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Sad and scared--tingling
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Pebbledash
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PostPosted: Mon Dec 04, 2017 1:53 am    Post subject: Sad and scared--tingling Reply with quote

53 year old man.

About nine weeks ago started on budesonide after changing consultants. Pretty much immediately, the diarrhea and stomach cramps and sourness disappeared.

I was, for the first time in years, normal. It was miraculous.

For the very first time, a CRP test came back normal--no inflammation.

I also have Celiacs and Addison's Disease, but now was in control.

I started resistance training, playing tennis, peak fitness. Moving forward after the death of both parents.

Then.

Then the tingling started. First in my left hand--thought it was down to the weight-training with dumbells.

Then moved to foot. Tingling and numbness.

For 8 weeks I have been in hell, terrified of MS. I came off of budesonide today, but already the cramps and D had started up again. The sheer levels of anxiety and depression would defeat anyone's stomach.

For the first time in years I was moving forward. Now the good work has been undone. I have the same bad tummy, and I am terrified, absolutely terrified, that I will be diagnosed with MS. I'm just about existing, no longer living.
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SN8888

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Joined: 16 Dec 2016

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2018 Jan 21 - 9:11 PM



Location: MA

PostPosted: Mon Dec 04, 2017 9:06 am    Post subject: Reply with quote

B-12 deficiency can cause tingling and nerve problems, probably a lot of other things too (deficiencies in B vitamins and other vitamins and minerals). I wouldn't worry about MS, there are other more likely explanations, but obviously you should talk to your Dr...
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tex
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Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Mon Dec 04, 2017 9:26 am    Post subject: Reply with quote

Hi,

Remember, it's never as bad as we think, because we always fear the worst. And it's human nature to fear the unknown.

Pebbledash wrote:
The sheer levels of anxiety and depression would defeat anyone's stomach.


Yes it would, because stress and anxiety can trigger MC. But that statement says that you have a severe (and probably chronic) magnesium deficiency. Your main problem is probably vitamin and mineral deficiencies, specifically methylcobalamin, vitamin D, and magnesium. Both celiac disease and MC deplete certain vitamins and minerals. Anxiety and depression are symptoms of magnesium deficiency. If you don't correct the deficiencies, then yes, you may develop MS or some other autoimmune disease.

Pebbledash wrote:
Then the tingling started. First in my left hand--thought it was down to the weight-training with dumbells.

Then moved to foot. Tingling and numbness.


As SN8888 pointed out, that may be an indication that your body is running out of vitamin B-12. Have you been taking a methylcobalamin supplement? If not, the MC has probably depleted the last of your vitamin B-12 reserves.

Below is a quote from pages 31–33 of my book on Vitamin D:

Quote:
Multiple sclerosis is another debilitating disease with autoimmune origins.

One of the first neurological markers of multiple sclerosis (MS) to appear for many patients is known (in medical terms) as a "clinically isolated syndrome" (CIS). A common example of a CIS is optic neuritis (inflammation of the optic nerve, often resulting in pain, numbness, or tingling). When a CIS is detected, an MRI of the brain is usually ordered to rule out lesions. If they are detected, the presence of lesions indicates a very high risk of developing MS. Roughly half of all patients who have optic neuritis, eventually develop MS. Obviously, at this stage any effective preventative measures can be extremely valuable.

When lesions are present, associated with a CIS, the cause of inflammation is typically due to an attack by the immune system on the myelin sheaths that protect and insulate nerve fibers. This is known as a "demyelinating" event, and it is the reason why MS is classified as a demyelinating disease. In fact, MS is the most common demyelinating disease. Typically, when a second demyelinating event occurs, a diagnosis of MS is established.

With demyelinating diseases, if sufficient damage accrues over time to the myelin sheaths, the nerves that they originally protected, will die. When that happens, the damage cannot be reversed.

But research exists to demonstrate that the progression of CIS events to MS can be delayed and possibly postponed indefinitely in some cases. In a double-blind, randomized trial in which the subjects had all been diagnosed with optic neuritis, and who had a 25(OH)D blood level below 30 ng/ml (75 nmol/l), Derakhshandi et al. (2013) were able to show that vitamin D is very effective at reducing the risk level.8 The vitamin D group received 50,000 IU of vitamin D per week (which is equivalent to roughly 7,000 IU per day), while the other group received a placebo.

Of the group that received the vitamin D supplement, not a single person experienced a second demyelinating event. On the other hand, almost half of the group that received a placebo experienced a demyelinating event (5 out of 11), and therefore they progressed to a diagnosis of MS. The researchers concluded that the protection provided by the vitamin D supplement in this particular study led to a 68.4 % risk reduction, overall. Compared with most preventive medical treatments in general, that is a very high rate of success.


