Author Topic: “mild ataxia on knee heel testing” anyone?  (Read 907 times)

MAT51

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“mild ataxia on knee heel testing” anyone?
« on: February 02, 2018, 04:23:20 PM »
I think my late father had ataxia as he used a cane and often had falls - he was diabetic and had gout. Could this mild ataxia possibly explain the feeling of intense fatigue in both my arms 24/7 and the problems I’m having standing still without feeling my legs will give way I wonder? And is it possible to have ataxia when all EMG and nerve conduction testing are normal does anyone know? I only started to have balance issues with onset of small fibre neuropathy 7 or 8 years ago but have never had very good balance or great coordination. Often have had falls when walking - poor sense of direction.

The neurologist has looked at 3 year old MRIs and CTs and says there’s no nerve entrapment to explain my newer problem of pins and needles and worsening weakness the length of both arms with numb finger tips. Or the increasing standing/ balance problems I’m having. She hasn’t mentioned SFN or requested skin biopsies and implies I’m overthinking all my neuro symptoms and have an unhealthy  interest in understanding my Sjögren’s. She has recommended Amitriptyline or Gabapentin in a letter to my GP - even though I’ve trief both and had severe intolerances in the past. I’m afraid I can’t trust a word she says now.

« Last Edit: February 03, 2018, 12:48:06 AM by MAT51 »
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

Carolina

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Re: “mild ataxia on knee heel testing” anyone?
« Reply #1 on: February 03, 2018, 10:03:49 AM »
Severe Ataxia was one of the first things diagnosed by my first Neurologist.

Foot drop, was also observed.

However, on the initial EMG, performed thereafter, I was diagnosed with profound PN in two of the three nerves of my legs, and severe PN in the third.

We are all so different, and you are wise not to trust your doctor.  I do take Gabapentin without issues, but Amitriptyline was the cause of the fall which resulted in a compression fracture of my lumbar spine.

When I saw my orthopedist last week, he said that 99% of neuropathies cannot be reversed or 'stopped in progress', if progress there will be.  And 60% or more are idiopathic in nature, with no discoverable cause.

I knew this already, and I am angered by the large number of websites and practitioners who claim that the right exercise or supplements will 'fix neuropathy'.

I know that many people experience perceived improvement from everything including herbal supplements, chiropractic, acupuncture and other methods.   I also understand the placebo effect.  Would that I could experience it.

I have yet to actually hear from anyone who had reversal of or improvement in neuropathy from high dose IgG, but that possibility is still on the table.  My neuropathy is far too profound to respond to that treatment, however.

I know your frustration sorrow, MAT51. 

Best wishes,  Elaine


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MAT51

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Re: “mild ataxia on knee heel testing” anyone?
« Reply #2 on: February 03, 2018, 10:46:30 AM »
Thanks Elaine. I know that the PN cannot be reversed and likely won’t be halted in its tracks either. All we can hope for is the self limiting type - which mine doesn’t appear to be sadly not has yours been either of course.

What upsets me is that my neurologist doesn’t spell this out properly to me or write it in her letters. Instead she implies that my very personal approach to self managing this SFN is leading to a kind of “heightened health awareness” which concerns her. By this she means me decorating my walking aids to make them more funky, reporting challenging new symptoms to her more than once a year, in case they are important - and also of doing a PhD as an artist trying to find ways to visualise sensory disturbances in order to improve the wellbeing of fellow sufferers. And also my volunteering for improved health and care services nationally. She seems to view these attempts to understand the untoward symptoms as unhealthy but my attitude is that I want to try and make some kind of lemonade out of my lemons.

It is hard enough coping with invisible disease processes even if we have wise doctors who we feel are doing their utmost for us. But having a neurologist who dismisses everything numb as “negative symptoms” she can’t help me with and everything else as stuff I should just adapt to or mask is doing my head in.

