Reply
 
Thread Tools Display Modes
Old 06-13-2015, 11:06 AM #1
madisongrrl's Avatar
madisongrrl madisongrrl is offline
Member
 
Join Date: Jul 2014
Location: Midwest
Posts: 584
10 yr Member
madisongrrl madisongrrl is offline
Member
madisongrrl's Avatar
 
Join Date: Jul 2014
Location: Midwest
Posts: 584
10 yr Member
Default

I think getting a skin biopsy is probably the last thing left to cross off your list.

I went through several months of not being able to see well too - the opthamalogist could find nothing wrong. If you've had a MRI to rule out MS and don't have any obvious motor deficits, doctors don't generally seem to dig deeper to figure this out.

I went to the ENT as well. It was a pretty useless trip for 800 bucks it cost to to have him prescribe vestibular rehab to me for my disequilibrium and give me a wastebasket diagnosis. The ENTs look at the nueros for answers and the neuros look back at the ENTs. It's very frustrating when you find yourself in this place.

Besides having burning all over my body, face, back of neck and head, I have symptoms behind and in my left eye, in my jaw, on the left side of my throat and now (this week) it has moved into the left side of my nasal cavity. At the onset of my symptoms, my experience was the opposite of yours, I was hypersensitive to smells. Even that clean laundry detergent smell you have when you put on freshly washed clothes made me want to throw up.

My new primary says that sometimes these things are not well defined or characterized. And as much as that ticks me off, she is very much correct because there is no way to test for this stuff. It could just be strange symptoms of SFN. However, something caused this. I hope you do find someone who cares enough to find a cause.
madisongrrl is offline   Reply With QuoteReply With Quote
Old 06-14-2015, 03:55 AM #2
Neuroproblem Neuroproblem is offline
Member
 
Join Date: Feb 2015
Posts: 355
10 yr Member
Neuroproblem Neuroproblem is offline
Member
 
Join Date: Feb 2015
Posts: 355
10 yr Member
Default

Quote:
Originally Posted by madisongrrl View Post
I think getting a skin biopsy is probably the last thing left to cross off your list.

I went through several months of not being able to see well too - the opthamalogist could find nothing wrong. If you've had a MRI to rule out MS and don't have any obvious motor deficits, doctors don't generally seem to dig deeper to figure this out.

I went to the ENT as well. It was a pretty useless trip for 800 bucks it cost to to have him prescribe vestibular rehab to me for my disequilibrium and give me a wastebasket diagnosis. The ENTs look at the nueros for answers and the neuros look back at the ENTs. It's very frustrating when you find yourself in this place.

Besides having burning all over my body, face, back of neck and head, I have symptoms behind and in my left eye, in my jaw, on the left side of my throat and now (this week) it has moved into the left side of my nasal cavity. At the onset of my symptoms, my experience was the opposite of yours, I was hypersensitive to smells. Even that clean laundry detergent smell you have when you put on freshly washed clothes made me want to throw up.

My new primary says that sometimes these things are not well defined or characterized. And as much as that ticks me off, she is very much correct because there is no way to test for this stuff. It could just be strange symptoms of SFN. However, something caused this. I hope you do find someone who cares enough to find a cause.
I have always though migraines are intermittent and specific triggers, and not constant like all the time. thats why i dispute migraines, and i had headaches only a few times in my life, 1 time from food posioning few years back, and excrutiating neuralgia from a tooth infection.

I did have an MRI back in 2013, for another reason, ENT(kaiser) wanted to see if what was causing my tinnitus in my right ear(i suspect she was looking for vestibular shwannoma) and said it was normal.
I forgot to mention to them, there was burning neuropathy sensations(shouldve mentioned it), because this is indicative of diabetic neuropathy. the burning is actually on my collarbone left side, and my right hand.
i was never checked for MS in the MRI, but i think the neuro yesterday did a physical Neuro test, to see if i had MS symptoms:vision lost, color change etc. She basically did what my kaiser neuro did back in 2013.

The coffee smell test, i experience was very weak, it was weak on my left nostril, and even weaker on my right nostril. deviated septum makes it worst though.
Im pretty sure everyone here has thier neuropathy as constant, and waxes and wanes.
My pins and needles with the other sensations are always here, never going away.
perhaps if told them i had burning sensations they would asked more questions.

