SO I have had a letter and I do not know what to make of it.
The guy that did the Nerve Conduction Studies and Electromyography who told me that Dominick Mort was the best there is now seems to have spoken too soon as it looks like I will not see him again.
I now realised that this has happened a great deal in recent years and that you see these so-called specialists they look you up and down and if your lucky you get a test or two and then off.
The question for me is have they tested you for everything WITHIN their fields of knowledge.
I say this because as I just stated remarks are made that you will be ‘seen to’ by Doctors you are under that you end up not seeing again.
He is a Neurologist and I was sent to him because I THOUGHT I have Charcot Marie Tooth Disease and I got a damn sight closer than they ere have. CMT is not the only condition that falls under this remit.
It is a shame it appears that I have been discharged but it also looks somewhat odd in that he seems to know the outcome of the test?!
If you refer back to the previous post of my NCS and Electromyography tests the Doctor states that they will NOT contact Dominick Mort and thay give me TWO test results and one I am to give Mr Mort?!
“Here is a copy for you and one for you to give Dominick Mort when you see him”
I have not seen him but he knows and this looks highly suspicious just as the drug Gabapentin has been prescribed to me to deal with the electrical signals to my brain from my muscles. To be more specific this is to relax the excitement of the activity on the brain. Been on them a few days, feels a bit weird and having trouble sleeping right now but I will persevere but any of you that have read many posts wll know I do not do too well with Insomnia and really do hate it for a whole list of reasons.
Ooh yes become side tracked there and nearly forgot. Yes a shame I will not see him again as I would like to say to him ‘Well I am glad it is reassuring to you but as you are well aware because I fully informaed you on our ONLY meeting…after more than 12 years of searching for ANSWERS yet another BLANK is NOT reassuring to me!’
Anyway it gave me another branch, fork, so head down and I found that there are a couple of things that seem to explain it and they are Large Fibre Neuropathy and Small Fibre Neuropathy.
Now what IS extremely interesting with this, and I am afraid to say will be fatal for the NHS and all the Doctors I have EVER spoken to, is a reference to BURNING FEET.
Though I have to recall that I have been down this road before this links to one of only three conditions listed in the letter above. Tarpal/Carpal Tunnel is OFF THE TABLE as I was tested years ago for that. If I DID have it then…well still fatal for the NHS!
I had a long period back when I was 19 of burning feet that was really quite peculiar. It started after returning from a trip to France with an old friend and this condition, whatever it was I do not know, was very, VERY weird and it would feel like your soles were being heated by small radiators within your soles?!
It really was that weird and somewhat uncomfortable and as soon as I could I used to remove both my shoes and my socks whenever I could.
At the time I was chasing after amphibians in France and thought that I had picked up some fungal infection in the water. I mentioned it to doctors at the time but did not get much in the way of help.
In a Boots Chemist I saw this Germolene Foot Spray in a navy on white cannister and thought I would give it a go. Once in contact with the skin the relief was incredible and it had a very fast cooling effect on my feet.
I used this for many months and always went back and bought two cans each time and I figured that the antiseptic nature of the Germolene was keeping some fungus at bay. Eventually one day I went in to buy some and there was none on the store and I assumed they stopped making it.
But the burning fortunately never returned despite dogging me for a very long time.
Looking around on the internet doing a search on Large Fibre Neuropathy, which I have trouble finding because Small Fibre Neuropathy keeps coming up I ound the following…
Statements from the above appear below.
Symptoms of Small Fiber Neuropathy
Symptoms of small fiber neuropathy can vary widely in severity. Many individuals report the gradual onset of distal symptoms that include vague disturbances of sensation in the feet. These symptoms may include the feeling of a wrinkle in a sock that cannot be removed or of small pebbles or sand in the shoe. Others may report a cold-like pain, tingling or a pins and needles sensation. More severe symptoms of small fiber neuropathy may include burning pain that often is persistent, although it may vary in intensity throughout the day. Many patients also report transient electric shock–like pain, usually lasting only seconds, but quite severe and potentially multiple times per day. Many symptoms worsen during periods of rest and at night. In addition to spontaneous pain, many individuals report allodynia and hyperesthesia. Patients with small fiber neuropathy frequently complain that the bedsheets are exquisitely painful, and therefore, wear socks or use “foot tents” to keep the sheets from making physical contact with the feet.
