[Neuroproblem]

After my sensational loss of neuropathy started in janurary, it has never completely recovered, so my neuropathy have definitely taken a life of its own: switching from pins and needles, to prickling, tickling, stinging pain, joint pain, some intermittent burning pain. loss of smell is still present.
The visual snow i described was like a transluscent smoke, is being explained away by the neuro as being part of the migraine aura, and she came to conclusion that my neuropathy is also part of the migraine. I dispute it, because migraines includes headaches, yet i never had any headaches at all, nor do i know how a migraine feels like and i never experienced one before. It cannot account for neuropathy and loss of sensations.

So the loss of smell, yet again is begin dismissed as nothing more than related to allergies, so a ENT is scheduled 2 months from now. I dispute this as well, i had never loss my smell due to allergies or the cold, and it is too coincidental with the sudden appearance of the neuropathy to let go.
If i said i dint smell anything on "the coffee smell test", i probably wouldve been taken more seriously. In the ER(januarary), they checked up my nose and dint think anything is wrong.

After all this, its less likely i will be given another Neuro consult again.
I already been to specialist in the past few months.
april 30th(opthamologist),tuesday(another eye exam,peripheral vision), today is the neuro.

They suggested blood test for more deficiencies(dont know what kind), as well as t3, glucose test, but i had thyroid and glucose done in the past(2013, with kaiser), that were normal. I feel like this is just wasting my time, as i am getting the run around. In addition, since i do not have direct access to test results, i usually find out the test results months later. Like when i did vit d test, which i only found out 5 months after the tests, and b12 which was done in feb, i find out 3 months later. Because only the doctors are able to give me the results when i see them. In order for me to have actual copies i will have to physically pay the medical records to be printed, and my tests results.

twitching is quite frequent as well.
The usual basic neuro tests were done, all fine.
Should i expect anything different, from the tests if i do them.

[Healthgirl]

Originally Posted by Neuroproblem

After my sensational loss of neuropathy started in janurary, it has never completely recovered, so my neuropathy have definitely taken a life of its own: switching from pins and needles, to prickling, tickling, stinging pain, joint pain, some intermittent burning pain. loss of smell is still present.
The visual snow i described was like a transluscent smoke, is being explained away by the neuro as being part of the migraine aura, and she came to conclusion that my neuropathy is also part of the migraine. I dispute it, because migraines includes headaches, yet i never had any headaches at all, nor do i know how a migraine feels like and i never experienced one before. It cannot account for neuropathy and loss of sensations.

So the loss of smell, yet again is begin dismissed as nothing more than related to allergies, so a ENT is scheduled 2 months from now. I dispute this as well, i had never loss my smell due to allergies or the cold, and it is too coincidental with the sudden appearance of the neuropathy to let go.
If i said i dint smell anything on "the coffee smell test", i probably wouldve been taken more seriously. In the ER(januarary), they checked up my nose and dint think anything is wrong.

After all this, its less likely i will be given another Neuro consult again.
I already been to specialist in the past few months.
april 30th(opthamologist),tuesday(another eye exam,peripheral vision), today is the neuro.

They suggested blood test for more deficiencies(dont know what kind), as well as t3, glucose test, but i had thyroid and glucose done in the past(2013, with kaiser), that were normal. I feel like this is just wasting my time, as i am getting the run around. In addition, since i do not have direct access to test results, i usually find out the test results months later. Like when i did vit d test, which i only found out 5 months after the tests, and b12 which was done in feb, i find out 3 months later. Because only the doctors are able to give me the results when i see them. In order for me to have actual copies i will have to physically pay the medical records to be printed, and my tests results.

twitching is quite frequent as well.
The usual basic neuro tests were done, all fine.
Should i expect anything different, from the tests if i do them.

I'm sorry if this was answered already- did you have a skin biopsy yet?

Also, every symptom you have including the smoke vision, I also have. The difference is my sense of smell is almost disturbingly heightened. I have no doubt the nerve damage is affecting the senses in every way. Especially for those of us who do have migraines, ocular migraines, neurpathy in the face. The doctors just don't know yet.

[madisongrrl]

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.

[Neuroproblem]

Originally Posted by madisongrrl

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.

[Lara]

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

[janieg]

Originally Posted by Neuroproblem

The visual snow i described was like a transluscent smoke, is being explained away by the neuro as being part of the migraine aura, and she came to conclusion that my neuropathy is also part of the migraine. I dispute it, because migraines includes headaches, yet i never had any headaches at all, nor do i know how a migraine feels like and i never experienced one before.

That's interesting. I started getting ocular migraines several years ago. I can get three in one month, and then go several months without having one. It's been so long since I've had one now, I'd completely forgotten about it. There is no headache associated with mine...just visual disturbance and maybe a little brain fog.

Seemingly good read here on migraine disorders:

http://www.migrainedisorders.org/50-...of-migraine-2/

"Migraine Disorder is a new, descriptive term intended to include a currently disparate group of medical symptoms and conditions which might have a common pathophysiologic etiology. The unifying idea is that there are a number of complaints that are related to a malfunction, or hypersensitivity of the sensory and autonomic nervous system in these people. Furthermore, there appears to be a common genetic influence in this neuropathy. The link to migraine is strengthened in patients who have a history of one or more of the three most common symptoms of a migraineur: recurrent intense headaches, odd transient ocular symptoms (random white spots, zigzags, loss of vision, or blurring and motion intolerance (car sickness). In each of these conditions a person with this defective nervous system have a hypersensitive pain, visual or balance system. Another common theme among people with a migraine disorders is that hormonal fluctuations aggravate the defective nervous system."

