Hello all,
I wish I was here under more pleasant circumstances. Any information anyone can provide me with, I will greatly appreciate.
Here's my story:
I began taking vitamins B6 (100mg) and Folic Acid (400 mcg) on approximately September 6, 2010. On September 11, 2010, I was rushed to the hospital and was diagnosed with having had a Grand Mal Seizure. I informed the ER doctor that I knew it was the vitamins because they were the only change to my routine medically. I don't have a history of seizures, in my family, etc. I was 35 when this happened.
I went to see my primary physician who then referred me to a neurologist, who then sent me for several tests, and he agreed with me that the seizures were caused by the pyridoxine in B6, or so he thought. I've had 3 MRI's and 3 EEG's. All negative.
I had another seizure 4 months later in January 2011, then a 3rd seizure in March 2011. I then began taking seizure medication and had several more tests conducted to determine a cause. I had a vitamin D deficiency(11.8), a high sed rate(28), and a high TSH Thyorid Level(6.040). Those are just a few of the tests I can think of off hand. The past few years, I've been experiencing some lactose intolerance. After reading Freddd's information, I thought I may have a B12 deficiency because of my symptoms below:
I already had a few symptoms that seemed to be unrelated: tingling in my fingers and toes (for over a decade-off and on), ezcema, tinnitus. The aformentioned symptoms have gone on for years, but the symptoms below mostly came about after the first seizure. And it seems like they come one after the other. It's scary because I don't know what's going to happen to me next.
1.) Dizziness/Blurred vision
2.) Headaches
3.) Eye Spots
4.) Tinnitus
5.) Seizures
6.) Tingling on the tip of the tongue, tingling on the tips of the fingers, and tingling on the back of the thigh.
7.) Eczema
8.) Thyroid disturbance
9.) White spots on skin
10.) Genital pain
11.) Popping Joints/bone pain/shoulder pain/arthritic pain
12.) Thumb pain from palm to wrist
13.) Difficulty swallowing sometimes
14.) Striations in fingernails
15.) Myclonic jerks right as I fall asleep
16.) Dyspepsia-previously upset stomach, nausea, and vomiting-on rare occasions
17.) Irritability
18.) Thick, jellied, sticky mucus
19.) Poor hair condition
20.) Metallic taste in mouth
21.) Splits/sores at the corners of mouth
22.) Abdominal pain
23.) Dj vu experiences
24.) Swollen glands (lymph nodes)-ENT performed a biopsy to rule out cancer
*Gastritis/Acid Reflux/occasional heartburn-caused malabsorption.
*Unexplained cysts-may not be related at all
I have seen 3 neurologists (one at the Mayo clinic), an endicronologist, a gastroenterologist, a hematologist, an ENT, (a toxicologist looked at my records, but said he couldn't help), and my hematologist is going to refer me to a rheumatologist, even though I've been checked for several autoimmune diseases and other ailments:
1.) Check B12 and homocysteine and methylmalonic levels
2.) B6 level.
3.) Anemia-pernicious, macrocytic, Iron deficiency anemia
4.) Calcium, Iron, Vitamin D (25OH) test.
5.) Mercury (Amalgam) poisoning.
6.) Celiac Disease.
7.) Lyme Disease (Western Blot assay antibody test).
8.) Crohns Disease.
9.) Parasite (H pylori organisms).
10.) Graves Disease.
11.) Lupus.
12.) MS.
13.) Arthritis.
14.) Gastritis-Atrophic or Erosive and low stomach acid.
All were negative. In July 2011, my Vitamin B12 level was 826 and my Folate (Folic Acid) Serum was 16.5. A little after that, I started taking sublingual B12 Cyanacobolamin, until I realized I should take Methylcobolamin. My doctor finally approved my UMMa test, but that was after I already had about 2 B12 shots--don't know if that mattered or not. The UMMa had different results, so I don't know what I would need to include in this post to help me.
I also know that the seizure meds I'm on (Lamictal-300mg) can decrease my B12 as well. As of a week ago, my blood serum B12 is over 1999 ((because I have been getting Hydroxocobolamin shots every month and taking Jarrows Methyl B12 (5000mcg) daily)) so my hematologist told me to stop taking it. And he told me to stop taking Iron as well, even though my iron level was 235. He said that the total iron was normal and I didn't need a supplement. **sigh** I can't remember everything else I needed to mention right now.
I'm so confused and scared. Can someone please help me? Doctors won't listen. Symptoms are becoming more frightening. And my husband and I would like to actually have children. I've never been sick in my life before this(I didn't even get headaches!) and I don't know what to do.
I know there are some very smart folks on here that can help. Thanks!
