I am a 48 year old French chap so my English is not perfect.
I registered on this diabetes forum because there is no such a forum in French.
My history of prediabetes and peripheral neuropathy misdiagnosis continues.
In Part 1:
I explained my early symptoms (initially some mild numbness and tingling in left foot then some general discomfort: fatigue, appetite loss, night sweats, leg cramps) in early 2019 and my many visits to my GP and specialists. Being given an easy dignaostic of "too tight shoes" and "burn-out" by the neurologist and my GP I had no real answer to my symptoms but unexpectedly started feeling better in August 2019 and went stupidly back to my bad eating habits (mainly too much bread and butter), my metabolic syndrome was back. I had then zero personal information on what peripherical neuropathy is.
In Part 2:
I explained how in 2021 the occasional tingling progressed to my right foot but without causing any real discomfort.
Early 2022 the tingling became really annoying but only in shoes that I then vaguely thought were to blame.
End of April I started becoming a bit sluggish, without any energy and strength. I went for a 10 day vacation trip to Brittany in May to have long walks that I hope would help me get back in shape and regain my former energy. My energy did not come back and after this trip, the tingling suddenly became vivid in both feet. I became anxious and after a few internet searches I suspected diabetes, learned what peripheral neuropathy is.
Something had to be done. I first lost appetite and weight (-7kg) and then visited my GP, blood tests showed low prediabetes (1.11gr/6.16mmol and second test 1.08gr) and in the norm A1C (5.3%/37mmol), no surprise after a 1 month strict diet. I explained how my GP is in denial of a highly possible (pre)diabtic past periods (before and after 2019) that could have explained my symptoms, how her thinking is only limited to A1C cureent good value biased by a pretest diet. Anyhow she prescribed an EMG test.
So here is part 3:
I visited the neurologist in early June 2022, the same neurolgist that I had visited in 2019. I explained her my symptoms.
Like in 2019 she raised the anxiety issue, her first sentance was "you tend to be an anxious person, don't you?". She conducted the usual EMG and NCS tests that came out OK as I had expected.
She did the sensitive tests quickly: she performed the tuning fork test, I did not really feel the vibrations but rather the pressure of the tuning fork, I guess it was OK to her because she did not say anything.
Her diagnostic was of strictly normal EMG values.
As for my feet tingling symptoms she advised me to visit an ortopodist, that my shoes were probably not adapted. Maybe I should have insisted more on the symptoms, I tried to explain her my prediabetic concerns but she wanted to hear none of it. She did not seem ready to discuss the previous visit done in 2019 (see post Part1). Would she be unconfortable if having to reconsider her 2019 diagnosis? Hard to tell.
With her I did not directly engage the conversation on the small fiber or peripheral neuropathy subject, I wish I had. A useless visit I thought. Not the right intuitive neurologist for my symptoms.
My biggest criticism is that when a patient is presenting unexplained sensitive symptoms in one foot or both feet a neurologist should always raise the possible risk of a diabetes related peripheral neuropathy (which can affect prediabetic/metablic syndrome profiles). Prevention is so important!
Still I sent her an email some days later insisting more on the pain aspect of my symptoms, mentionning the small fiber subject. She responded with a very short sharp email telling me to go to one big general hospital (Henri Mondor in the Paris suburb) so to have a Laser Evocated Potentials test.
If i got it right from the net it is a quick test with which feet receive some laser beams and the brain activity is measured to check for nerve response and velocity, specificity is of about 80%.
I called 20 times the supposed hospital departement in charge of this test to no avail: apparently totally out of reach without an inside contact. Very little information is available online on that test which was introduced in that hospital maybe 8 years ago. Is that test really worth all the energy and trouble to get an appointment?
Meanwhile I prefer turning towards the Sudoscan test (performed in France by some very few neurologists and a couple of chemist shops). Sudoscan checks for the sweating small fibers reactivity in hands and feet, has a sensitivity of around 70% I think, still better than nothing. A French patented device dating back to 2012 or so.
The skin biopsy is probably the best diagnostic test but it's much too difficult and long to obtain a visit, result takes way too long to be returned (according to some peripheral neuropathy patient posts on a French forum).
