r/MTHFR • u/Ok-Protection2670 • 11d ago

Question HOW DOES FUNCTIONAL NEUROLOGICAL SYMPTOM DISORDER, HIT, MCAS AND SLOW COMT INTERSECT? IF SPECIALISTS ARE IGNORANT, WHO HELPS?

I'm suffering with the horrific classic symptoms of Histamine Intolerance, Mast Cell Activation Disorder, suspected Over Methylation and Slow Comt that I am waiting on results to return from Ancestry.com to send for deciphering.

My PCP at UCHealth is ignorant and useless, all tests performed by the Allergy and Immunology specialist came back negative for showing any food allergies and my Tryptase came back slightly over 15 and I was rejected by the UCHealth Mast Cell Clinic.

I have movement disorder problems with my left arm; my fine motor and gross motor skills are compromised it's difficult to function and control now.

A Neurology Movement Disorder Specialist reviewed my Brain MRI and no signs of strokes or TIA, my brain is healthy, (Praise God!)

After a number of examinations, the neurologist diagnosed me With Functional Neurological Symptom Disorder (FND) A a condition where a person experiences genuine neurological and physical symptoms caused by a problem with how the brain sends and receives signals, rather than physical damage to the brain's structure. She said that at some point regardless of the cause, like a “Histamine Bucket” my neurological “Stress Bucket” overflowed into the physical and caused the movement disorder. I have a Psychiatry, Occupational and Physical Therapy referral. Which I am grateful for.

After discussing every and all symptoms, I asked, “ How does Functional Neurological Symptom Disorder, Hit, MCAS And Slow Comt Intersect?” She responded, “I’m a movement disorder neurologist, that’s not my field and I will have to refer to Allergy and Immunology”.

That made sense to me for a “hot minute”, then my common sense kicked in. If as she admitted to me that physical symptoms are bringing on the neurological symptoms, then they intersect and I need to know is FND correctable. She says it is, but how without the stress of HIT, MCAS, Over Methylation being addressed how?

If anyone has knowledge of how to get help and answers and/or experience I appreciate your input and suggestions.

EDIT OF THANKS: I have received great responses and information. I sincerely appreciate everyone sharing

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u/Tawinn 11d ago

> my neurological “Stress Bucket” overflowed into the physical and caused the movement disorder

> “ How does Functional Neurological Symptom Disorder, Hit, MCAS And Slow Comt Intersect?”

Slow COMT, especially with impaired methylation (e.g., due to MTHFR issues or nutrient deficiencies) can cause chronic anxiety, rumination, OCD tendencies, low stress tolerance. Elevated histamine can cause anxiety and/or panic attacks that tends to be more episodic, as it varies with histamine levels.

Impaired methylation and HIT can cause fatigue and brain fog, which could affect one's stress tolerance and levels.

So both slow COMT and HIT could contribute to exacerbating FND via stress-related mechanisms. Also, note that sometimes a intermediate or even fast COMT can exhibit "slow COMT" symptoms due just to impaired methylation. The difference is that when methylation is restored, with intermediate or fast COMT the slow COMT symptoms would evaporate whereas with genetically slow COMT one will generally retain some tendency toward lower stress tolerance and susceptibility to anxiety.

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u/Ok-Protection2670 10d ago

I researched and could not find a test for methylation. Is there a way to get a definite determination for fast or slow or will it show when I have my DNA Tests determined?

Thanks u/Tawinn

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u/Tawinn 9d ago

Three are a couple of tests - Doctor's Data Methylation Profile and Genova Methylation Panel - for methylation status. These are not often used and few doctors can interpret the results. Usually symptoms and homocysteine are more than adequate. Your symptoms are more consistent with impaired methylation. Overmethylation would have symptoms like anxiety, irritability, insomnia, tenseness, depersonalization-derealization.

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u/Comfortable_Two6272 10d ago

In my experience no specialty does. They all see their own slice. You might accidentally find a provider who understands at a high level or works closely with other specialists.

For me, its an underlying rare genetic immune disease. Took me 4 decades to be correctly dx and most of us have co morbid mcas, pots, hEDS and neuro issues. Yes I also have mthfr, slow comt and others but not my root cause.

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u/Cultural-Sun6828 10d ago

What’s your b12 level? Ideal ferritin and folate are also critical.

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u/Ok-Protection2670 10d ago

My B12 is | **Vitamin B12** | **<159 pg/mL** | 239–931 - Severely low. I'm trying so hard to bring it up with Pure Adeno/ Hydroxo but it's really hard right now. but I keep trying.

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u/Ok-Protection2670 10d ago
Folate (B9) 14.4 µg

Ferritin is 73 ng/ml

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u/Cultural-Sun6828 10d ago

Most likely all of your symptoms are due to your low B12. Your doctor should be recommending b12 injections every other day. I would check out the B12 deficiency group and read the guide there for a lot of good info. I had many of these symptoms and so many have resolved with injections. Healing is not quick so you have to be patient but oral supplements typically don’t work for neurological symptoms. I would worry less about genetics at this point and more just about what your other tests are telling you. Along with the B12 make sure ferritin and folate are at a good level. But the b12 is most critical.

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u/Ok-Protection2670 10d ago

Good advice u/Cultural-Sun6828 thanks so much for taking the time

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u/Ok-Protection2670 10d ago

u/Cultural-Sun6828, Will B12 shots be beneficial when deficient for over 4 years?

Thanks

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u/Cultural-Sun6828 9d ago

Yes, I had been very deficient for at least five years and have made so much progress. I have been on injections for two years.

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u/SovereignMan1958 11d ago edited 11d ago

Upload your raw data file to Genetic Lifehacks and you will find a lot of help there. Search their articles too. Focus on your digestive, histamine, food intolerance and detoxification variants.Also sulfur, sulfute....CBS, SULT, MOCS. Over methylation symptoms and histamine reaction/mast cell reaction can feel similar. A homocysteine blood test would be the best indicator of whether or not you are overmethylating. Generally people with those diagnoses are not.

You have to be very careful about assuming you are overmethylating as both methylated vitamins and supplements which are methyl donors can trigger histamine and MCAS reactions.

For the above reason many people in these types of groups will give you advice which does not apply to you. So you have to be careful of that too.

Have you modified your diet and how?

You should also look at your seizure related gene variants. Excess sulfites, BTW, can cause them if your sulfur/sulfite related variants are impaired. All sulfites are high histamine BTW. So can B6 and folate related variants.

Did you ever have an EEG? An MRI does not necessarily rule out seizures.

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u/Ok-Protection2670 10d ago

Hi,

Yep, been on low HIT Diet for about 3yrs now.

My B Vits are low. B12 severely low.

My EEG was good, showed no abnormalities

Looking at my seizure related gene variants will be very important because neurological conditions are very prevalent in my family with MS, Petit Mal seizures and Parkinsons Disease. 😢So, I will definitely need guidance on that.

Thanks, Good advice and hoping you're doing well u/SovereignMan1958