I wish I was here under more pleasant circumstances. Any information anyone can provide me with, I will greatly appreciate.
Here's my story:
I began taking vitamins B6 (100mg) and Folic Acid (400 mcg) on approximately September 6, 2010. On September 11, 2010, I was rushed to the hospital and was diagnosed with having had a Grand Mal Seizure. I informed the ER doctor that I knew it was the vitamins because they were the only change to my routine medically. I don't have a history of seizures, in my family, etc. I was 35 when this happened.
I went to see my primary physician who then referred me to a neurologist, who then sent me for several tests, and he agreed with me that the seizures were caused by the pyridoxine in B6, or so he thought. I've had 3 MRI's and 3 EEG's. All negative.
I had another seizure 4 months later in January 2011, then a 3rd seizure in March 2011. I then began taking seizure medication and had several more tests conducted to determine a cause. I had a vitamin D deficiency(11.8), a high sed rate(28), and a high TSH Thyorid Level(6.040). Those are just a few of the tests I can think of off hand. The past few years, I've been experiencing some lactose intolerance. After reading Freddd's information, I thought I may have a B12 deficiency because of my symptoms below:
I already had a few symptoms that seemed to be unrelated: tingling in my fingers and toes (for over a decade-off and on), ezcema, tinnitus. The aformentioned symptoms have gone on for years, but the symptoms below mostly came about after the first seizure. And it seems like they come one after the other. It's scary because I don't know what's going to happen to me next.
1.) Dizziness/Blurred vision
2.) Headaches
3.) Eye Spots
4.) Tinnitus
5.) Seizures
6.) Tingling on the tip of the tongue, tingling on the tips of the fingers, and tingling on the back of the thigh.
7.) Eczema
8.) Thyroid disturbance
9.) White spots on skin
10.) Genital pain
11.) Popping Joints/bone pain/shoulder pain/arthritic pain
12.) Thumb pain from palm to wrist
13.) Difficulty swallowing sometimes
14.) Striations in fingernails
15.) Myclonic jerks right as I fall asleep
16.) Dyspepsia-previously upset stomach, nausea, and vomiting-on rare occasions
17.) Irritability
18.) Thick, jellied, sticky mucus
19.) Poor hair condition
20.) Metallic taste in mouth
21.) Splits/sores at the corners of mouth
22.) Abdominal pain
23.) Dj vu experiences
24.) Swollen glands (lymph nodes)-ENT performed a biopsy to rule out cancer
*Gastritis/Acid Reflux/occasional heartburn-caused malabsorption.
*Unexplained cysts-may not be related at all
I have seen 3 neurologists (one at the Mayo clinic), an endicronologist, a gastroenterologist, a hematologist, an ENT, (a toxicologist looked at my records, but said he couldn't help), and my hematologist is going to refer me to a rheumatologist, even though I've been checked for several autoimmune diseases and other ailments:
1.) Check B12 and homocysteine and methylmalonic levels
2.) B6 level.
3.) Anemia-pernicious, macrocytic, Iron deficiency anemia
4.) Calcium, Iron, Vitamin D (25OH) test.
5.) Mercury (Amalgam) poisoning.
6.) Celiac Disease.
7.) Lyme Disease (Western Blot assay antibody test).
8.) Crohns Disease.
9.) Parasite (H pylori organisms).
10.) Graves Disease.
11.) Lupus.
12.) MS.
13.) Arthritis.
14.) Gastritis-Atrophic or Erosive and low stomach acid.
All were negative. In July 2011, my Vitamin B12 level was 826 and my Folate (Folic Acid) Serum was 16.5. A little after that, I started taking sublingual B12 Cyanacobolamin, until I realized I should take Methylcobolamin. My doctor finally approved my UMMa test, but that was after I already had about 2 B12 shots--don't know if that mattered or not. The UMMa had different results, so I don't know what I would need to include in this post to help me.
I also know that the seizure meds I'm on (Lamictal-300mg) can decrease my B12 as well. As of a week ago, my blood serum B12 is over 1999 ((because I have been getting Hydroxocobolamin shots every month and taking Jarrows Methyl B12 (5000mcg) daily)) so my hematologist told me to stop taking it. And he told me to stop taking Iron as well, even though my iron level was 235. He said that the total iron was normal and I didn't need a supplement. **sigh** I can't remember everything else I needed to mention right now.
I'm so confused and scared. Can someone please help me? Doctors won't listen. Symptoms are becoming more frightening. And my husband and I would like to actually have children. I've never been sick in my life before this(I didn't even get headaches!) and I don't know what to do.
I know there are some very smart folks on here that can help. Thanks!