[liz_monty2]

First off, I'm SO glad I found this forum! Just reading these posts makes me feel so much better that there are people who understand what I'm going through and that I'm not alone.

Quick background
I'm a 27-year-old mother of two who has been very healthy up until last year. After the birth of my second daughter in April, I lost 40 lb in 6 months without trying (same diet, minimal exercise), which is nothing like after my first pregnancy. In November, I went through severe neck pain and a pounding headache near my left temple (exacerbated with movement), but those symptoms eventually subsided. In the beginning of December, I started having pain in my hands and my feet. At first it was just like occasional painful cramps or shooting pain, but then within two weeks the pain had increased in its frequency, duration, intensity, and location (not just hands and feet but also further up on the arms and legs).

I have been to a family doctor, two internal medicine doctors, a neurologist, and an endocrinologist. They have run the gamut in terms of tests, and they can't find what's causing my symptoms. My Vitamin D was a little low (24.6 ng/mL) and my Vitamin B-12 wasn't clinically low but could be better (487 pg/ml), so I started taking those (5000 IU vitamin D3, 1000 mcg vitamin B-12, and a super B-complex).

One doctor said there are good medications for nerve pain but fatigue is a common side effect, and since I already feel fatigued enough, I don't want to go that route. Right now I just try to keep my mind constantly busy so that I don't notice the pain as much, and when it gets really bad, I take over-the-counter painkillers to take the edge off.

What I'm looking for from this post

• First, it just feels good to get my story out there to people who may understand what I'm going through.
• Second, does anyone have any idea what's going on with me, and why the sudden random peripheral neuropathy (assuming that's what it is)?
• Third, where should I go from here? When I saw the neurologist, it was at the beginning of December when the pain was just starting, so he didn't really look into it that much. I could go to another neurologist (a different one, because the first one was a jerk), but I'm so tired of doctors not knowing (or caring, or believing) what's going on with me.

Peripheral Neuropathy symptoms
Spontaneous burning pain in my fingers, hands, wrists, toes, feet, and ankles
Occasional muscle cramps/contractions in my hands and feet
Sometimes a deep ache in my thigh or upper arm
Tingling in my right index finger
Muscle twitches on occasion (feet, shoulder)
Other random shooting and burning pains, mostly in my arms and legs

Other symptoms
Unexplained weight loss (40 lb in 6 months)
Difficulty keeping my weight (I have to eat a ton or I continue to lose)
Constant low-grade fever (between 99 and 100)
Fatigue (don't have the energy I used to)

Tests and imaging done (with normal results)
Brain MRI, neck MRI, chest X-ray, spinal tap
Basic tests like CMP, CBC, etc.
Endocrinology tests for thyroid, adrenal, and hormonal function
Lyme, EBV, rheumatoid factor
Protein immunoelectrophoresis, protein electrophoresis
Magnesium, Ferritin, Vit D, Vit B12, growth hormone
Others that I can't think of, but ask if you have ideas

Anyway, thanks in advance for reading and replying!

-Liz

[janieg]

Hi Liz,

Welcome to the forum, but sorry you find yourself here. It's not as active as it once was as I think many of us long-time sufferers have just begrudgingly accepted our fate.

Like you, I had a sudden onset five years ago and am "idiopathic." I've had every test under the sun run, most multiple times.

Be it coincidence or not, right after my neuropathy started, I underwent unexplained weight GAIN. Twenty pounds poured on in a flash, and I also developed hypoglycemia. I had to carry around glucose tablets all the time. Long story short, a self-funded genetic test turned up a mutation that I thought might be involved in that. Even though I'm just a carrier of this mutation (the disorder is "Biotinidase Deficiency), when I started supplementing with biotin, my hypoglycemia went away (and the 20 pounds melted off). Unfortunately, it wasn't the solution for my neuropathy that I hoped. My next door neighbor, a retired gyn, is the only doctor who has ventured to say that perhaps living with lower levels of this enzyme for a half-century may have caused nervous system damage, and I've just stopped the process now. My doctors will say nothing about it, nor would the world's foremost expert on the subject comment. He said he's just focused on the full-blown disorder, and had no data on those of us with just clinically low-normal levels of the enzyme.