Here is reference 8 from that quote:

Derakhshandi, H., Etemadifar, M., Feizi, A., Abtahi, S. H., Minagar, A., Abtahi, M. A., . . . Tabrizi, N. (2013). Preventive effect of vitamin D3 supplementation on conversion of optic neuritis to clinically definite multiple sclerosis: a double blind, randomized, placebo-controlled pilot clinical trial. Acta Neurologica Belgica, 113(3), 257–263. doi:10.1007/s13760-012-0166-2

Here's a link to that reference: https://www.ncbi.nlm.nih.gov/pubmed/23250818

The tingling may indeed be a CIS. As I recall, published research shows that virtually all MS patients also have chronic magnesium deficiencies. There is also published evidence that magnesium treats MS.

Magnesium and MS: Is Deficiency the Secret Cause?

But the main reason why you are having these symptoms (and the cause of your MC relapse) may be due to untreated pr inadequately treated celiac disease and/or MC. Have you been strict enough with your diet? Diet cross-contamination among celiac patients is ubiquitous. It only takes traces of gluten, dairy, or soy to compromise and defeat the diet. And having MC compounds the problem.

I suggest you reanalyze your diet to make sure that no cross-contamination is sneaking into your diet, and make sure that you are taking enough vitamin D and magnesium (because one can't work without the other), and the active form of vitamin B-12. Doing that, you should see improvement fairly quickly.

At least this is what I would do if I were in your situation. Best of luck with your recovery.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Pebbledash
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PostPosted: Mon Dec 04, 2017 10:37 am    Post subject: Reply with quote

Thank you for taking the time to answer--I appreciate it.

I will review it, but, truth be told, my vitamin levels have been tested, and they are fine. I already take D3 and magnesium, and have been taking B vitamins since this started two months ago.

I have had numerous blood tests, and they are all normal.

I am now seeing a neurologist. I am in a constant state of panic.
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tex
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Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Mon Dec 04, 2017 1:29 pm    Post subject: Reply with quote

How much magnesium, and what kind (if you can tolerate my nosiness)? And do you take it scattered throughout the day, or all at once. Some of us (me, for example) have a very difficult time absorbing enough magnesium to supply our needs. We are born with genes that compromise our ability to absorb magnesium. We have to really work at it to be able to supply our magnesium needs without overloading our kidneys.

Blood tests for Vitamin B-12 will always show results that are much higher than they actually are :

1. If we have methylation issues (over half the general population does)

2. If we are taking a vitamin B-12 supplement and we don't stop taking it about a week or 10 days before the blood draw to give our system time to reach equibrilium with the processing of vitamin D. Remember, when we're getting vitamin B-12 from a supplement, that's not the same as getting it from food.

Don't count on your doctors to know this stuff. Very, very few of them understand it or are even aware of it.

A few years ago I thought that my diet was "clean", but it was actually being cross-contaminated with trace amounts of gluten. That was all I needed to kick me out of remission. When I corrected the problem, the symptoms all disappeared. My blood test results all looked good too, and my doctor was as happy as a lark, but I wasn't. And his pointing out how good my test results looked didn't seem to have much effect on my symptoms. We have to be constantly vigilant because labels change and enviromental elements around us change over time.

Eight years ago a neurologist diagnosed me with Parkinson's disease — the only problem is that I don't have Parkinson's disease. I eliminated the symptoms by diet changes and by taking magnesium and the active forms of vitamins B-12, B-9, and B-6 (to get around the methylation issues). Don't be surprised if your neurologist diagnoses you with one or more of the neurological diseases that are commonly associated with a chronic magnesium deficiency (Parkinson's, Alzheimer's, ALS, etc.) because many of us have the diagnostic symptoms unless we treat them.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
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Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Mon Dec 04, 2017 2:01 pm    Post subject: Reply with quote

Tex has pretty much replied with what I was going to say....
Mainstream testing is not an accurate indicator of what is going on, and what doctors class as 'normal' or 'ok' is not the ideal.

the information, suggestions, encouragement etc that we are providing is based on hundreds (over a thousand) of peoples experiences with similar if not identical issues. once people are on the right eating plan and right supplement protocol - chronic health issues like this go away.

its up to you if you want to life life with minimal symptoms (and minimise stress and anxiety)
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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TM
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PostPosted: Mon Dec 04, 2017 2:05 pm    Post subject: Reply with quote

Good luck with the neurologist Pebbledash. Hopefully when you’re able to make some sense of all this you’ll arrive at a conclusion different than the one you now fear. Tex’s response though has given me cause for concern.

My B-12 and folate levels were tested a few weeks ago because of increasing numbness in both feet, and tingling/numbness in both hands. Since I’d been taking varying dosages of Thorne methylated B vitamins for at least 6 months and Methyl Guard for a month or two right up until the test, apparently the results were skewed high and not helpful. I’ve also been taking 10,000 IU of D3, +/- 800 mg Doctor’s Best magnesium glycinate with another +/- 500 mg from Life Flo mag oil. (This year I was able to gradually reduce oral magnesium from 1400 mg to 800 mg with use of the oil). I’ve been increasing D3 since 2016 from 1000 IU to 10,000, yet my levels decreased from 51 (in 2015 prior to radiation) to <35 for the last 2 years.

