Aa
Daughter (13F) experiencing headaches + limb numbness, prickling, weakness
I have a 13-year-old daughter (5'3, 125lbs, white/Caucasian) who, until a year ago, was a healthy and incredibly athletic kid. She has periodically struggled with headaches since the age of 10, but no other major symptoms. Last fall she began complaining of numbness and a painful prickling sensation in her face at first, and then in her arms and legs. It first came on shortly after eating junk food at Halloween last year, so we thought it might have been a food allergy or sensitivity of some sort. Since then we've been very careful of her diet but the symptoms have resumed and escalated:
- The headaches have become much more regular. She says they feel like "something is pressing against [her] forehead."
- She has limb weakness. If we try to take her for even a moderately long walk she will frequently be limping before we are through. On bad days she limps the whole day. Sometimes her legs will fail her while she is just walking normally and she will almost fall. This used to be a kid who loved serious hiking -- I've seen her do 12 miles with 4,000 feet of elevation gain without blinking. Now something like that would be unimaginable, and on worse days she'll have trouble with a 2-mile walk.
- She still has the numbness, prickling, stinging sensation, especially in her arms. Her hands and forearms tense up and spasm periodically and involuntarily. Her forearms and hands sometimes feel very cold. Her hands have a clearly visible tremor sometimes.
- She has some sensory or cognitive issues when she's feeling poorly -- her vision will sometimes be blurry, and she will have trouble focusing on anything. (She reports, "I'll stop really hearing what someone is saying to me and have to ask them to repeat it.")
- Possibly unrelated, but she has also developed bad regular heartburn that has caused her to have to make pretty meaningful changes to her diet.
- As of this week she has begun complaining of non-heartburn chest pain as well that seems to correlate with how much she is feeling her other symptoms. ("It feels like I'm being stabbed.")
With the exception of heartburn, all of these symptoms seem to correlate. On days when she feels one of them, she feels several.
She is not currently on any prescription medications. She was recently found to be anemic so she is taking iron supplements. She has had several rounds of blood testing since the symptoms began and had not been anemic in the earlier set. She does not smoke, drink, or use recreational drugs.
Obviously this is interfering with her life significantly. She is an active kid, she's in an advanced academic program, she participates in a team sport, and she's been having to take regular absences from everything because of her symptoms. She tries not to show it but she is very upset and scared. We all are.
We have taken her to a pediatrician repeatedly. She has been in the ER three times. We applied to the Mayo Clinic but her case was not accepted. She has seen a rheumatologist, who ran extensive blood tests. She has seen multiple neurologists. She went through CT and MRI scans late last year and both came back normal. She has done urine tests for environmental toxins. We are no closer to a diagnosis. The last neurologist told us it could be "just teenage anxiety." That doesn't make much sense to us, and none at all to her. Regardless, we have reduced her commitments to give her a calmer schedule and a chance to recover, but after many months we are still seeing no improvement.
We have a family history that includes sarcoidosis, rheumatoid arthritis, skin cancer, and type 2 diabetes. Her older sister has also previously suffered from Bell's Palsy. We live in the northeast and are regularly outdoors so exposure to ticks is possible. She also may have had COVID a month or two before the onset of these symptoms. (If she did, it was a very mild case and we didn't bother testing.)
We are absolutely desperate for a diagnosis. At this point we don't even know what testing to run next or what sort of specialist to speak to. Any guidance would be greatly appreciated.
- The headaches have become much more regular. She says they feel like "something is pressing against [her] forehead."
- She has limb weakness. If we try to take her for even a moderately long walk she will frequently be limping before we are through. On bad days she limps the whole day. Sometimes her legs will fail her while she is just walking normally and she will almost fall. This used to be a kid who loved serious hiking -- I've seen her do 12 miles with 4,000 feet of elevation gain without blinking. Now something like that would be unimaginable, and on worse days she'll have trouble with a 2-mile walk.
- She still has the numbness, prickling, stinging sensation, especially in her arms. Her hands and forearms tense up and spasm periodically and involuntarily. Her forearms and hands sometimes feel very cold. Her hands have a clearly visible tremor sometimes.