In mid July I had a visit with my GP, showed her the EMG good test and a new blood test with 1.08gr fasting BG (still in prediabetic range). I explained her how my symptoms had worsen (feet pain, fatigue, lack of sleep, walking becoming awkward, etc.).
Still in denial of my likely prediabetic past history she seemed satisfied with the blood and EMG tests. I really had to insist strongly on the peripherical neuropathy so to get her attention on it. She seems to be used only to diabetics having a long established diagnosis so my profile doesn't fit well with her logics.
Still she prescribed Laroxyl (Amitriptyline) and a visit to an andocrinologist. After I insisted she kind of agreed on a prediabetes diagnostic. She doesn't seem to know what peripheral neuropathy pains exactly are (early symptoms, variety of symtoms).
In mid July I eventually called for a Sudoscan test which is available in very few places in Paris. I went to a Parisian pharmacy with a feeling of maybe waisting my time but curiosity prevailed and I had this cheap test done (5 euros!). This is like 2 weighing slates on which you place your bare feet and palms of the hand for 3 minutes while some electricity is produced.
The feet and hands are supposed to sweat, the induced chemical reaction being captured by the slates and a computer produces a 1 page test report. My test was ok, I do not have so far any problem with my sweating nerves. Though initially promissing the Sudoscan technology doesn't seem to have taken off, there were quite a few articles in the net arount 2015 but since then it seems to have lost the interest of many. Probably far from a sufficient solution to diagnose diabetic peripheral neuropathy.
In my case probably the best option is to visist an andocrinologist who has a sound experience of (pre)diabetic symptoms.
I scheduled an appointment with an endocrinologist for the end of August.
I would like here to spend a bit of time detailing what my symptoms are up to this date (July 31st 2022):
- Feet: a bit thiner, having seemingly lost a bit of muscle. Skin seems a bit dry.
Sporadic cutting pains around toes.
Kind of cramps and pains in the sole, as if the cushion effect is almost gone, sole contact zones are getting more painful. Deep dull pain in front foot, as if it is getting divided in 2 left and right parts. Some frequent twitching in mainly calves and at times in thies. The twitching is activated as soon after walking (even for only a few steps). Usual shoes feel too tight and painful.
Sometimes my feet wake me up in the middle of the night (burning pain).
Almost constant feeling of having to fight off paralysis.
A times feet are cold, espcially just above the heel. In the morning when I wake up they tend to be numb, I have to reactivate them by flexing the toes, touching them.
- Walking: I become anxious as soon I need standing up and doing a few steps, it's depressing. I am much of the time sitting or reclining.
In some sort of contradicting way I am more ok with having very long "fast-paced" walks with sport shoes because I know that my feet will get used to it after a while: it makes me feel I can still walk around. I have done a couple of long "fast-paced" walks (10km), they give distraction and positive feeling. I cannot jog for more than 2-3km, used to make 10+km less than a year ago
A recent problem has appeared: a lack of balance while walking, I sway at times and tend not to keep on a straight line, feeling also slighly dizzy.
- Gait: keeping balance when standing up is less obvious. Orthostatism is frequent, if not systematic (my feet are probably not playing well their blood pressure role).
- Hands: some very recent burning slight feeling at times, very sporadic slight tingling pains or numbness.
- Sweating: becomes systematic, as soon as I start walking.
I feel "sticky" almost constantly because sweats are almost permanant. Unexplainable sweats are frequent, including at night.
- Mouth: at times dry, as if saliva glands are not always active. Seems to have an impact on the throat, at times on vocal cords and voice.
- Direct sunlight is more sensistive.
- Fatigue: almost constant, when I do not feel tired I am suprised by this.
- Sleep: rarely complete, feeling exhausted when I wake up. I don't know yet if Laroxyl does any improvement.
- Moral: depressive state lurks in, there is no way out. I just take one day after one another. No futur projection.
- Weight: though eating normally I kind of struggle to not let my weight go down too much (83kg for 1.86m). Seems like neuropathy is consumming a lot of energy and my body gets thinner.
Next actions:
- getting a few complements (vitamins B12, D, etc.)
- one blood test after eating (for a couple of days) like during my metabolic syndrom period. This test will show if it comes closer to diabetic or normal values. Also I intend to monitor my BG after meals since I currently don't know if I suffer from "spikes".
Then I will produce it to both my GP and the endocrinologist on August 24th
See coming next Part 4 for the rest of the history.
