RE: Appointment
Dear Dr Bland, firstly, congratulations on creating this website for patient interaction.
Secondly, you responded to a referral from Dr S-R of the WHH, with an appointment for 3rd September '12, on the possibilty of CTS but a welcomed phone call from Charlotte last Thursday 26th July offered an oppointment last Saturday.
This may seem odd but I was hoping my CTS test would have been positive in order to meet you. Having been epileptic for 43 years, a Chiropractic now also reports Degenerative Disc Disease with Osteoarthritis and another test reveals stage 3 Adrenal Fatigue. So I'm still seeking some answers. The greatest annoyance is fatigue, lack of motivation and constant cold hands.
The years of anticonvulsant use, that couldn't be avoided, have seriously depleted vitamins B & D as another private 25 hydroxy-vitamin D test proved insufficiency at just 34 nmols/L. I've since raised levels to 98.6 and continuing on 5000 IU's daily.
I've been asked why I'm not on any pain relief and believe it could be the the daily 500 mgs of Magnesium that's providing an analgesic effect. I'm also supplementing with Coenczyme Q10 100 mgs daily.
Would you be able to advise on supplementing with DHEA as my Adrenal test result shows a low Mean level of just 0.10 (range 0.20-0.70). The DHEA Cortisol Ratio is also low at just 0.24 (range 0.6- 3.0).
Thank you again for this website and I wondered if you were aware of Dr's Tom and Dan Hoch, What I’ve Learned from e-Patients”?
As a neurologist subspecializing in epilepsy at a respected academic institution, I (DH) assumed that I knew everything I needed to know about epilepsy and patients with epilepsy. I was wrong.
I knew that many patients with chronic diseases had been making use of online medical information [2]. Nonetheless, I was shocked, fascinated, and more than a bit confused by what I saw. I’d been trained in the old medical school style: my instructors had insisted that patients could not be trusted to understand or manage complex medical matters. Thinking back through my years of training and practice, I realized that there had always been an unspoken prohibition against groups of patients getting together. I had the uncomfortable sense that by promoting interactions between patients and de-emphasizing the central role of the physician, I might be violating some deep taboo.
A full transcription can be found at http://e-patients.net/archives/2010/05/what-ive-learned-from-e-patients-....
Kind regards, Will
Dear Dr Bland, thank you for the "E-Dave" link.
I received written confirmation Saturday morning from Dr S-R that tests do not indicate CTS.
But, with continuing tingling and numbness, as opposed to further Rheumatic investigation I've been referred back to my GP. A 10 minute consultation this morning resulted in the GP agreeing with Dr S-R to a further referral for a CTS test in 6 months time.
I expressed concern at the debilitating pain and numbness and asked if we could explore a possible diagnosis of Psoriasis to which I’m told that my last bloodwork is normal and there is no Psoriasis test. A clinical diagnosis would, if confirmed, only be treated with pain relief?
Since the CTS test I am somewhat dismayed that further investigation has not been offered following emailing my Chiropractic report, confirming Degenerative Disc Disease and Osteoarthritis to Dr S-R asking for it to be part of my permanent NHS records.
I was reminded that referrals are only based upon clinical blood tests. The following information may indicate how and why a lack of holistic input is causing many people being left undiagnosed, or until their health declines to a point of requiring surgery, when they may have become too old, or even an anaesthetic risk?
It was nearly12 months ago that I suspected a Vitamin D deficiency but was declined any test. As previously mentioned I eventually paid privately and upon proving the insufficiency was offered a FBC where serum B12 revealed a subclinical level of 348 ng/L (range 189-883). No treatment was offered even though I was phoning all and sundry every 5 minutes with anxiety and panic attacks, including my surgery and pharmacist. I’ve since self medicated with high strength B Complex @ 10000% RDA to raise levels to 538 ng/L. My nervousness has since abated. Again, by self medicating, I've raised my subclinical Ferritin level of 55 ug/L to 104 ug/L (range 22 - 275)
After being prescribed Prozac for 12 years I also devised my own Prozac withdrawal program, even though I was considered too emotionally labile to consider such treatment. After discovering that 94% of Prozac was Fluoride I knew what was causing the decline in health and drastic action was needed. I’ve since withdrawn successfully for 4 months but of all days to have taken the last dose was April 1st. Despite my GP saying that I’m far from being a fool he has complemented me but his hands are tied?
I apologise for the lengthy post but I would like my experience to help, if not avoid, someone from following my horrendous nightmare of pharmaceutical interactions and their detriment to one’s health. Even at this moment panic attacks are returning with cold holds. I believe is due to stress at wanting, and failing, to find a 100% diagnosis?
Kind regards, Will
Firstly I should apologise for the fact that you did not in the end attend my clinic. The hospital management decided that a group of patients who had been referred to my carpal tunnel clinic should be seen by other people while I was on annual leave in order to not breach waiting list targets. You have therefore had tests performed but not had a chance to see me with the results.
Although it is not my area of expertise I believe that a significant proportion of the UK population are vit D deficient. The other blood results you mention are the province of endocrinology - a branch of medicine which I have largely forgotten I'm afraid so I'm not going to comment - I would probably be less well informed than yourself unless I spent some time reading up the current state of the art - and I have a large pile of CTS papers to deal with.
The 'e-patient' phenomenon is fascinating - there is a good TED talk on 'e-patient Dave' if you search. As you may have gathered from this site I am generally in favour of patients being as well informed as possible, especially about chronic diseases and elective procedures. I think the business of medical care works best however when the patients and doctor are near-equal partners in seeking a solution to the patient's problem.
I will be reviewing all the cases which were tested in my absence next week sometime and we will recall any patients who it seems might benefit from seeing me but as yet I do not know what the quality of the records made will be or how much work will be involved in catching up. I can however see from the web questionnaire that your symptoms are not really typical of CTS so I suspect we may not meet. JB