I assumed the worsening numbness had to do with blood sugar issues, so was surprised to see reference to the relationship between optic nerve damage and MS. I’m on close watch for glaucoma, so have had annual optic nerve scans and visual field tests for years. Optic nerve damage was noted in 2016 and 2017, however since pressure was not excessive that was the end of it. My MC has been virtually unsymptomatic for 2+ months, and I continue to be very careful about my diet, cross contamination etc. The numbness and tingling persist—its been about a month now. (I also have Raynaud’s however that’s a different type of numbness). Should I be concerned enough to investigate further?
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“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
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brandy
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Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Mon Dec 04, 2017 3:31 pm    Post subject: Reply with quote

Hi Pebble,

Sorry for the loss of your parents. You have been through a lot.

Perhaps consider going back on budesonide for awhile since it really helped you out. I just read that you were on budesonide for only about 9 weeks. Almost everyone will reflare if they are on budesonide for only 9 weeks. It is not long enough. Generally folks on the board find it takes stints of 4-5-6-7 (and some folks longer) months or so on budesonide to settle things down. We recommend a very long slower taper when you are ready to get off of budesonide.

I had the tingling down the arm that resolved with the Thorne methylguard. (It took awhile.)

Please keep us posted.
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brandy
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Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Mon Dec 04, 2017 3:40 pm    Post subject: Reply with quote

Pebble and TM,

A lot of things can cause tingling. A friend of mine essentially has tingling from unknown causes (she has been to numerous docs.)

Pebble--also a bit off topic for this thread but I'm not sure if you saw my kidney thread. Anyways....I'm also lifting (female). I learned the hard way that I was not drinking enough water. I've gone from drinking about 2 glasses of water a day to about a gallon of day and make sure to get some salt in during the day. The lifting makes your kidneys work a bit harder (not a bad thing) and the water keeps your kidneys youthful.
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brandy
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Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Mon Dec 04, 2017 3:42 pm    Post subject: Reply with quote

Pebble--If the tingling and numbness started after the lifting I would agree with you that there could be a linkage to the lifting and position.
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Pebbledash
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PostPosted: Mon Dec 04, 2017 10:34 pm    Post subject: Reply with quote

Thank you for all your kind comments. It will take me time to process them all properly.

I will certainly review my supplements, and get back to you.

I am feeling in a better place than I was earlier.
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Sue777
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PostPosted: Tue Dec 05, 2017 8:43 am    Post subject: Reply with quote

Hi there.
I strongly suggest you go back on the Budesonide..... you know it worked and why add unnecessary physical and mental stress right now.... get the intestinal issues back to a good place and then you will be better equipped to focus on the other challenges.

This is probably totally unrelated but one of the most mystifying and confusing symptoms that I have pop up regularly (but sporadically) is tingling. It usually starts in my upper arms, then the shoulders, neck, up the head and face, etc. I have yet to pinpoint what causes it but I know that every time I change thyroid medication doses or my thyroid levels shift, it happens. I thought it was cleared up for a while (and was so relieved) but yesterday it crept back in again. Still trying to figure this one out and, if I do, I'll definitely share it with you. Please do the same.

Try to calm yourself.... the anxiety is not doing you or your body any favors.
Sue
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Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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brandy
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PostPosted: Tue Dec 05, 2017 11:13 am    Post subject: Reply with quote

I agree with Sue, MC is a depressing disease....if the budesonide worked get back on it for awhile to get some quality of life back and then you can work on the other issues.
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Pebbledash
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PostPosted: Wed Dec 06, 2017 10:13 pm    Post subject: Reply with quote

Neurologist suggested peripheral neuropathy. MRI is not indicative of Multiple Sclerosis. At least, for now.

Although it was a big relief to hear that MS is not, at present, a diagnosis, the paresthesia is worsening.

Sometimes, I have read, neuropathy can be associated with Celiacs. But there is scant information available. I have been gluten free for years, with consistently normal antibodies.

So this sucks. After being terrified at the prospect of MS, I want to move on. But I can't, as the paresthesia is not improving.

It's almost like, once I started taking budesonide, my body said, "Oh look. His intestines are now improving. The inflammation has, for the first time since diagnosis, gone--CRP is, at long last normal. Let's attack him somewhere else."
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tex
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Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Wed Dec 06, 2017 10:43 pm    Post subject: Reply with quote

I was diagnosed with peripheral neuropathy about 8 years ago. I blame it on reacting for so many years before I figured out the problem that I ran out of B-12, magnesium, and maybe vitamin D before I started supplementing them. And published research shows that in some cases, neurological symptoms due to gluten damage can occur years before the digestive symptoms.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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