I tell you all this just because I apparently have metabolic issues that became symptomatic at the same time I developed the neuropathic symptoms. As I was 50 at the time, hormonal changes were taking place as well. Who knows if they played a role in the mess, and you mentioned your problems started after a pregnancy.

The fever you have is worrisome. When you say you were tested for Lyme, did you got to a Lyme Literate Doctor (LLD), or did you just get the standard test? If the latter, you might want to try an LLD for a full work-up. Insurance usually won't cover it, though. Here's where you can find one in your area:

Provider Search - ILADS

Have you taken any genetic tests, even just the ones for ancestry/genealogy? You can get some medical results for those by uploading the raw data to another website. You never know, you might spot something. That's how I discovered my biotinidase issue. If you haven't taken one, you might want to consider the 23andme health test. Or if money isn't an issue, a full exome test like the one offered by Genos - Own your DNA, Learn about Yourself, Drive Research.

Jane

Originally Posted by liz_monty2

First off, I'm SO glad I found this forum! Just reading these posts makes me feel so much better that there are people who understand what I'm going through and that I'm not alone.

Quick background
I'm a 27-year-old mother of two who has been very healthy up until last year. After the birth of my second daughter in April, I lost 40 lb in 6 months without trying (same diet, minimal exercise), which is nothing like after my first pregnancy. In November, I went through severe neck pain and a pounding headache near my left temple (exacerbated with movement), but those symptoms eventually subsided. In the beginning of December, I started having pain in my hands and my feet. At first it was just like occasional painful cramps or shooting pain, but then within two weeks the pain had increased in its frequency, duration, intensity, and location (not just hands and feet but also further up on the arms and legs).

I have been to a family doctor, two internal medicine doctors, a neurologist, and an endocrinologist. They have run the gamut in terms of tests, and they can't find what's causing my symptoms. My Vitamin D was a little low (24.6 ng/mL) and my Vitamin B-12 wasn't clinically low but could be better (487 pg/ml), so I started taking those (5000 IU vitamin D3, 1000 mcg vitamin B-12, and a super B-complex).

One doctor said there are good medications for nerve pain but fatigue is a common side effect, and since I already feel fatigued enough, I don't want to go that route. Right now I just try to keep my mind constantly busy so that I don't notice the pain as much, and when it gets really bad, I take over-the-counter painkillers to take the edge off.

What I'm looking for from this post

• First, it just feels good to get my story out there to people who may understand what I'm going through.
• Second, does anyone have any idea what's going on with me, and why the sudden random peripheral neuropathy (assuming that's what it is)?
• Third, where should I go from here? When I saw the neurologist, it was at the beginning of December when the pain was just starting, so he didn't really look into it that much. I could go to another neurologist (a different one, because the first one was a jerk), but I'm so tired of doctors not knowing (or caring, or believing) what's going on with me.

Peripheral Neuropathy symptoms
Spontaneous burning pain in my fingers, hands, wrists, toes, feet, and ankles *** I'm full body...from my scalp to my toes, and all points in between.
Occasional muscle cramps/contractions in my hands and feet***I have horrible feet and leg cramps, especially with salty food.
Sometimes a deep ache in my thigh or upper arm *** Yes, in my legs.
Tingling in my right index finger***sporadic tingling all over, especially in my temples
Muscle twitches on occasion (feet, shoulder) *** In my legs all the time. I can feel them, but can't see them.
Other random shooting and burning pains, mostly in my arms and legs*** When it first started, I had the horrible nerve pain in my legs and feet. It's subsided to "just" tingling and burning now.

Other symptoms
Unexplained weight loss (40 lb in 6 months) *** The opposite...gain.
Difficulty keeping my weight (I have to eat a ton or I continue to lose)
Constant low-grade fever (between 99 and 100)*** no fever
Fatigue (don't have the energy I used to)*** no fatigue

Tests and imaging done (with normal results)
Brain MRI, neck MRI, chest X-ray, spinal tap
Basic tests like CMP, CBC, etc.
Endocrinology tests for thyroid, adrenal, and hormonal function
Lyme, EBV, rheumatoid factor
Protein immunoelectrophoresis, protein electrophoresis
Magnesium, Ferritin, Vit D, Vit B12, growth hormone
Others that I can't think of, but ask if you have ideas

Anyway, thanks in advance for reading and replying!

