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plgerrard
01-02-2009, 08:32 AM
I am new to this forum, and wish I had taken the time to find it several years ago. I have dealt with small-fiber peripheral neuropathy for 5 years now, but the last year I have been on a down hill slide. I have developed paresthesia meralgia and lower back pain. My ability to focus, concentrate and remember has gone straight down hill, and I am constantly tired. I have had NCS/EMG and several MRI’s done and have been told they are normal.

I have started to gather copies of all my medical records and would like help understanding the MRI’s and NCS/EMG – particularly why they are considered normal. In addition I have recently completed Autonomic Testing, and would like help in understanding those results. Since there are several tests, I will only use excerpts of the questions I have, but it will still be lengthy.

All help will be very much appreciated.

MRI Lumbar Spine:
There is mild disc desiccation at each level. Mild facet arthropathy predominantly L3/4 through L5/S1. No significant disc herniation, central spinal stenosis, or neural foraminal stenosis. Impression: Mild degenerative disc disease and facet arthropathy but otherwise negative.
MRI Cervical Spine:
Mild diffuse degenerative changes. C2-C3, unremarkable. C3-C4, mild central protrusion and spurring. C4-C5, some mild central spurring. C5-C6, disc narrowing and broad-based spurring mildly narrowing the canal. C5-C6, minimal disc bulging and spurring. Focal hyperintensity posterior aspect C6, likely hemangioma. C7-T1 is unremarkable. Cord is not enlarged. No mass, no abnormal enhancement. Impression: Mild degenerative changes of the cervical spine. Mild stenosis C5-C6. FC1
MRI Thoracic Spine:
Unremarkable MRI of the thoracic spine.
NCS/EMG:
With stimulation between the first and second toes on the right, the distal plantar sensory response was absent at the ankle. The right lateral femoral cutaneous sensory response is absent. Impression: The results of the right lower extremity nerve conduction studies are consistent with the presence of a severe distal sensory axonal polyneuropathy. In addition to the distal sensory changes, the right lateral femoral cutaneous sensory response is absent, consistent with focal involvement of that sensory nerve.
Autonomic Testing:
Supine resting baseline pre-tilt systolic, mean, and diastolic blood pressures were 147, 107 and 84 mmHg respectively. Resting heart rate was 75 beats per minute. With the onset of head-up tilt compared to the baseline, systolic blood pressure was decreased by 54 mmHg. Mean blood pressures were decreased 41 mmHg and diastolic blood pressure was decreased by 32 mmHg. After this initial fall in blood pressure, there were no significant changes in the blood pressure during the remainder of the tilt time. The normal increase in the heart rate was blunted during the tilt time.
The right anterior cerebral artery baseline resting velocity was 42 cm per second with a pulsatility index of 1.1. The left was 18 cm per second with a pulsatility index of 1.7. During the right rate response to deep breathing test, there were no significant changes in these parameters on the right, but the velocity was transiently significantly decreased on the left with each episode. During the Valsalva maneuver, there were no significant changes on the right during the first two maneuvers, but the velocity was significantly decreased during the third maneuver transiently. During the head-up tilt study, the velocity was transiently decreased on the right and persistently severely decreased on the left. Two microemboli were detected in the right anterior cerebral artery during the third Valsalva maneuver.
Summary:
1. The quantitative pseudomotor axon reflex study is abnormal, consistent with the presence of a length-dependent postganglionic small fiber sympathetic neuropathy.

2. The Valsalva ratio was abnormal consistent with the presence of abnormal cardiovagal function. The heart rate response to deep breathing was normal.

3. The mean blood pressure changes recorded during the Valsalva maneuver were abnormal, consistent with the presence of abnormal peripheral vasoconstriction.

4. The head-up tilt study is abnormal, consistent with the presence of transient, early, symptomatic orthostatic hypotension. The increase in the heart rate that is usually associated with the head-up tilt position was blunted, consistent with the presence of abnormal sympathetic activation of the heart. There is no evidence of the presence of postural orthostatic tachycardia syndrome.

5. The transcranial Doppler studies were bilaterally abnormal during testing with mild transient changes on the right and severe persistent changes on the left. Two microemboli were detected in the right anterior cerebral artery during the third Valsalva maneuver, which would not be considered to be of any clinical significance.

6. Using the Mayo Clinic composite autonomic index score, the patient’s scores were 3 for pseudomotor, 1 for cardiovagal, and 2 for adrenergic function for a total score of 6. A score of 6 is associated with the presence of moderately decreased generalized autonomic function.


