

I have had pain related problems in my arms for years. The pain in the right foot and calf started weeks after the arthroscopy in june 2011. After the operation the pain in the knee gradually stopped, suggesting the operation was successful, but then the mentioned areas started to hurt. Actually the new pain first appeared after a session of physiotherapy 14 days after the operation, where I really was pushed to exercise a lot.

There is definitely something wrong in my autonomous nerve system. Whether is one disease or the other, I do not know. I have some trouble understanding how I could suffer only from CRPS as I had other problems for years, before the operation. Yet, the concept CRPS helps explain why the right leg has started being so painful, while the left leg has been much better (before I read about CRPS at Mayo’s website, this was very confusing for me).

Best regards!

PS:I have awoken much earlier than usual these last days, I hope the vitamin
supplements and diet change is slowly starting to work.
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Unread 12-07-2012, 02:56 PM   #9
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I went to the Mayo in MN. It was extreme cold, at -27. The car did not start the whole time I was there. I don't know how the Mayo in Jacksonville fla is for CRPS DX. I do know at this time of year it is warmer. I wish you all the best. ginnie
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