I dont know if its possible to get a skin biopsy, i dont know how normal is that for a "Medi-cal" patient.
my neuropathy alternate between different flavors: pins and needles, prickling,tickling, stinging, jabs of pain, joint pain, weakness twitching.
the neuropathy is much more intense on my left side of the body, then the right, but i suspect the right has PN as well, but the loss of sensations is more pronounced. I HAVNT seen anyone that have loss of sensation of their intestines,bladder or stomach, except for those who have diabetes or dysautonomia, which would also include inability to control those organs.

ENt visit is in 2 months, here another long wait. Im getting frustated and tired of this, i dont blame the specialists, only if they dont believe what i have, or try to put it off as depression or anxiety.

the pins and needle is like wearing spider silk gloves, that is gently wrapped around your fingers.
It SEEMS a skin biopsy is neccessary for certain sfn.
the extra lab tests are iron, lead, and something else, but no Vitamin deficiencies. besides the b12 and vit d was tested a while back.
My neuropathy also includes pain, but not as severe as the people described on this site.
Neuroproblem is offline   Reply With QuoteReply With Quote
Old 06-14-2015, 04:22 AM #3
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Posts: 11,026
15 yr Member
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Posts: 11,026
15 yr Member
Default Migraines without headache

fyi

Hello Neuroproblem,
regarding what you've said a couple of times about not having a migraine because you don't get a headache -

Not everyone who has migraines gets the headache. Just letting you know.

Silent Migraines
Migraine FAQs: What are symptoms of silent migraines?

https://en.wikipedia.org/wiki/Acephalgic_migraine
"Acephalgic migraine (also called acephalalgic migraine, migraine aura without headache, amigrainous migraine, isolated visual migraine and optical migraine) is a neurological syndrome"

http://www.brighamandwomens.org/Depa...lMigraine.aspx
Visual Migraine
Lara is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (06-23-2015), zkrp01 (06-14-2015)
Old 06-16-2015, 06:58 AM #4
Healthgirl Healthgirl is offline
Member
 
Join Date: Dec 2014
Posts: 791
10 yr Member
Healthgirl Healthgirl is offline
Member
 
Join Date: Dec 2014
Posts: 791
10 yr Member
Default

Quote:
Originally Posted by Lara View Post
fyi

Hello Neuroproblem,
regarding what you've said a couple of times about not having a migraine because you don't get a headache -

Not everyone who has migraines gets the headache. Just letting you know.

Silent Migraines
Migraine FAQs: What are symptoms of silent migraines?

https://en.wikipedia.org/wiki/Acephalgic_migraine
"Acephalgic migraine (also called acephalalgic migraine, migraine aura without headache, amigrainous migraine, isolated visual migraine and optical migraine) is a neurological syndrome"

http://www.brighamandwomens.org/Depa...lMigraine.aspx
Visual Migraine
Yup, I get all of these. It all came on as the neuropathy crept in. Just wish there was a way to figure it out.
Healthgirl is offline   Reply With QuoteReply With Quote
Old 06-18-2015, 03:48 AM #5
Neuroproblem Neuroproblem is offline
Member
 
Join Date: Feb 2015
Posts: 355
10 yr Member
Neuroproblem Neuroproblem is offline
Member
 
Join Date: Feb 2015
Posts: 355
10 yr Member
Default

Quote:
Originally Posted by Healthgirl View Post
Yup, I get all of these. It all came on as the neuropathy crept in. Just wish there was a way to figure it out.
i dont get silent migraines though, all the symptoms do not match what im experiencing right now. the PN is more pronounced in my left side, but also in my right side. iT DOESnt account for loss of smell, and loss of sensations, my right leg and arms feel weightless most of the time. Doesnt account for the uncontrollable jerks that started in janaurary, though it never had an episode after those first few weeks.
Neuroproblem is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
What should I expect from first neuro appt? yeti Multiple Sclerosis 4 07-14-2012 08:47 AM
Going back to work afte 1 year!!! What to expect??? BikeAccident Traumatic Brain Injury and Post Concussion Syndrome 7 02-16-2012 07:17 PM
New Neuro Dr. and Tests - what to expect? sunnydee Peripheral Neuropathy 10 07-17-2009 07:42 PM
went to the neuro today suzyqz_2007 Multiple Sclerosis 10 07-11-2008 07:24 PM
Went to neuro today about MS... sallyb Multiple Sclerosis 14 12-16-2006 10:03 PM


All times are GMT -5. The time now is 04:47 AM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.