Thanks in advance for any and all help.

Naominjw
01-02-2009, 12:45 PM
I can't "help." But, I wanted to say hello. My daughter was, at one time diagnosed with about 15 different things. One doctor commented that it meant that the doctors don't really know what is going on. But one thing the psychiatrist felt so sure of was the diagnosis of severe menal illness. Yet all symptoms of that went away when we dug deep and started addressing at least what we could.

Sometimes there is some underlying pathologies causing a cascade of problems throughout the body (and brain). She had some mitochondrial dysfunction, and food sensitivities we found after she was found to have osteoporosis... the doctor then discovered intestinal malabsorption and from there, we found the food problems, including gluten. She also had multiple hormonal problems.

She had spinal degeneration (we are talking about a person who was still in her teens!) dizziness, met criteria for fibromyalgia and chronic fatigue, had intermittenet numbness and tingling and BURNING pain in her skin in extremities, intestinal problems, she often needed assistance walking... and more.

Anyway... what got addressed was a multitude of things we could address. We got her nutritional genetic testing (you can get that ordered via the Internet, although doctors can order some of it --such as MTHFR--through regular labs. Sleep studies, got her on hormones, nutritional supplements that help mitochondrial function, sleep, etc.... and She got on a whole foods diet.

I know this is going to sound weird because it is a resource on www.ItsNotMental.com for children with "mental" issues, but these resources are the type that helped my daughter be the healthy person she is today at 21. http://itsnotmental.blogspot.com/2008/03/important-links-to-help-our-children.html

Let me put it this way. She had a service dog for years, and the dog was recently retired --is now just a pet-- because she had no work left to do!

You were at Mayo clinic? That is great. I always wondered how much better sooner my daughter might have been if she had the integrated treatment that Mayo provides instead of the piecemeal treatment she got (and no treatment at time) from the local university hospital. It took several neurologists, several GPs, several endocrinologists to help her, and years to find them all.

plgerrard
01-02-2009, 05:49 PM
I really like the concept of ItsNotMental. It's funny you suggest that. My doctor finally ordered the Autonomic Testing when I told her, if something didn't change I was going to need referral to a psychiatrist. I've never been a depressive person, but the last year has about taken it all out of me.

No, I didn't go to Mayo - that is simply the scoring methodology that was used in the test. I'm too far from any of Mayo's clinics, but I think that would be great as well.

I was recently hospitalized, when I went to the ER with hives and difficulty breathing. Since I have allergies to shellfish, I recognized the signs as an allergic reaction, but while in the ER, the ECG came back abnormal, so I was checked me into the cardiac care unit. I was there 5 days, and started to feel like one of House's patients - each day was a different symptom, but all heart and lung tests came back normal. By the 4th day, they started me back on prednisone and things returned to normal (at least for me). I was finally released after 5 days (much to the relief of the nursing staff) with a prescription of prednisone, and no diagnosis.

Thanks again for the pick-me-up. You really did 'help'

cwendyhawk
01-08-2009, 12:35 AM
Girl.....go to a chiropractor. Numbess problems that docs can't give you the answers for usually is either heavy metal toxicity or your spine is mislaigned.......since you are having heart related issues as well...that screams that you need to go to a chiropractor......quit wasting your time and effort on docs.......that can't help you. Go find a chiro (a good chiro)...and get some X-rays done. You can even search on the Internet about all the problems that can be caused when your spine is misaligned.......subluxations cause eveything .....I've had a heart attack before.....but for all those years when I was having heart pain.......they said I was just a head case.....now my EKG is messed up....was perfectly normal before......you may have heavy metals too......if your chiropractor is worth his spit.......he will check you for heavy metals too........so find one that repeats wellness and all the jazz over and over again........they may seem nuts......but they aren't. The regular docs are the nuts for pushing surgery and pills on the population rather than investing their time in learning about the spine......

Anyway......save your frusturation/time/and money. I know all about getting this test and that test and chasing answers........a good chiro can fix you........not just help you.....fix you.....