I registered on this diabetes forum because there is no such a forum in French.
My history of prediabetes and peripheral neuropathy misdiagnosis continues.
In Part 1:
I explained my early symptoms (initially some mild numbness and tingling in left foot then some general discomfort: fatigue, appetite loss, night sweats, leg cramps) in early 2019 and my many visits to my GP and specialists. Being given an easy dignaostic of "too tight shoes" and "burn-out" by the neurologist and my GP I had no real answer to my symptoms but unexpectedly started feeling better in August 2019 and went stupidly back to my bad eating habits (mainly too much bread and butter), my metabolic syndrome was back. I had then zero personal information on what peripherical neuropathy is.
In Part 2:
I explained how in 2021 the occasional tingling progressed to my right foot but without causing any real discomfort.
Early 2022 the tingling became really annoying but only in shoes that I then vaguely thought were to blame.
End of April I started becoming a bit sluggish, without any energy and strength. I went for a 10 day vacation trip to Brittany in May to have long walks that I hope would help me get back in shape and regain my former energy. My energy did not come back and after this trip, the tingling suddenly became vivid in both feet. I became anxious and after a few internet searches I suspected diabetes, learned what peripheral neuropathy is.
Something had to be done. I first lost appetite and weight (-7kg) and then visited my GP, blood tests showed low prediabetes (1.11gr/6.16mmol and second test 1.08gr) and in the norm A1C (5.3%/37mmol), no surprise after a 1 month strict diet. I explained how my GP is in denial of a highly possible (pre)diabtic past periods (before and after 2019) that could have explained my symptoms, how her thinking is only limited to A1C cureent good value biased by a pretest diet. Anyhow she prescribed an EMG test.
So here is part 3:
I visited the neurologist in early June 2022, the same neurolgist that I had visited in 2019. I explained her my symptoms.
Like in 2019 she raised the anxiety issue, her first sentance was "you tend to be an anxious person, don't you?". She conducted the usual EMG and NCS tests that came out OK as I had expected.
She did the sensitive tests quickly: she performed the tuning fork test, I did not really feel the vibrations but rather the pressure of the tuning fork, I guess it was OK to her because she did not say anything.
Her diagnostic was of strictly normal EMG values.
As for my feet tingling symptoms she advised me to visit an ortopodist, that my shoes were probably not adapted. Maybe I should have insisted more on the symptoms, I tried to explain her my prediabetic concerns but she wanted to hear none of it. She did not seem ready to discuss the previous visit done in 2019 (see post Part1). Would she be unconfortable if having to reconsider her 2019 diagnosis? Hard to tell.
With her I did not directly engage the conversation on the small fiber or peripheral neuropathy subject, I wish I had. A useless visit I thought. Not the right intuitive neurologist for my symptoms.
My biggest criticism is that when a patient is presenting unexplained sensitive symptoms in one foot or both feet a neurologist should always raise the possible risk of a diabetes related peripheral neuropathy (which can affect prediabetic/metablic syndrome profiles). Prevention is so important!
Still I sent her an email some days later insisting more on the pain aspect of my symptoms, mentionning the small fiber subject. She responded with a very short sharp email telling me to go to one big general hospital (Henri Mondor in the Paris suburb) so to have a Laser Evocated Potentials test.
If i got it right from the net it is a quick test with which feet receive some laser beams and the brain activity is measured to check for nerve response and velocity, specificity is of about 80%.
I called 20 times the supposed hospital departement in charge of this test to no avail: apparently totally out of reach without an inside contact. Very little information is available online on that test which was introduced in that hospital maybe 8 years ago. Is that test really worth all the energy and trouble to get an appointment?
Meanwhile I prefer turning towards the Sudoscan test (performed in France by some very few neurologists and a couple of chemist shops). Sudoscan checks for the sweating small fibers reactivity in hands and feet, has a sensitivity of around 70% I think, still better than nothing. A French patented device dating back to 2012 or so.
The skin biopsy is probably the best diagnostic test but it's much too difficult and long to obtain a visit, result takes way too long to be returned (according to some peripheral neuropathy patient posts on a French forum).
In mid July I had a visit with my GP, showed her the EMG good test and a new blood test with 1.08gr fasting BG (still in prediabetic range). I explained her how my symptoms had worsen (feet pain, fatigue, lack of sleep, walking becoming awkward, etc.).