- She has some sensory or cognitive issues when she's feeling poorly -- her vision will sometimes be blurry, and she will have trouble focusing on anything. (She reports, "I'll stop really hearing what someone is saying to me and have to ask them to repeat it.")
- Possibly unrelated, but she has also developed bad regular heartburn that has caused her to have to make pretty meaningful changes to her diet.
- As of this week she has begun complaining of non-heartburn chest pain as well that seems to correlate with how much she is feeling her other symptoms. ("It feels like I'm being stabbed.")
With the exception of heartburn, all of these symptoms seem to correlate. On days when she feels one of them, she feels several.
She is not currently on any prescription medications. She was recently found to be anemic so she is taking iron supplements. She has had several rounds of blood testing since the symptoms began and had not been anemic in the earlier set. She does not smoke, drink, or use recreational drugs.
Obviously this is interfering with her life significantly. She is an active kid, she's in an advanced academic program, she participates in a team sport, and she's been having to take regular absences from everything because of her symptoms. She tries not to show it but she is very upset and scared. We all are.
We have taken her to a pediatrician repeatedly. She has been in the ER three times. We applied to the Mayo Clinic but her case was not accepted. She has seen a rheumatologist, who ran extensive blood tests. She has seen multiple neurologists. She went through CT and MRI scans late last year and both came back normal. She has done urine tests for environmental toxins. We are no closer to a diagnosis. The last neurologist told us it could be "just teenage anxiety." That doesn't make much sense to us, and none at all to her. Regardless, we have reduced her commitments to give her a calmer schedule and a chance to recover, but after many months we are still seeing no improvement.
We have a family history that includes sarcoidosis, rheumatoid arthritis, skin cancer, and type 2 diabetes. Her older sister has also previously suffered from Bell's Palsy. We live in the northeast and are regularly outdoors so exposure to ticks is possible. She also may have had COVID a month or two before the onset of these symptoms. (If she did, it was a very mild case and we didn't bother testing.)
We are absolutely desperate for a diagnosis. At this point we don't even know what testing to run next or what sort of specialist to speak to. Any guidance would be greatly appreciated.
What possible treatment(s) could there be?
That's simple, in a way. Don't do anything that is pro-inflammatory. But do everything that is anti-inflammatory.
Then the details of that can become ultra complicated.
That's simple, in a way. Don't do anything that is pro-inflammatory. But do everything that is anti-inflammatory.
Then the details of that can become ultra complicated.
Why become expert as far as having an overview? Because she doesn't fit well into anything easily classified, or else they'd have done that by now. So you need to know *why* her problems exist, in order to counter them. That's Functional Medicine. The best FM doc I know of is the GP named Mark Donohoe, in AU. He has various talks online, but you need to know the basics first.
Speaking of Donohoe, I forgot to include Chronic Fatigue Syndrome in the list of mysteries. Throw in fibromyalgia, too; not because she has any of these per se, but to understand the mechanisms involved.
And always always always think of the immune system in military terms. Killers and commanders and communicators.
Speaking of Donohoe, I forgot to include Chronic Fatigue Syndrome in the list of mysteries. Throw in fibromyalgia, too; not because she has any of these per se, but to understand the mechanisms involved.
And always always always think of the immune system in military terms. Killers and commanders and communicators.
- you can send PMs here. text only
- you can post images on your account here, naturally with any private info blacked out
- it's always useful to post test ranges
"There are some minor outliers... that none of the doctors we've seen have found significant."
I'd disagree. E.g.:
- vit D is generally anti-inflammatory. So having low D can make her condition somewhat worse. Plus, if she's the outdoor type and gets sun, we'd want to know why her D is low.
Begin by assuming that for her (not necessarily for the average person), *everything* matters, and everything is linked somehow. Unless there is strong evidence otherwise.
For the moment, the tests of most interest were the ones done by the rheumy. ANA and dsDNA, e.g.
"...an inflammation indicator"
Which? CRP, ESR? Those are the basic ones, there are others to ask for shortly, as a fishing expedition. Like IL-6, IL-1, TNF.
"UIBC is levels were high (386.)"
Yep, as if there is not enough serum iron to saturate, which fits with low absorption of iron. Btw, it usually takes a while to raise iron via supplementation. And take with vit C to absorb better.
