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  #1  
Old 08-16-2013, 01:04 PM
andrewuk1976 andrewuk1976 is offline
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Join Date: Nov 2012
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Default Hello. New Member.

Hello All,

My name is Andrew and I live in Taiwan (previously in the UK).

I registered a while ago but I didn't post. I have been to several medical doctors (orthopaedic, neurology, rheumatology, rehabilitation and physical therapy) but no one really knows what's going on :-)

Back in Jan 2010, I started to have plantar fasciitis pain down my right foot. A couple of months later, I started to have burning sensation all over the sole of both my feet. Another 2 months later, I started to have cold sensation and pain down my buttock and also pain in lower back. Since 2011, I have also had neck and shoulder pain.

I had 3 MRIs (one on feet and two on whole spine), ultrasounds and several blood tests. See attachments of the most recent MRI.

MRI of my spines shows degenerations of disc and a couple of bulging discs. But all specialists told me that non nerve is pinched and the disc is not pressing the spinal cord either. So just degeneration and a couple of bulging discs that do not press or pinch any nerve.

MRI also shows my spine loses it's natural curve.

Ultrasound showed inflammation of Achilles tendon and plantar fascia of both feet and bone spurs there. The rheumatologist initially suspected Ankylosing spondylitiis. But all my blood tests are normal (HLA-B27, CRP, ESR, Rheumatoid factor. But my ANA is elevated) All other blood tests were normal, including Vitamin B12 and thyroid.

One month ago I went to see a muscularskelatal specialist. And he wanted me to have Vitamin D checked. It turns out to be low. 17ng/ml. (17ng/ml was after 6 weeks of 5000iu of Vitamin D3 and daily sunshine...) But my calcium and magnesium levels are normal and bone density is normal too. He said my wide spread pain is caused by low level of Vitamin D, and perhaps osteomalacia. So I am on Vitamin D3 Calcitriol for 3 months.

My symptoms are - stiff muscles and weak muscles. Pain in lower back and sacroiliac joints, feet pain, weak muscles, neck pain and also buttock pain (where I sit). My muscle is very weak that even 5 minutes holding newspaper, my arms, neck and shoulders are very sore.

I go to a physiotherapist who gives me gentle massages twice a week. Once the muscles are relaxed, my symptoms are pretty much gone..... But after 24 hours, the muscle starts to get stiff. And when the muscle gets stiff, my lower back, neck and feet starts to ache....

I did try to take Lyrica. It helped very well in the first week. Then the muscle stiffness returned after one week. And it no longer worked....

So I am curious if anyone can share his/her opinion on my case and if I should proceed with a rheumatology or ... Does it sound like osteomalacia? is Vitamin D 17ng/ml low enough to produce all these widespread pain? Any neurological disease that can cause these? Or is it merely spinal disc degeneration that causes these symptoms?

Any feedback would be greatly appreciated.

Andrew
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  #2  
Old 08-16-2013, 05:39 PM
NJ Gene NJ Gene is offline
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Join Date: Feb 2013
Posts: 376
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Andrew, it sounds like you're having a bunch of things going on. I suggest you see a podiatrist for the issues relating to your feet. I'm not sure what to suggest regarding your other issues, but I'm sure others reading these posts will.

Good luck to you!!

Gene
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Car Accident 2002 - Small Herniated Disc C3/C4
1998 Larger Herniation and Cervical Fusion C3/C4
2005 Herniation C4/C5 - 40 epidural steroid injections from Oct 2005, - Oct, 2007
2008 - Foraminotomy at C6/C7 on left side
Feb, 2010 - Cervical Fusion C4/C5
Dec, 2010 - Lumbar Fusion L3/L5
2013 - Bulge on C5/C6; herniation C6/C7 right side
Mar 26, 2013 - Foraminotomy at C6/C7 on right side
May 5, 2015 - ADR with Dr Blumenthal of TBI for C5/C6 using Mobi-C
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  #3  
Old 08-17-2013, 11:09 AM
andrewuk1976 andrewuk1976 is offline
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Join Date: Nov 2012
Posts: 4
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Hello Gene,

Thank you for your reply.

I had already visited several podiatrists :-)

But I find if the muscles in my back is relaxed, my feet are so much better.

Thank you again for your reply.

Andrew
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  #4  
Old 08-17-2013, 08:24 PM
annapurna annapurna is offline
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In general, everyone's experience is that pain and pathology don't correlate. It's possible for someone to have serious disability and pain for very little detectable damage. The opposite is also true, lots of damage for very little pain.

That said, loss of your lordotic curve suggests that you're at least on the edge of serious problems. Low bone density could explain this, especially given the other concerns you've listed. Have you had that checked with a DEXA scan or similar? As a male you'll have to argue hard to get it checked but it might give you and idea of how severe and widespread any osteomalacia might be.

Unfortunately, everything you've described could be linked to nerve pain from bulging disks, but if that were true Lyrica should have had more effect. It's always possible that you have a poor reaction to Lyrica. It's also possible that the Lyrica helped with one part of the problem but failed to address all of your problems and gave you the impression that it had no effect at all.

I don't have any real suggestions that can help here. You simply have too many problems for a layperson's opinion to be meaningful. You can try a high-level Vitamin D supplement and lots of natural light to see if that changes anything in the way you feel. I'd pick a reasonable time frame if you do so and keep a health journal to see if you really feel different.