[Neuroproblem]

Seemingly good read here on migraine disorders:

http://www.migrainedisorders.org/50-...of-migraine-2/

"Migraine Disorder is a new, descriptive term intended to include a currently disparate group of medical symptoms and conditions which might have a common pathophysiologic etiology. The unifying idea is that there are a number of complaints that are related to a malfunction, or hypersensitivity of the sensory and autonomic nervous system in these people. Furthermore, there appears to be a common genetic influence in this neuropathy. The link to migraine is strengthened in patients who have a history of one or more of the three most common symptoms of a migraineur: recurrent intense headaches, odd transient ocular symptoms (random white spots, zigzags, loss of vision, or blurring and motion intolerance (car sickness).he three most common symptoms of a migraineur: recurrent intense headaches, odd transient ocular symptoms (random white spots, zigzags, loss of vision, or blurring and motion intolerance (car sickness).he three most common symptoms of a migraineur: recurrent intense headaches, odd transient ocular symptoms (random white spots, zigzags, loss of vision, or blurring and motion intolerance (car sickness). In each of these conditions a person with this defective nervous system have a hypersensitive pain, visual or balance system. Another common theme among people with a migraine disorders is that hormonal fluctuations aggravate the defective nervous system."[/QUOTE]

i FORgot to mention, the neuro asked me about recurrent intense headaches, odd transient ocular symptoms (random white spots, zigzags, loss of vision, or blurring and motion intolerance (car sickness).[B]
I never experience any migraine symptoms before. The ENT appt, alone is enough to tell me that they dont think its neurolgical in order and have dismissed my neuropathy as nothing more than, making it up. I also doubt my allergies could cause my loss of smell like this.

[mrsD]

I have had ocular migraines for many years. The first diagnosis was when I had a retinal angiogram... (I had a blind spot from a airplane trip)...the doctor said it was a ocular migraine.

I don't get headaches very often. I've only had one migraine and that was when I was pregnant over 30 yrs ago.

But I still get ocular migraines--with the visual auras. They tend to come if I use Zantac. So I avoid that drug. I don't get them from cimetidine (which is also an H2 blocker). So that is rather a mystery. Mine typically start as a spiral in the center of my vision, of a diamond shaped design, which grows wider and wider , and eventually leaves my central vision and disappears.

I've only had 4 or 5 of the auras during my whole lifetime though so I don't consider it a common event.

Anyone with visual snow or disturbances in circulation should be taking B12 and folate to support the blood vessels in the retina.
Getting a homocysteine blood test may show elevations which damage the tiny vessels in the retina and brain. Often blood vessel damage shows up first in the eye.

[Neuroproblem]

Originally Posted by mrsD

I have had ocular migraines for many years. The first diagnosis was when I had a retinal angiogram... (I had a blind spot from a airplane trip)...the doctor said it was a ocular migraine.

I don't get headaches very often. I've only had one migraine and that was when I was pregnant over 30 yrs ago.

But I still get ocular migraines--with the visual auras. They tend to come if I use Zantac. So I avoid that drug. I don't get them from cimetidine (which is also an H2 blocker). So that is rather a mystery. Mine typically start as a spiral in the center of my vision, of a diamond shaped design, which grows wider and wider , and eventually leaves my central vision and disappears.

I've only had 4 or 5 of the auras during my whole lifetime though so I don't consider it a common event.

Anyone with visual snow or disturbances in circulation should be taking B12 and folate to support the blood vessels in the retina.
Getting a homocysteine blood test may show elevations which damage the tiny vessels in the retina and brain. Often blood vessel damage shows up first in the eye.

I never had auras before, only if i stare a the bright screen too long, though it doesnt last long(i doubt these are migraines). My b12 were normal, according to the neuro, and of course i dont have the results, so im just taking thier word for it.
I already have a feeling that ENT appt in 2 months will be nothing more than, "there is nothing wrong". explaining my neuropathy to the ent will be kinda of useless, as they dont focus in that area. i Feel like i give them too much details about my symptoms, so they will dismiss what i think its wrong. Ever since they got hold of my kaiser records, i met increasing resistance from the docs. the neuro was more interested in my dysguesia(phantom bitter taste), and my vague stomach issue. I kept trying to explain the neuropathies, ive been having, but its a no go. She basically have the same opinion as my PCP, whom i saw a few months ago.

You would think the neuro would be curious if you said "sudden loss of smell and taste", she dint even bat an eye, and claims it is allergies. During the time i lost my smell, my nose were free of allergies because of the effects of the antihistamine, which also dried out my nose and reduced secretions.
ever since i left the neuro office, i had this nagging feeling that, what she said wasn't coinciding with my symptoms at all. I did forget to mention i had burning sensations(left collarbone area, and right hand), and extreme sensitivity to touch on my right arm.

i SHOuldve said the pins and needles and other flavours of the neuropathy, affected my whole hand, limbs, but at that time it only affected part of it. but now its all over my hand, and left side of the face. I also get tingling on the top of my head as well.

[Healthgirl]

Originally Posted by Lara

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.