Neurologist, B-9 deficiency, Absence seizures, and Sjogren's

[cccourt1942]

I am in a state of shock. 

I don't sleep.  Well, I sleep...but I fall asleep easily, awaken, and at times take a sleep aid, other times not.  I wake up at 2 or 3 at least twice a week and never go back to sleep.  I "get" up by 3:30 or 4 on those days.

In the meantime, about 4 years ago I had my first "event" of being lost.  This has happened to me exactly 3 times.  None of the times lasted more than 7 to 10 minutes. 

A year and a half ago I was dxed with SjS.  At that time, I had already decided I needed to be tested for Alzheimer's.  Seriously.  With SjS came a myriad of symptomatology which explained almost everything I had gone through for over 30 years.  One symptom since birth!!  Of course one of the first symptoms I latched onto was "brain fog".  I had gone through a forgetful period during menopause...but pretty much was over it after M.  Then..about 10 to 12 years ago it returned.  I thought little of it since I was in my 60s by then.  It began to occur more often.  Then those "events" began.  I rationalized I was OLDER...and it happened.  The best "treatment" was the release of iPhones.  Oh yea.  I could look up anything, anywhere...if I could hold a thought long enough. 

So...here I am in a new place..with a group of doctors which could choke a cow.  Gads.  Each time I see one, I am referred to another.  All this stuff keeps falling into place: Endocrinologist = Hashimoto's dx, Internist (as my GP) confirms --oh dear...can't remember all of them, (all accompany SjS), and then finally the Internist and Rheumatologist refer me to a neurologist for SLEEP.  They don't want me taking meds at night.  I spend less than 45 minutes with the neurologist and he smiles as he gives me an Rx for Xanax (2.5mg) for four months.  He says as little as that is there is no problem.  BUT....he zeros in on the other stuff and says I must have an EEG.  He thinks I am having "events" which are waking me up.  So I go this last week.  And here I am, this afternoon, ....diagnosed with absence seizures.  These are quite common in children, and I have actually suggested to parents for several children over the years to check with their doctors who were dxed with them. 

The neurologist had stated "something" seemed to be waking me up.  I said, "duh-take your pick:  get up to pee, need water, turn over and aching shoulder OR hip scream at me, and so forth and so on."  Now I know...MRI will be done next week...but that isn't the most unbelievable outcome of neurology visit: I am NOT deficient in B-12...but I AM deficient in B-9 (L-methylfolate?).  I know: I hear/see so many of you take folic acid.  Have I mentioned in the last half dozen years I have lost so much hair ...I actually have about 1/4 the amount of hair on my head that I had 5 or 6 years ago.  Once I got the thyroid info, I thought THAT was the hair loss question answered.  Not so.  Or not the only reason.

I "knew" something was wrong...memory wise...recall functions.  I am stunned.  Actually I am stunned there was something else found...after this plethora of doctors I thought???What ELSE can they find?  Oh..in the midst of all this info, I am told:  this is wonderful news as medication will control them.  There is no cure for Alzheimer's!

Please..those of you taking folic acid (I will be taking an Rx: Deplin) is it for anemia or something else?  Who tells you to take it..or is it just amongst routine supplements for sjoggies?    Should I add this to my regimen?

What is left?  Any experiences shared will be appreciated.
c3

[Jasper]

"Please..those of you taking folic acid (I will be taking an Rx: Deplin) is it for anemia or something else?  Who tells you to take it..or is it just amongst routine supplements for sjoggies?    Should I add this to my regimen?"
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I take a complete B Vitamin supplement (from Life Extensions). It contains 400 mcg of Folate. I have been taking a B Vit supplement for decades. It is not prescribed by a doctor but my doctors are well aware that I am taking it and they have no objections.

I looked up Deplin (L-methylfolate). I will copy and paste the link to a couple pages about it. I find the information quite interesting and informative. It seems to be by prescription only, so the site is not selling the drug (so I think it is okay to post the link to the information).

"The importance of L-methylfolate is that it, unlike folic acid, can cross the blood brain barrier. It has been shown that many people have a genetic error called the MTHFR polymorphism that limits their body?s ability to reduce folic acid into L-methylfolate. Other risk factors including certain medications, diseases, lifestyle habits, and age may also increase an individual?s risk of having a less than optimal amount of this necessary chemical, L-methylfolate, in the brain."