"one Lyme band"
That's always a possibility.
"... specific books or online resources you recommend?"
Nope; and it would, I think, be a waste to get bogged down in anything formal like an Intro to Immunology course. That'd just slow you down.
What you should do first is become very aware of what immune cells do. And also an overview of the various signalling molecules, like interleukins (IL-6), amines (histamine), and the rest. Watch lectures and interviews on yutube, and some patient accounts, too.
But patient accounts of what? Anything that fits with what can be classed as mystery immune conditions. From lupus, and seronegative RA, Ehlers Danlos, MCAS, MS... lots of things that are different from each other yet have commonalities.
For very starters, learn what Mast Cells do. They are instrumental in food sensitivities. Orchestrators of harmful immune response, but not "autoimmune".
You're a good dad, they're lucky to have you.
- you can post images on your account here, naturally with any private info blacked out
- it's always useful to post test ranges
"There are some minor outliers... that none of the doctors we've seen have found significant."
I'd disagree. E.g.:
- vit D is generally anti-inflammatory. So having low D can make her condition somewhat worse. Plus, if she's the outdoor type and gets sun, we'd want to know why her D is low.
Begin by assuming that for her (not necessarily for the average person), *everything* matters, and everything is linked somehow. Unless there is strong evidence otherwise.
For the moment, the tests of most interest were the ones done by the rheumy. ANA and dsDNA, e.g.
"...an inflammation indicator"
Which? CRP, ESR? Those are the basic ones, there are others to ask for shortly, as a fishing expedition. Like IL-6, IL-1, TNF.
"UIBC is levels were high (386.)"
Yep, as if there is not enough serum iron to saturate, which fits with low absorption of iron. Btw, it usually takes a while to raise iron via supplementation. And take with vit C to absorb better.
"one Lyme band"
That's always a possibility.
"... specific books or online resources you recommend?"
Nope; and it would, I think, be a waste to get bogged down in anything formal like an Intro to Immunology course. That'd just slow you down.
What you should do first is become very aware of what immune cells do. And also an overview of the various signalling molecules, like interleukins (IL-6), amines (histamine), and the rest. Watch lectures and interviews on yutube, and some patient accounts, too.
But patient accounts of what? Anything that fits with what can be classed as mystery immune conditions. From lupus, and seronegative RA, Ehlers Danlos, MCAS, MS... lots of things that are different from each other yet have commonalities.
For very starters, learn what Mast Cells do. They are instrumental in food sensitivities. Orchestrators of harmful immune response, but not "autoimmune".
You're a good dad, they're lucky to have you.
So then, you and her have been down the standard path, with no benefit. So your best bet is that you should become expert, in order to help both daughters. When you feel as if your head might explode from absorbing too much knowledge, you'll know you are on the right track :)
In lieu of that, find an extraordinary Functional Medicine Internist, to focus on the *why* (not just pattern matching), as a possible path toward improvement. But some docs just advertise themselves as Functional Medicine because it sounds good - though they don't put in the mental effort.
There is likely no magic specialist for her, with a magic test and a magic pill - though that's what almost everybody instinctively wants.
In lieu of that, find an extraordinary Functional Medicine Internist, to focus on the *why* (not just pattern matching), as a possible path toward improvement. But some docs just advertise themselves as Functional Medicine because it sounds good - though they don't put in the mental effort.
There is likely no magic specialist for her, with a magic test and a magic pill - though that's what almost everybody instinctively wants.
Hi, the short answer is that it is not at all unusual for young, fit females to develop hyperactive immune dysfunction. Here's the usual pattern:
- an immune/inflammatory Fx (for her, sarcoidosis and RA - and the Bell's Palsy)
- an Hx (in her, headaches possibly histamine or interferon etc. headaches)
- a viral illness can be a proximate (as opposed to underlying) cause
- then seeing many specialists (often over years), who merely do pattern matching and focus only on their own specialty
- exacerbating food sensitivities can be difficult to pin down
- symptoms wax and wane
- preposterously being told it is psychological
------------------------------------
Is she taking B12? GI problems might have reduced her absorption = anemia.
Inflammation can cause neuropathies AND brain fog, so there's a unifying approach.