An yeah......about 70% of my body is numb because my neuro....said I was nuts and there wasn't nothing wrong with me and that was around 2 years ago.....and I've learned about a year ago or so that I have severe heavy metal and my spine is misaligned.....my head is like way to foward....and I have no curve in neck (is stiff like a boad)...and the bone that connects my neck and my skull is flat.....is suppossed to be at a angle becayse if you ever messed with one of those platic skeletons you can easily see that if it is flat...then it is putting pressure on the spine........did they catch that on the MRI......heck no.......I was atrophying at the time I was seeing my neuro and begging him to do something since I could visually see my muscles starting to wast away....did he do anything other than label me a head case.....no. Since going to the chiro.....some of my numbness has gone away in my toungeue....half my pain has gone away........and my kidneys and heart doesn't heart so much.......the damage though may be permanent because nothing was done when it shoulld have been done.....though I still have a whole heck of alot of heavy metals to get out.........but chiro......look on the web.......research them.......they aren't quacks.......just find a good one....and make him show you X-rays of patients that he has fixed before......the before....the midway through....and the after.......(they take the names off X-rays......so you can't see who they were...).......usually it is free consultation or real cheap consultations too......and then you can see what they have to say and run if you don't like it....I just wish I hadn't wasted all those years .........for nothing ......


I am new to this forum, and wish I had taken the time to find it several years ago. I have dealt with small-fiber peripheral neuropathy for 5 years now, but the last year I have been on a down hill slide. I have developed paresthesia meralgia and lower back pain. My ability to focus, concentrate and remember has gone straight down hill, and I am constantly tired. I have had NCS/EMG and several MRI’s done and have been told they are normal.

I have started to gather copies of all my medical records and would like help understanding the MRI’s and NCS/EMG – particularly why they are considered normal. In addition I have recently completed Autonomic Testing, and would like help in understanding those results. Since there are several tests, I will only use excerpts of the questions I have, but it will still be lengthy.

All help will be very much appreciated.

MRI Lumbar Spine:
There is mild disc desiccation at each level. Mild facet arthropathy predominantly L3/4 through L5/S1. No significant disc herniation, central spinal stenosis, or neural foraminal stenosis. Impression: Mild degenerative disc disease and facet arthropathy but otherwise negative.
MRI Cervical Spine:
Mild diffuse degenerative changes. C2-C3, unremarkable. C3-C4, mild central protrusion and spurring. C4-C5, some mild central spurring. C5-C6, disc narrowing and broad-based spurring mildly narrowing the canal. C5-C6, minimal disc bulging and spurring. Focal hyperintensity posterior aspect C6, likely hemangioma. C7-T1 is unremarkable. Cord is not enlarged. No mass, no abnormal enhancement. Impression: Mild degenerative changes of the cervical spine. Mild stenosis C5-C6. FC1
MRI Thoracic Spine:
Unremarkable MRI of the thoracic spine.
NCS/EMG:
With stimulation between the first and second toes on the right, the distal plantar sensory response was absent at the ankle. The right lateral femoral cutaneous sensory response is absent. Impression: The results of the right lower extremity nerve conduction studies are consistent with the presence of a severe distal sensory axonal polyneuropathy. In addition to the distal sensory changes, the right lateral femoral cutaneous sensory response is absent, consistent with focal involvement of that sensory nerve.
Autonomic Testing:
Supine resting baseline pre-tilt systolic, mean, and diastolic blood pressures were 147, 107 and 84 mmHg respectively. Resting heart rate was 75 beats per minute. With the onset of head-up tilt compared to the baseline, systolic blood pressure was decreased by 54 mmHg. Mean blood pressures were decreased 41 mmHg and diastolic blood pressure was decreased by 32 mmHg. After this initial fall in blood pressure, there were no significant changes in the blood pressure during the remainder of the tilt time. The normal increase in the heart rate was blunted during the tilt time.
The right anterior cerebral artery baseline resting velocity was 42 cm per second with a pulsatility index of 1.1. The left was 18 cm per second with a pulsatility index of 1.7. During the right rate response to deep breathing test, there were no significant changes in these parameters on the right, but the velocity was transiently significantly decreased on the left with each episode. During the Valsalva maneuver, there were no significant changes on the right during the first two maneuvers, but the velocity was significantly decreased during the third maneuver transiently. During the head-up tilt study, the velocity was transiently decreased on the right and persistently severely decreased on the left. Two microemboli were detected in the right anterior cerebral artery during the third Valsalva maneuver.
Summary:
1. The quantitative pseudomotor axon reflex study is abnormal, consistent with the presence of a length-dependent postganglionic small fiber sympathetic neuropathy.