Certain medications may interfere with folate:

    Anticonvulsant medications used to control seizures and other conditions such as lamotrigine (Lamictal), valproate/divalproex sodium(Depakote), and carbamazepine (Carbatrol, Epitol,Tegretol)
    Methotrexate (Rheumatrex, Texall) which is commonly used for psoriasis and rheumatoid arthritis
    Sulphasalazine (Azulfidine) for inflammatory bowel disease and rheumatoid arthritis
    Oral contraceptives (birth control pills)
    Metformin (Fortamet, Glucophage, Glumetza) is used to treat type 2 diabetes
    Fluoxetine (Prozac, Sarafem) is an antidepressant that works as a serotonin reuptake inhibitor (SSRI)
    Niacin (Niaspan, Slo-Niacin) and fenofibrates (Tricor, Trilipix) are commonly used to lower cholesterol
    Warfarin (Coumadin) is an anticoagulant that prevents blood clots due to irregular heartbeat, prosthetic heart values and heart attack.
    Isotetrinoin (Accutane, Amnesteem, Claravis, Sotret) a retinoid medication for severe acne

Some diseases have been associated with low folate:

    Diabetes
    Atrophic gastritis
    Crohn?s disease
    Colitis
    Renal failure
    Hypothyrodism

Age

    L-methylfolate in the brain decreases with age

Genetics

    Up to 70% of patients with depression have a genetic mistake, called the MTHFR polymorphism. It is an enzyme defect that compromises the body?s ability to break down folate (from the diet or from synthetic folic acid found in vitamin supplements) into the L-methylfolate the brain needs to make neurotransmitters.

Also, smoking, alcohol, and poor nutrition.


http://www.deplin.com/folate-for-depression/

http://www.deplin.com/deplin-and-depression/how-deplin-works/#InfoBox

[Carolina]

Absence seizures?  Well at least you have an explanation? 

I'm now looking this up, of course.  Ad indeed they are most common in children.I have heard of them in children.  I assume that you will take an anti seizure medication, of course.

Actually I take an anti seizure medication for the pain and discomfort of my Small Fiber Neuropathy. 

I've had two EEG's, one that was done on an outpatient basis (an hour or so) and one that was part of a sleep study and lasted for 8 hours or so, last year.

I do not have any indications of seizures.  This was reassuring because the first neurologist who correctly diagnosed my Profound Peripheral Neuropathy also diagnosed constant seizure activity in my brain from the EEG he conducted in 2010.  So I was mildly worried that he might have been correct, at least partially.

And yes, time to put your worries to rest for a while C3.....and we ALL have the longest list of doctors and new things are stumbled across all the time.

The worst is the 'incidentalomas'  Things found on a test that weren't even what was being looked for, but seem like a problem, then disappear on the next test, but of course something ELSE is found on that one, and so on.

However, my CVID (Immune Deficiency) was found by my Rheumatologist when I was 69, and I futzed around for 3 years before accepting the diagnosis and getting treatment.

So, isn't it better to have things found and treated?  I think so.

Hugs,  Elaine

[Kathy57]

C3,

Sorry you are having such a tough time.  I'd rather have absence seizures than Alzheimer's!  Hopefully the new med/ supplement will help.

Wish I had great words of wisdom, but I don't.  Hope you can adjust to this and get a handle on it soon. 

I always appreciate your comments and advice!

Kathy

[Sjocool]

I'm currently taking folic acid everyday while I'm on methotrexate. My rheumatologist told me it's resupplying my body from what the methotrexate is doing. I've only been taking it about two weeks now.

[cccourt1942]

Correction:  This a.m. I received my "documentation" (physician's notes) regarding my EEG.  When the nurse called yesterday, I am the one who jumped to the term "absence" seizures.  In turn, she used absence seizures for the remainder of our conversation.  Well...today's notes state "partial onset seizures with localization related epilepsy" (this means it showed up on the left side only.  An MRI will be the final confirmation test as I understood.  This makes SO much more sense as "absence" seizures (historically) are found in the population before 18 years even though they are found within other ages.  I don't know if I have said this, but now that I am under this "group" of physicians, and their access to my records through the portal of said clinic, it reminds me of a Dr. House team!!

Thx all for your comments and information.
ccc