Food sensitivities can be from components of foods. Oxylates, salicylates, histamine, etc.
Tying in heartburn? Try the antihistamine H2 blocker "antacids" such as Pepcid,, Tagamet, Zantac.
Try H1 blockers, sedating or non-sedating, for systemic benefit.
For an eye opener, take a tour of various medical websites and look up the Bell's Palsy cause: you'll see 'the cause is not well understood' over and over. I say that to indicate that there are mystery immune conditions. There are in fact many. No doc can say they've ruled out hyperimmunity as the underlying cause. And "autoimmune" is not all there is.
Sarcoidosis is absolutely not understood. We know the pathophysiology but not the etiology.
What tests *exactly* did the rheumy run? Besides ANA.
- an immune/inflammatory Fx (for her, sarcoidosis and RA - and the Bell's Palsy)
- an Hx (in her, headaches possibly histamine or interferon etc. headaches)
- a viral illness can be a proximate (as opposed to underlying) cause
- then seeing many specialists (often over years), who merely do pattern matching and focus only on their own specialty
- exacerbating food sensitivities can be difficult to pin down
- symptoms wax and wane
- preposterously being told it is psychological
------------------------------------
Is she taking B12? GI problems might have reduced her absorption = anemia.
Inflammation can cause neuropathies AND brain fog, so there's a unifying approach.
Food sensitivities can be from components of foods. Oxylates, salicylates, histamine, etc.
Tying in heartburn? Try the antihistamine H2 blocker "antacids" such as Pepcid,, Tagamet, Zantac.
Try H1 blockers, sedating or non-sedating, for systemic benefit.
For an eye opener, take a tour of various medical websites and look up the Bell's Palsy cause: you'll see 'the cause is not well understood' over and over. I say that to indicate that there are mystery immune conditions. There are in fact many. No doc can say they've ruled out hyperimmunity as the underlying cause. And "autoimmune" is not all there is.
Sarcoidosis is absolutely not understood. We know the pathophysiology but not the etiology.
What tests *exactly* did the rheumy run? Besides ANA.
1 Comments
Thanks for the reply. I am sadly all too aware that sarcoidosis and Bell's Palsy are not well understood.
I don't know how to answer exactly what tests were run. I'm willing to privately send test results but not post them on a forum. I see a hematology report, a comprehensive metabolic report, a lipid panel, cholesterol levels, "IRON + TIBC + UIBC + SAT" levels, thyroid functioning tests, an inflammation indicator, hormone levels, Lyme western blot tests, broader tick-borne illness tests, some vitamin and mineral levels, heavy metals tests, and environmental toxins tests.
Almost all tests came back normal. There are some minor outliers (things just outside of the "normal" band) that none of the doctors we've seen have found significant. Here are the results that were not normal or very close to normal:
- Her iron levels were 5 ng/mL (normal is 7-140) and her UIBC is levels were high (386.)
- She tested positive for one Lyme band.
- Her D-25 is low (22 ng/mL).
- She tested high for exposure to BPA (9.65 ug/g), Butylparaben (16.56 ug/g), and Glyphosate (17.15 ug/g).
You say "become an expert." Are there specific books or online resources you recommend?
I don't know how to answer exactly what tests were run. I'm willing to privately send test results but not post them on a forum. I see a hematology report, a comprehensive metabolic report, a lipid panel, cholesterol levels, "IRON + TIBC + UIBC + SAT" levels, thyroid functioning tests, an inflammation indicator, hormone levels, Lyme western blot tests, broader tick-borne illness tests, some vitamin and mineral levels, heavy metals tests, and environmental toxins tests.
Almost all tests came back normal. There are some minor outliers (things just outside of the "normal" band) that none of the doctors we've seen have found significant. Here are the results that were not normal or very close to normal:
- Her iron levels were 5 ng/mL (normal is 7-140) and her UIBC is levels were high (386.)
- She tested positive for one Lyme band.
- Her D-25 is low (22 ng/mL).
- She tested high for exposure to BPA (9.65 ug/g), Butylparaben (16.56 ug/g), and Glyphosate (17.15 ug/g).
You say "become an expert." Are there specific books or online resources you recommend?
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