-Liz

[echoes long ago]

with constant fever, fatigue and unexplained weight loss, you should be getting an in depth workup to find out what is going on with you. did you ever have anti hu antibody testing?

[liz_monty2]

Originally Posted by echoes long ago

with constant fever, fatigue and unexplained weight loss, you should be getting an in depth workup to find out what is going on with you. did you ever have anti hu antibody testing?

Yes, I believe that was part of the huge panel my neurologist ordered, ruling out paraneoplastic syndromes.

It just seems like something is eating me alive, first taking my weight, then my energy, and now my nerve health. Maybe its an early stage of cancer that's not detectable yet, I don't know. Right now I'm just trying to manage what I have and waiting for any new symptoms that might shed some light on things. All my doctors have run out if ideas.

[liz_monty2]

Thanks for your reply. I hadn't thought about genetic tests, that's a good idea. I've had an Ancestry DNA test done (I used to work at Ancestry), but I'll look into 23andme. Also, I just got the standard Lyme test, so I'll look into those others you mentioned too. I don't have a whole lot of money, but it's nice to at least know my options! Thanks again.

Originally Posted by janieg

Hi Liz,

Welcome to the forum, but sorry you find yourself here. It's not as active as it once was as I think many of us long-time sufferers have just begrudgingly accepted our fate.

Like you, I had a sudden onset five years ago and am "idiopathic." I've had every test under the sun run, most multiple times.

Be it coincidence or not, right after my neuropathy started, I underwent unexplained weight GAIN. Twenty pounds poured on in a flash, and I also developed hypoglycemia. I had to carry around glucose tablets all the time. Long story short, a self-funded genetic test turned up a mutation that I thought might be involved in that. Even though I'm just a carrier of this mutation (the disorder is "Biotinidase Deficiency), when I started supplementing with biotin, my hypoglycemia went away (and the 20 pounds melted off). Unfortunately, it wasn't the solution for my neuropathy that I hoped. My next door neighbor, a retired gyn, is the only doctor who has ventured to say that perhaps living with lower levels of this enzyme for a half-century may have caused nervous system damage, and I've just stopped the process now. My doctors will say nothing about it, nor would the world's foremost expert on the subject comment. He said he's just focused on the full-blown disorder, and had no data on those of us with just clinically low-normal levels of the enzyme.

I tell you all this just because I apparently have metabolic issues that became symptomatic at the same time I developed the neuropathic symptoms. As I was 50 at the time, hormonal changes were taking place as well. Who knows if they played a role in the mess, and you mentioned your problems started after a pregnancy.

The fever you have is worrisome. When you say you were tested for Lyme, did you got to a Lyme Literate Doctor (LLD), or did you just get the standard test? If the latter, you might want to try an LLD for a full work-up. Insurance usually won't cover it, though. Here's where you can find one in your area:

...

Have you taken any genetic tests, even just the ones for ancestry/genealogy? You can get some medical results for those by uploading the raw data to another website. You never know, you might spot something. That's how I discovered my biotinidase issue. If you haven't taken one, you might want to consider the 23andme health test. Or if money isn't an issue, a full exome test like the one offered by Genos - Own your DNA, Learn about Yourself, Drive Research.

Jane

[janieg]

You can download your DNA from Ancestry, and upload it to this website to see what medical information can be gleaned from it. I think it costs $10.00.

Promethease

Originally Posted by liz_monty2

Thanks for your reply. I hadn't thought about genetic tests, that's a good idea. I've had an Ancestry DNA test done (I used to work at Ancestry), but I'll look into 23andme. Also, I just got the standard Lyme test, so I'll look into those others you mentioned too. I don't have a whole lot of money, but it's nice to at least know my options! Thanks again.