Mast Cell Disorder

[Inafog]

How does someone get diagnosed with Mast Cell disorder? Since June my WBC count has been at 3.1, usually it is 8.7. My PCP thinks it was from a virus, so we are just checking it every month. (Although I never had a virus to my knowledge) So far it has been no higher than 3.4. How long should i wait for it to get back into normal range before getting it checked out further? And who would be the right type of doctor to look into it?

I have EDS, Dysautonomia, CSF leak, possible diabetes Insipidus .

[Dr. Diana]

How does someone get diagnosed with Mast Cell disorder? Since June my WBC count has been at 3.1, usually it is 8.7. My PCP thinks it was from a virus, so we are just checking it every month. (Although I never had a virus to my knowledge) So far it has been no higher than 3.4. How long should i wait for it to get back into normal range before getting it checked out further? And who would be the right type of doctor to look into it?

I have EDS, Dysautonomia, CSF leak, possible diabetes Insipidus .

Hi inafog, I’ve done a 360 when it comes to mast cell activation syndrome. “True” mastocytosis should be ruled out (serum tryptase test is best), but it is a rare one of us who actually has mastocytosis. Basically, if you feel better after Zyrtec/Zantac combo (hitting 2 different histamine receptors — we went to double doses of both meds in our home for a while), and you don’t have true mastocytosis, you are said to have MCAS. If that is all there is to it, you don’t need to go to a specialist for antihistamines! Now, your CSF leak! Let’s talk!! 😉 Is it out your nose, ears, or is it spinal? BIG difference in what we do there, and it tells us something about what’s going on, too! Oh, your WBC’s — that CAN jump around a fair amount and it’s just not possible to say how long it may be high or low, but it may be important to know which WBC’s are high. Basophils? Lymphocytes? Eos? etc. I don’t know where you live, but we’ll be running treatment trials for dysautonomia (especially focused on the G.I. symptoms) soon! Info is here: http://prettyill.com/resources/view/gastroparesis_and_ibs_treatment_trial_sign_up_begins
Tell your friends! 😉 Hang in, my friend…

[Inafog]

Thanks Diana,

It is so hard navigating all of this. It seems like each week I have a new rare disease!!! My CSF leak is cervical , and I have been to a specialist and you would know me as nancy on the CSF leak website.. I have been patched about 10 times, but the patches hold until the glue dissolves. My leak is in the nerve roots of my 3 very hyper mobile cervical joints c4-c6. I do get some symptom relief for a few months each time, and then I go back for more glue. The leak is the worst of my symptoms…the dysautonomia comes in second , the gastro issues run a close third!

I was just so curious if the low WBC was a sign of all or this stuff…with your response, I think Mast cell is something I can just table for now.

Do you have any information about diabetes Insipidus? Or heard of it in conjunction with this whole EDS picture?

I read about your study, and I do have terrible GI issues, verrrrrrry slow motility, but I live in the NW. Does the study take place in Texas?

Thank you so much for being a warrior for all of us!

Hugs

Nancy

[Barbara]

Do you have any information about diabetes Insipidus? Or heard of it in conjunction with this whole EDS picture?
Nancy

Hi Nancy,
Yes I looked at Diabetes Insipidous quite a few years ago. I’m sure it was involved in my demise. My history was that I had a bad head and neck injury in 2002, which triggered a progressive decline in my health. At the time, I was looking at what could be causing my tissue to collapse when pressed (and not spring back up) also I was always needing to drink (not to glug it down but to constantly sip). I was urinating often, as a consequence. I couldn’t understand why, if I drank so much, I was exhibiting the symptoms of Dehydration.

I mentioned it to countless doctors but none looked into it.

Here’s a bit of info:-
What causes Diabetes Insipidus?
It is caused by problems with a hormone called Anti Diuretic Hormone (ADH). This hormone plays a key role in regulating the amount of liquid in the body. ADH is made by a part of the brain called the hypothalamus and is stored just below it, in the pituitary gland. Now, in people with ‘raised intra-cranial pressure’, who maybe have a partially flattened (or totally flattened) pituitary gland (called an ‘Empty Sella’) this can become problematic.

In normal people, when the amount of water in the body becomes too low, ADH is released from the pituitary gland. This helps to retain water in the body by stopping the kidneys producing urine. However, if you have a malfunctioning pituitary gland (or hypothalamus), this doesn’t seem to happen as it should, to quote:

“Cranial diabetes insipidus occurs when there is not enough Anti Diuretic Hormone (ADH) in the body to regulate the production of urine. This is the most common type of diabetes insipidus and can be caused by damage to the hypothalamus or pituitary gland, for example after an infection, operation, brain tumour or head injury.”

I rest my case.
Regards
Barbara
(UK)

[Inafog]

Thanks so much for your reply!!!

I have a cyst on my pituitary that was found incidentally about two years ago, they followed that up with a repeat MRI and it showed no growth, so a closed case.

I feel so ill from this whole dehydration issue, and having trouble getting help. Distant doctor trying to order test which none here seems to do, and a PCP who is confused by my labs. No endo appts available until January. I am at a loss as to what to do! I can’t imagine waiting as long as you did to figure this out!