2. The Valsalva ratio was abnormal consistent with the presence of abnormal cardiovagal function. The heart rate response to deep breathing was normal.

3. The mean blood pressure changes recorded during the Valsalva maneuver were abnormal, consistent with the presence of abnormal peripheral vasoconstriction.

4. The head-up tilt study is abnormal, consistent with the presence of transient, early, symptomatic orthostatic hypotension. The increase in the heart rate that is usually associated with the head-up tilt position was blunted, consistent with the presence of abnormal sympathetic activation of the heart. There is no evidence of the presence of postural orthostatic tachycardia syndrome.

5. The transcranial Doppler studies were bilaterally abnormal during testing with mild transient changes on the right and severe persistent changes on the left. Two microemboli were detected in the right anterior cerebral artery during the third Valsalva maneuver, which would not be considered to be of any clinical significance.

6. Using the Mayo Clinic composite autonomic index score, the patient’s scores were 3 for pseudomotor, 1 for cardiovagal, and 2 for adrenergic function for a total score of 6. A score of 6 is associated with the presence of moderately decreased generalized autonomic function.


Thanks in advance for any and all help.

plgerrard
01-08-2009, 07:36 AM
cwendyhawk:

Thanks for the advice. It actually helps firm up a decision I've been trying to make. I heard of a branch of chiropractic medicine that I think would be perfect - Neurological chiropractors. They have an additional 3 years of schooling in neurologic disorders. The only problem is that the closest one to my home is over 100 miles away.

You've just helped me decide that it will be worth going the 100 miles to see him.

(If anyone else is interested in checking them out, they can be found at acnb.org)

Thanks again.

anwise67
01-08-2009, 09:13 PM
hello. I suffer from small fiber neuropathy also. I have had it since January of 2005. I aquired this illness as a result of my occupation as a chemist(handled a lot of organic solvents and heavy metals). I had the epidermal skin biopsy in November of 2007 that confirmed the dx. I got the run-around from many doctors and then I found the neurologists that gave me the time of day and understood this disease. The most important thing you can do is listen to your body. I went through the self doubt also and even though the results of the biopsy were not good, at least I had a name for what had been consuming my life for two years. I also have heart issues. I have had PAC's (pre-atrial contractions) so numerous in one day that I couldn't catch my breath. I have also dealt with tachycardia and other rhythm probs. I currently take verapamil for the heart; Lyrica, trileptal, and nortriptyline for the neuropathy; and darvacet for break through pain. I hate to see anybody with this disease but it helps to talk to people that can understand what you are going through. allie

plgerrard
01-09-2009, 06:24 AM
Allie: Thanks for your encouraging words.

You are so right - it does help to talk to people who know. I've only just joined the board, after 4 years of dealing with this alone. It is really hard for friends and family to understand the bad days. It's that "but you don't look sick" syndrome.

Neurologists are another matter. I had a really good neurologist at Vanderbilt. He encouraged me to do my own research, and when I came back with an article I found on the internet, he was willing to request the needed test, or prescribe the meds. And, since I lived 200 miles from Vandy, he even corresponded with me by email. He left 3/07 to take a position in a different state. Since that time, I've been through 2 neurologists that disdain patients who use the internet, and want me to just accept my lot in life. The funny thing is that my first neuro was in his late 50's, early 60's. The 2 since that time have been in their 30's. You would think they would more progressive.

I'm still determined to find the underlying cause, and at least stop the progression. My neuro wouldn't even send me for autonomic testing when I requested, it was my internist that reviewed the information I found, and requested the test. She has told me that the results show I have autonomic dysfunction, and has sent back to the neuro for recommendations on additional tests and/or treatment. So, I've hit the internet again, and am armed with questions, when I see him Monday. Wish me luck. Without it, I'll be looking for yet another neuro.

anwise67
01-09-2009, 09:52 PM
Have you had the epidermal biopsy? That biopsy can sometimes lead to other dx's besides SFN. I had a tilt table test a year before the numbness started and it showed that there was dysautonomia. In the beginning when the numbness and paresthesias started i was told that I'd (age 38) had a stroke. It does help to have answers b/c you can take your life off of hold. My neurologist is in his 30's but he understood my need to know and did the biopsy on my first visit. I have to drive 5 hours one way to an appt. but they also will talk to me on the phone. The one before him wanted to take a wait and see approach every 6 months. I was armed with much info. from the web and my neuro took it in stride but some are offended by the research we do. I wish you well at your next appt. allie