Still in denial of my likely prediabetic past history she seemed satisfied with the blood and EMG tests. I really had to insist strongly on the peripherical neuropathy so to get her attention on it. She seems to be used only to diabetics having a long established diagnosis so my profile doesn't fit well with her logics.
Still she prescribed Laroxyl (Amitriptyline) and a visit to an andocrinologist. After I insisted she kind of agreed on a prediabetes diagnostic. She doesn't seem to know what peripheral neuropathy pains exactly are (early symptoms, variety of symtoms).
In mid July I eventually called for a Sudoscan test which is available in very few places in Paris. I went to a Parisian pharmacy with a feeling of maybe waisting my time but curiosity prevailed and I had this cheap test done (5 euros!). This is like 2 weighing slates on which you place your bare feet and palms of the hand for 3 minutes while some electricity is produced.
The feet and hands are supposed to sweat, the induced chemical reaction being captured by the slates and a computer produces a 1 page test report. My test was ok, I do not have so far any problem with my sweating nerves. Though initially promissing the Sudoscan technology doesn't seem to have taken off, there were quite a few articles in the net arount 2015 but since then it seems to have lost the interest of many. Probably far from a sufficient solution to diagnose diabetic peripheral neuropathy.
In my case probably the best option is to visist an andocrinologist who has a sound experience of (pre)diabetic symptoms.
I scheduled an appointment with an endocrinologist for the end of August.
I would like here to spend a bit of time detailing what my symptoms are up to this date (July 31st 2022):
- Feet: a bit thiner, having seemingly lost a bit of muscle. Skin seems a bit dry.
Sporadic cutting pains around toes.
Kind of cramps and pains in the sole, as if the cushion effect is almost gone, sole contact zones are getting more painful. Deep dull pain in front foot, as if it is getting divided in 2 left and right parts. Some frequent twitching in mainly calves and at times in thies. The twitching is activated as soon after walking (even for only a few steps). Usual shoes feel too tight and painful.
Sometimes my feet wake me up in the middle of the night (burning pain).
Almost constant feeling of having to fight off paralysis.
A times feet are cold, espcially just above the heel. In the morning when I wake up they tend to be numb, I have to reactivate them by flexing the toes, touching them.
- Walking: I become anxious as soon I need standing up and doing a few steps, it's depressing. I am much of the time sitting or reclining.
In some sort of contradicting way I am more ok with having very long "fast-paced" walks with sport shoes because I know that my feet will get used to it after a while: it makes me feel I can still walk around. I have done a couple of long "fast-paced" walks (10km), they give distraction and positive feeling. I cannot jog for more than 2-3km, used to make 10+km less than a year ago
A recent problem has appeared: a lack of balance while walking, I sway at times and tend not to keep on a straight line, feeling also slighly dizzy.
- Gait: keeping balance when standing up is less obvious. Orthostatism is frequent, if not systematic (my feet are probably not playing well their blood pressure role).
- Hands: some very recent burning slight feeling at times, very sporadic slight tingling pains or numbness.
- Sweating: becomes systematic, as soon as I start walking.
I feel "sticky" almost constantly because sweats are almost permanant. Unexplainable sweats are frequent, including at night.
- Mouth: at times dry, as if saliva glands are not always active. Seems to have an impact on the throat, at times on vocal cords and voice.
- Direct sunlight is more sensistive.
- Fatigue: almost constant, when I do not feel tired I am suprised by this.
- Sleep: rarely complete, feeling exhausted when I wake up. I don't know yet if Laroxyl does any improvement.
- Moral: depressive state lurks in, there is no way out. I just take one day after one another. No futur projection.
- Weight: though eating normally I kind of struggle to not let my weight go down too much (83kg for 1.86m). Seems like neuropathy is consumming a lot of energy and my body gets thinner.
Next actions:
- getting a few complements (vitamins B12, D, etc.)
- one blood test after eating (for a couple of days) like during my metabolic syndrom period. This test will show if it comes closer to diabetic or normal values. Also I intend to monitor my BG after meals since I currently don't know if I suffer from "spikes".
Then I will produce it to both my GP and the endocrinologist on August 24th
See coming next Part 4 for the rest of the history.
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