If you do ultimately pursue surgery, you're going to need to regain as much fitness as possible. At the point you're describing in your post, surgical recovery would be extremely lengthy and very difficult. Anything you could do to permit a bit more activity per day and improved health will be paid back if you do ultimately pursue some kind of high level intervention.

Do you smoke? There's a thread here talking abut research linking degenerative disk disease, especially for multiple disks at a time. If you don't smoke but are exposed to second-hand smoke, you might also want to check into the research. No one knows if second-hand smoke would be as bad, but it can't be helping your disks.

Laura mentioned having yourself checked for heavy metal levels. You'll typically find that everyone thinks of this as an acute problem but sub-acute levels can lead to long-term musculoskeletal problems. You might also want to read Rich's (AKA Harrison) information about chronic infections, which could also be shown to lead to all of the problems you mention. I wish I had better advice and clearer direction but I suspect that you're going to have to put together a treatment plan (treatment A for x weeks then see if you improve, then try treatment B for y weeks and check again).
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Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
General joint hypermobility

Jim - C4/5, C5/6, L4/5 disk bulges and facet damage, L4/5 disk tears, currently using regenerative medicine to address

"There are many Annapurnas in the lives of men" Maurice Herzog
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  #5  
Old 08-17-2013, 08:38 PM
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Harrison Harrison is offline
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Andrew, I am moving your post to the New Member section. Sorry you are here, but I hope we can help. Your English it impeccable!

Personally, I believe certain cases of plantar fasciitis stem from bacterial diseases. I've talked to dozens of patients that have got this condition after tick bites. Some of them say it is a co-infection called Bartonella; others say it is Borrelia (the bug that causes Lyme Disease). They could both be correct.

I actually got plantar fasciitis really bad in the late 90s -- right after long fatigue spells and other weird conditions. Guess what? Back pain followed. Then surgery. Then another infection (mycoplasma pneumonia). Now you can see why I am such a nut about getting the proper molecular diagnostics to detect sub-clinical infections!

OK, 談談您的到來
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  #6  
Old 08-17-2013, 08:42 PM
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Harrison Harrison is offline
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Andrew, I almost forgot to mention to you: you can see my documentary across the world in 5 different languages. It's sub-titled in simplified and traditional Chinese. Most of the film focuses on sub-clinical infections and how to detect them with molecular diagnostics. Let me know if you would like to watch it online. It's on DVD but available outside the country online. At the end of the year it will be available everywhere online.

See Why Am I Still Sick?
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #7  
Old 08-19-2013, 02:56 AM
andrewuk1976 andrewuk1976 is offline
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Join Date: Nov 2012
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Hello Richard, Jim and Laura,

Thank you very much for your reply.

My current plan is to try Vitamin D first (Calcitriol). This doctor told me it will take at least 3 months, if not 6 months, to get my Vitamin D level to 30, the minimum level he wants me to be at.

At the same time, I am also very interested in exploring the possibility of chronic infections, be it Lyme Disease or others. So I will be visiting a doctor specialising in infection. (My mother told me a tick jumped to my body when I was a kid and she quickly removed it... She said it didn't bite me and I didn't develop any rash or any symptom after that..)

As for surgery, even though I was desperate enough to ask all the doctors I saw to operate on me, they all unanimously declined.... They all said there is nothing to operate... They told me from the MRI, there is nothing they can see that would result in my symptoms. And they do not think any surgery would provide any relief.. So I think this route is gone for me...

And they all point to muscles... They think my muscles are too stiff and they wanted me to go to their physiotherapy department... And it didn't help.

Another possibility they pointed out is Sacroiliac joint inflammation. Then again, this is very hard to diagnose and this can be caused by infection too.

Regarding infections - I had tried Minocycline for 100 days. And then I tried Maxifloxacin for 100 days too. I don't think there was great improvement. I think later this year I may try Augmentin and then Doxycycline. (A friend of mine is a medical doctor and he is supervising this for me)

By the way, I am a non smoker. Well, I have been free from smoking for 5 years. (I smoked for 3 years)

I am very curious to have the heavy metal checked out.... I just called a test centre and they can test for me. But they need me to tick 6 items. I wonder if you know which 6 metals are more likely to be accumulated in the body. They also offer blood test or urine test for heavy metal. I assume the blood test would be more accurate?

Oh bone scan. I went to a clinic and they asked me to put my ankle into something to test my bone density. It was normal....

So except Vitamin D and ANA +, the other blood tests are pretty much normal...

Richard, is there anyway to find out which bacteria is present in the chronic infection?

My current situation isn't too bad... With the twice weekly gentle massage, I am able to do most thing with some bearable discomfort. And I don't need to take any medications right now. And once a week or so when the muscle is very stiff or when the pain is quite intense, I would take Lyrica or Ultracet (Tramadol+Acetaminophen). They work very well. Especially Lyrica, the stiff muscles instantly relieve and the symptoms are mostly gone. I am able to walk about 20 minutes. And if I just move around, without remaining on one posture of sitting or standing, I can pretty much function for 6 hours. But if I sit or stand for more than 20 minutes, the pain would definitely increase.

Best wishes,

Andrew
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  #8  
Old 08-19-2013, 03:00 AM
andrewuk1976 andrewuk1976 is offline
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Hello Richard,

I am be very interested in watching your DVD online.

Thinking of this, I remember when I was living in England, I probably had an infection a year.. Nothing serious but doctors gave me antibiotics for them. I think it was mostly chest infections...

Best wishes,

Andrew Lai
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