What do you mean by your demise? That does not sound good?

Hugs to you!

[Barbara]

Thank you hugs gratefully accepted!

This Diabetes Insipidous (DI) topic reminds me that I’ve heard one or two (with P.O.T.S., EDS and similar conditions) on the various forums, say that they feel better when they have been put on a drip for fluids. I wonder if they actually have DI and the reason why they feel better, is that their available fluid level has been ‘normalised’.

I think it was 2003/04 when I was suffering the DI type condition, or should I say it was at it’s worst then, the arrhythmias were worse then and so were the leg pains and it possibly was the start of the blood clotting issues (I was put on a maintenance dose of 75mg dispersible Aspirin daily, eventually). One thing that helped me was having a daily bacon sandwich, lol – probably the salt content helped! Do you improve when you have salty foods ?

For those whose DI type problems are brought about by cranio-cervical instability, causing problems with cerebro-spinal fluid (CSF) flow, which results in raised intra-cranial pressure, then the best treatment whilst waiting to be assessed by an endocrinologist, is a cervical collar – to help improve the CSF flow. However, you have a pituitary cyst that is a possible cause which, although it may be stable, could still be interfering with pituitary function (or communication between hypothalamus and pituitary). I know of a girl here in the UK who has the same problem.

How bad is your EDS, are you very hypermobile ?
Regards
Barbara
(UK)

[Inafog]

Thanks again. My situation is so complicated, because I have a CSF leak at the area where my neck is hypermobile. I had it patched for the 10th time about a month ago, and now have rebound high ICP…I have been trying to add salt as much as possible and using Nuun, but the high ICP causes painful headaches and eye pain. I would take Diamox to relieve that, but I am afraid because that accelerates my fluid loss… One time I lost almost 5 pounds from just 250 mg.

I just don’t no how to regulate them both, it is like they are fighting each other. I bet a fluid drip would feel good.

many many hugs to you for taking your time to explain. I am so sorry you ended up with so many complications from this. It makes me want to get this whole thing resolved quickly!

[myainsel]

could DI cause seizures? I have a daughter that is having issues with seizures and a neurologist has diagnosed her with migraines that cause seizures…partial epilepsy, but my daughter feels it has something to do with hydration. when she was little she has had to be put on IV fluids for dehydration many times, even recently she had to be given IV fluids.

[Inafog]

could DI cause seizures? I have a daughter that is having issues with seizures and a neurologist has diagnosed her with migraines that cause seizures…partial epilepsy, but my daughter feels it has something to do with hydration. when she was little she has had to be put on IV fluids for dehydration many times, even recently she had to be given IV fluids.

I am not sure about whether it can cause seizures. As far as dehydration, I am using Nuun tablets in my water to try to make sure that I stay as hydrated as possible. It makes the water taste good and helps me to drink more as well. (Get tired of plain old water) I am seeing an endo tomorrow. I will let you all know if I learn anything of interest. I do notice that I am most dehydrated in the morning, and if I take my blood pressure, it is very narrow, like 89/78. And I don’t feel well.

[Barbara]

could DI cause seizures? I have a daughter that is having issues with seizures and a neurologist has diagnosed her with migraines that cause seizures…partial epilepsy, but my daughter feels it has something to do with hydration. when she was little she has had to be put on IV fluids for dehydration many times, even recently she had to be given IV fluids.

I would just like you to consider that your daughter may be Magnesium Deficient. Have you seen Dr Diana’s video on Magnesium Deficiency ? It’s very enlightening

http://prettyill.com/videos/watch/the_magic_of_magnesium

Your daughter may be right, I looked into it and Magnesium Deficiency can lead to dehydration and seizures.
Regards
Barbara

[Barbara]

Here’s another good source of Magnesium info too:-

http://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

It talks about the difficulty in measuring our Magnesium Status, to quote:-
“Assessing magnesium status is difficult because most magnesium is inside cells or in bone. The most commonly used and readily available method for assessing magnesium status is measurement of serum magnesium concentration, even though serum levels have little correlation with total body magnesium levels or concentrations in specific tissues.”

So for those who have simply had a ‘blood test’ to measure their Magnesium status, it can leave you thinking you are ‘ok’ – when you are NOT! as was the case for me.

The document goes on to say:-
“Other methods for assessing magnesium status include measuring magnesium concentrations in erythrocytes, saliva, and urine; measuring ionized magnesium concentrations in blood, plasma, or serum; and conducting a magnesium-loading (or “tolerance”) test. No single method is considered satisfactory.”

So again, if all we’ve had is a blood test, this alone is inadequate.

It continues:-
“Some experts but not others consider the tolerance test (in which urinary magnesium is measured after parenteral infusion of a dose of magnesium) to be the best method to assess magnesium status in adults. To comprehensively evaluate magnesium status, both laboratory tests and a clinical assessment might be required.”

So, being a government document, I doubt that the doctors could argue, if you went back and asked for additional testing. It would be interesting to find out which test is more useful for those suffering with our type of condition. It might help us to narrow down what’s going wrong.
Regards
Barbara
(UK)

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