She seems to think that as it is ONLY affecting my small nerve fibres everywhere - I should just try to ignore it or mask it with pain drugs. When I tried to explain that Amitriptyline worsened my Sicca as well as causing severe palpitations during the 3 years I was on it for -  she shrugged and said “well then you should just use more eye drops and saliva stimulants and palpitations won’t kill you - they are just ectopic beats!”. This lack of empathy or recognition of how severely SFN and autonomic neuropathy can impact on our lives means that I’ve lost all faith in her and an put off reporting new or worsening symptoms to any doctors now. For a few years I’ve been struggling with chronic constipation and a numb face and severe pins and needles in my nostrils, lips and gums with very  altered taste. I can’t be around moving vehicles or cross roads safely as I can’t turn my head without losing my balance. This impacts on my ability to earn - and consequently we are struggling all the time financially. If doctors can’t help us with our symptoms then they need to acknowledge this rather than imply we are overthinking them and making too much of them. They wouldn’t tell someone who has severely eroded joints from RA that they shouldn’t report new pain and should just put up with it. Degeneration of any condition should at least be recognised.

This doesn’t seem right to me - that doctors don’t at least try to understand the impact these conditions have on our lives and keep pushing for treatments that may halt the progress?
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Carolina

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Re: “mild ataxia on knee heel testing” anyone?
« Reply #3 on: February 08, 2018, 06:09:49 AM »
HEIGHTENED HEALTH AWARENESS!???

OMG, you can see, MAT51, how outraged that makes me.  I'm sure your physician means that in a cruel and negative way.  He/she is so wrong and awful and horrible and cruel.  It is a euphemism for neurotic I am sure.

Of course we have 'heightened health awareness'!  Who wouldn't, considering both how exhausting and scary our health issues our, and how often we are dismissed or worse, mis-diagnosed.  The number of things I've been told to do, or take, which were all wrong for my conditions is legion.  It was only very late in life that I was given a major, fairly rare, diagnosis which pulled everything together for me.  I would like to smack every doctor I every had who dismissed me, patronized me, or otherwise mistreated me.

Ok, enough for now.  But really.....

Also, most of the doctors we see, have no impact on finding the treatments that will, some day, help us.  That is the purview of research scientists, no the ordinary garden-variety doctor, who often knows very little real science, often has huge gaps in what they do know, and in no way affects the research end of science. 
My husband was a research scientist in a Medical Center (transplantation immunology) and taught medical students for 25 years.  He know that as a rule, medical students have zero curiosity.  They just want to know what will be on the next exam and how to graduate and begin practicing.

In this country most doctors learn what they 'know' about new medical treatments from the sales representatives from the major drug companies, who wine and dine the doctors to encourage them to prescribe their products.

It is next to criminal, actually.

Hugs,  Elaine

GRRRR.

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MAT51

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Re: “mild ataxia on knee heel testing” anyone?
« Reply #4 on: February 23, 2018, 03:05:14 PM »
Elaine I’m sorry - I somehow never saw your lovely, indignant response - or read it and forgot to reply.

I’ve written a letter of complaint to my neurologist and copied my rheumatologist and vascular doctor and GP in.

I’ve actually been horribly unwell ever since a cold virus in early January. This woman’s letter expressing her concerns over my “heightened health awareness” caused me deep distress that even writing to her hasn’t mitigated. I guess these things go right back to parents or other significant others minimising or belittling our problems. If we have invisible conditions then it’s all too easy.

But despite worsening tremors and problems with mobility and critically low BP during the nights - plus new diagnosis of asthma and pulsatile tinitus to join the fray - I do feel that this letter pushed me into such a tight corner that it’s unwittingly galvanised my other doctors to take my problems more seriously. And even though they aren’t offering me any further treatments - and are claiming that there aren’t any for my SFN or autonomic dysfunction - at least I know that what is happening to me is real, I’m believed and, when the time comes I will take my revenge on this neurologist come heck or high water. By not replying to my letter of complaint she’s digging a nasty unprofessional hole for herself! Xx
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!