Small nerve fiber neuropathies also may result in autonomic and enteric dysfunction. Patients often do not identify the relationship of these symptoms to their sensory complaints; however, when asked, they may report dry eyes, dry mouth, postural lightheadedness, presyncope, syncope, abnormal sweating, erectile dysfunction, nausea, vomiting, diarrhea, constipation, early satiety, difficulty with urinary frequency, nocturia, and/or voiding [4, 5].
Yeah I always stick my feet off the side of the bed too or out of the ends of the quilt and have always been told I have cold feet.
Paragraphs from the above appear below.
Restless Leg Syndrome. Restless Leg Syndrome (RLS) may occur without apparent cause or may be associated with medical conditions. Peripheral neuropathy has been associated with RLS.22-24 IENF studies demonstrated a subclinical small fiber neuropathy in a subset of RLS patients without dysesthesias. This may explain the response to pain medication in some patients with RLS.25
Patients with large fiber neuropathies, such as demyelinating hereditary sensory motor neuropathies complain of numbness, tingling, and weakness. Examination classically reveals diminished deep tendon reflexes, reduced vibratory and position senses, and distal weakness. The clinical impression is confirmed by electrophysiologic abnormalities, such as slowed motor and sensory conduction velocities, reduced motor and sensory action potential amplitudes, and denervation on the electromyogram.
In contrast, patients with small myelinated A delta and unmyelinated fiber C fiber involvement complain of severe pain and diminished thermal and pain perception. Due to difficulty characterizing the discomfort, orthopedists, podiatrists, and rheumatologists may initially evaluate patients for arthritic disorders. Pain is described as burning, prickling, stabbing, jabbing, or tight band-like pressure. Dysesthesias are initially localized to the toes, but may spread to the legs and even the hands and arms. The examination can be normal and reveal a stocking-glove distribution sensory loss with preserved strength. Achilles reflexes may be slightly reduced, but significantly diminished reflexes implicate large fiber co-involvement. These patients do not develop ulcers or Charcot joints.
Clinical Evaluation. For the patient with suspected small fiber neuropathy a thorough history and examination are essential. The history should contain a review of medical conditions, family history, medications, and toxic exposures. The comprehensive neurologic exam includes evaluation for orthostatic blood pressure and altered cutaneous sensation.
So the Neurologist has NOT QUITE FINISHED YET so I have just been quite deliberately fobbed off and obviously deliberately set up to make it look like that all possibilities have been tested for when they have not.
Odd then that the only thing they sent me to be tested for is the one thing he stated clearly in my meeting, all recorded, that he was sure I did not have?!
Quite bizarre and I now hope that this little road travelled now shows without a doubt that they whole system and most everyone in it os bloody corrupt based on greed and self preservation?!
Electrodiagnostic Studies. Electromyography and nerve conduction studies assess large fiber involvement, but are of only exclusive value for following the small fiber syndromes. Reduced sensory nerve action potential may be the earliest signs of large fiber co-involvement in mixed disorders. The large fiber component may become evident as the neuropathy progresses.
EH?! BUT…the letter clearly states EXCLUDING LARGE FIBRE NEUROPATHY ( and NOT SMALL)
Anyway they obviously just do not want to know, or they already DO and will not admit it, like they did 8 years ago with my Chest Wall Pain, Costochondritis, and just want to give me the impression there are things still unknown to medicine?!
Well as a scientist I am curious about things I do not know about and have to work out the reasons and the facts. AS I have mentioned several times throughout this post I thought years ago that I would eventually garner the interest of Doctor’s wanting to discover something for themselves they can the write a scientific paper about.
That just simply IS how it goes for anyone claiming to be a scientist or Doctor.
But over twelve years of my persistent explanations only seems to have a negative effect and I experience a dismissive attitude from these so called Doctors and from the letter above it looks immediately to me like nothing has changed.
But this simply is not true, oh no not true at all.
I have changed and this is far from over!
Right another appointment to be made with … THE DOCTOR!