"Cold burn" sensation lower back? Headaches base of skull?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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nkaye
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"Cold burn" sensation lower back? Headaches base of skull?

Post by nkaye » Thu May 14, 2015 1:58 am

Hi there,

Over the past year and half - 2 years my body has just been... dumb :? And insanely frustrating. I'm 43 years old and went from being in the best shape of my life to not being able to do anything. I've had lots of random things that, at this point, I've lost track of... my top two complaints would be my right shoulder area. Total weakness and hangs there like dead weight. My right hand is often weak, with thumb & pinky going numb. I have a 'knot' under my shoulder blade that comes and goes (lasting for months at a time). MRI shows nothing. Working with a wonderful chiropractor (gentle, assigns muscle strengthening exercises, gets it...) ... 2 different acupuncturists ... a PT who specializes in Active Release Technique ... massage therapist whose focus is on fascia ... With no success. (General consensus was it related to my brachial plexus nerve but...??)

About a year ago I was driving and suddenly got this "cold burning" sensation on my lower back. It's like there is a small damp spot on my shirt and a cool breeze comes up. I hope that makes sense! That sensation remained for quite some time (days? weeks? I don't remember... I just know that it came back again...) I also started getting bad headaches at the base of my skull. As if there was no fluid and my brain was just heavy. My head feels so heavy too. There were times when I would wake up feeling totally fine but the moment I sat up it just knocked me back down with such incredibly discomfort. My doctor referred me to a neurologist for an MRI of my brain and things looked fine. She did say that if things got worse to come back and we'd do an MRI of the spine as well... She also explained that MS doesn't typically present in the lower back like that. I have no loss of feeling and I wouldn't describe it as "tingling". Just cold. A cold burn.

I seemed to improve (although have never returned to physical activity b/c the slightest thing would trigger my arm issues)... About 2 months ago my arm issues returned... and the past couple weeks those headaches are back (although i haven't had the awful morning ones) along with the cold sensation in the lower back.

I'm just curious if you've experienced anything similar? I'm so frustrated and depressed about my inactivity. And I just want answers - whatever those might be. I have an appointment with my GP tomorrow... but I often feel I get my best info from forums like this so I just wanted to check with you so you might share your thoughts & experiences.

Thank you so much

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lyndacarol
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Re: "Cold burn" sensation lower back? Headaches base of skul

Post by lyndacarol » Thu May 14, 2015 6:51 am

nkaye wrote: And I just want answers - whatever those might be. I have an appointment with my GP tomorrow...
... you might share your thoughts...
I encourage you to research "vitamin B12 deficiency" (just one possible website: http://b12awareness.org/) and discuss possible screening with your GP. Do NOT take vitamin B supplements before any testing is done, as this will skew test results. (By the way, request your own copy of any test results – it is useful to have the actual result numbers.)

nkaye
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Re: "Cold burn" sensation lower back? Headaches base of skul

Post by nkaye » Thu May 14, 2015 7:26 am

Thank you! My naturopath had checked me for B12 last year and that came back good... Oh. Something else that I was, unfortunately, reminded of last night & this morning... the last 7-8 months occasionally I get insane 'cramps' in my legs. Specifically the muscles at my ankle. All sides. I have an unusually high pain threshold and these scare the absolute heck out of me as i can't stop them and they feel like my foot is just going to snap off. I drink plenty of water and am really good with my magnesium (and omega 3s, probiotics, k2, d3...) So of course I did the ol' google search for MS & leg cramps and "spasticity" came up. Something else to talk with him about I suppose...

I really am most curious about the cold sensation on the lower back... but really... everything. Right?? ugh... thank you, lyndacarol. I also appreciate the reminder to get copies of lab results...

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lyndacarol
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Re: "Cold burn" sensation lower back? Headaches base of skul

Post by lyndacarol » Thu May 14, 2015 11:26 am

nkaye wrote:Thank you! My naturopath had checked me for B12 last year and that came back good... Oh. Something else that I was, unfortunately, reminded of last night & this morning... the last 7-8 months occasionally I get insane 'cramps' in my legs. Specifically the muscles at my ankle. All sides. I have an unusually high pain threshold and these scare the absolute heck out of me as i can't stop them and they feel like my foot is just going to snap off. I drink plenty of water and am really good with my magnesium (and omega 3s, probiotics, k2, d3...) So of course I did the ol' google search for MS & leg cramps and "spasticity" came up. Something else to talk with him about I suppose...

I really am most curious about the cold sensation on the lower back... but really... everything. Right?? ugh... thank you, lyndacarol. I also appreciate the reminder to get copies of lab results...
When your naturopath checked you for B12 last year, I wonder what the actual tests were, what the "good" numbers were, and if you had been taking vitamin B supplements before testing. (You seem to have a good regimen of supplements and I suspect you may have been using B12, folic acid, or a B Complex.)

Initial testing for a possible B12 deficiency should have included:
#1 a serum B12 test (although the newer, more accurate HoloTc test is preferable)
#2 an RBC folate test
#3 a serum homocysteine test
#4 a serum (or urinary – which is cheaper and considered to be more accurate) methylmalonic acid test.

Your symptoms are nonspecific – they are consistent with many conditions. Personally, I have not experienced the cold sensation you described. I have no medical background, but it would seem to be a neurologic symptom. Please be aware that neurologic symptoms can be part of a B12 deficiency, among other conditions, and actually can appear before hematologic manifestations (blood test results).
Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine (or headaches)
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide

nkaye
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Re: "Cold burn" sensation lower back? Headaches base of skul

Post by nkaye » Thu May 14, 2015 3:47 pm

It's all so fascinating, isn't it?? The body is just amazingly complex... I don't remember exactly what tests were done last year and don't have them handy. I did see my primary care today and he ordered a B12 panel along with a Lupus screening, folate, D3, magnesium, electrolytes, my thyroid numbers (I have hashimoto's as well) and others. I'm kicking myself because for some crazy reason I let my husband drop naturopathic coverage this year!? It still may work out well enough financially even with a few visits... so I'm gathering info now and will see my naturopath when I have more info. I do need to return to my AIP diet... which I have strayed from... (sigh)

Thank you again!

lucybee30
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Re: "Cold burn" sensation lower back? Headaches base of skul

Post by lucybee30 » Mon May 18, 2015 3:49 pm

I use my Gaiam TriggerPoint foam roller on my head which is constantly heavy (allergies and sitting at a computer all day kills me). I just lay the lower back of my head down on it and slowly roll my head side to side. The "trigger points" on the roller feel amazing...well, painful, but a good pain!!! It really helps relieve the tension for my entire head. I've tried massages and such, but this works better for me physically and financially! :)

nkaye
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Re: "Cold burn" sensation lower back? Headaches base of skul

Post by nkaye » Mon May 18, 2015 10:30 pm

Brilliant, LucyBee! I'm going to give that a try right now =) Thank you!

janetlynnmurray
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Re: "Cold burn" sensation lower back? Headaches base of skull?

Post by janetlynnmurray » Tue Jun 25, 2019 6:45 am

Hi! I just randomly stumbled across this through a google search. On my way into work today, while driving, I had the same cold burning sensation in my lower back. Not painful, just really weird. I realize this post was a few years ago, but was wondering what your status is now?

ElliotB
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Re: "Cold burn" sensation lower back? Headaches base of skull?

Post by ElliotB » Tue Jun 25, 2019 8:30 am

Welcome to TIMS, the OP has not been active here for several years, sorry.

There are a lot of friendly people here. And a tremendous amount helpful info. Hope you will stick around!

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