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Should I be concerned?

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Old 03-02-2012, 08:28 PM   #1
Join Date: Jun 2006
Posts: 367
gav_73 HB User
Should I be concerned?

For months I have been going through various neurological problems, so many that several doctors - and myself - suspected multiple sclerosis. I have been seeing various specialists to try and rule out the most obvious causes before I go see the neurologist in April. I've had various symptoms for awhile, but the latest round of symptoms have been worse than ever. And in some cases, life threatening. In addition to severe bouts of fatigue, malaise, and bowel problems, I started to experience episodes of sleep attacks, almost fainting. What's worse is that it gradually started happening every day while driving to work. It was so uncontrollable I would find myself at a dead stop in traffic physically holding my eyelids open to see before I simply passed out. This would last for about 30 minutes. Then it started happening at work and regular daytime driving - all after an excellent night's sleep. I suspected a sleep disorder and passed the nighttime study with flying colors: no apnea or notable sleep disturbances. I begged to be put on something, anything, to keep me awake. I was finally prescribed a stimulant until further investigation into narcolepsy. I took the test - and while I have not received my results, I know for sure that I had two out of five 15-20 minute naps where I reached REM sleep, criteria for a positive diagnosis for narcolepsy.

I do have a point related to anemia here, but I'm trying to provide a holistic picture of what I've been going through before I get there.

At the same time I've started experiencing these electric shock like sensations, sometimes happening 50 to 100 times a day, every time I move. They start in my face typically and send shock waves throughout my body. These zaps are not painful and last for about half a second. However when it's happening every time I move, it stuns you and makes work or anything else difficult to do. When it's bad I don't even want to get up to go to the bathroom. And to make things worse, I also started experiencing a form of restless legs syndrome, but in my arms and between my shoulders. It's enough to make a person go absolutely insane.

Ok, now...why am I on this site begging for advice? I went for an annual exam. After I told my gyno what I had been experiencing she was very concerned and wanted to get me into see a neurologist ASAP. In the meantime, she thought it would be beneficial to do a lab work up to rule out a B12 deficiency. When she got the results, everything was fine except for a borderline moderate/severe result for anemia. All I know is the hgb level was at 9. She knew that my cycle wasn't heavy because I was actually in there complaining that they've been much lighter recently. What the heck?

When I started looking up the symptoms for low red blood cell/hemoglobin, I found many symptoms I've been experiencing are similar to anemia. Even the electric shocks I've been having, as well as severe fatigue that can be so bad that it can mimic narcolepsy! I was shocked to say the least.

The thing is, since the hgb was only at a 9, could that level possibly causing SO many severe symptoms? Since my doctor was a gynecologist, she really didn't put the two and two together as far as symptoms related to anemia. I've been so bothered by these symptoms that I'm afraid to drive, and figure at any time I'm going to be "shocked" all day. And finally, as the narcolepsy symptoms had subsided on the stimulants, I'm starting to fall out at almost the exact time the medication tapers off, around 3pm. I feel nauseous and have also lost 10lbs in 2 weeks, although I could stand to lost a little weight.

She recommended over the counter slow FE and she wanted to check it again in a month. I have not given blood, do not have heavy cycles, just had a colonoscopy so all is well there, and I've actually recently changed my diet to a high iron diet, spinach, leafy greens, and healthy portions of meat, and multi-vitamins. Shouldn't that have helped before I went in and had this result? It had only been two weeks since changing my diet to a more healthier one, but I have also always maintained a diet full of beans, red meat, etc for at least a year.

Has anyone experienced anything like this? Could this be the mysterious illness that has been plaguing my life for months? And since it's only at a 9, should I be having such severe symptoms already? I'm so confused.

Any advice will be greatly appreciated. I apologize for such a long post, but I felt it was necessary to give an overview of what all I've been going through to see if you think that a hemoglobin count of only 9 could cause so many problems. Does RBC counts fluctuate throughout the day? I wasn't experiencing any symptoms when I had my blood drawn; could it actually be lower than that and she just caught me on a good day and time? I'm at my wits end. ((sigh))

Thanks for listening.

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Old 03-05-2012, 08:41 AM   #2
Join Date: Jun 2006
Posts: 367
gav_73 HB User
Re: Should I be concerned?

Hi all ~

I was just checking in and wanted to follow up to my post and noticed, unfortunately for me, that no one has posted any comments about my concerns and symptoms. I'm wondering if it's because no one is familiar with any of these symptoms as they relate to anemia; was my post too long, etc?

I'm supposed to see a neurologist in April and wanted to bring up the anemia as a possible cause of the symptoms so I won't have to waste a lot of time (and $$$$) looking for something that may be easily explained.

Anyway, any advice would be greatly appreciated. I would also like to hear your stories and experiences about chronic anemia (as I have experienced some of these symptoms for years, on and off). Also, I would like to know your thoughts on my "low" hgb level of 9 and whether or not I should be concerned about that and what in the world could be causing it if I'm not bleeding anywhere. I should also add that I've lost another 3 lbs over the weekend. I'm by no means complaining, but I'm not sure of why the sudden weight loss when I've been trying for years LOL

Thanks again for listening!

Last edited by gav_73; 03-05-2012 at 10:11 AM.

Old 03-07-2012, 10:22 AM   #3
Join Date: Dec 2011
Location: Maine
Posts: 4
AmyJ123 HB User
Re: Should I be concerned?

It sounds like you are going through a heck of a time! I just joined on here myself. I don't know how much help I will be. My overall anemia is low but not severe. But my ferritin level (iron stores) are only a six. My B-12 was low at 185 back in december. Back in december I was sick all the time, exhausted all the time, and getting a little worried about how low energy and miserable I felt for so long. I however, did not have MANY of the symptoms you mentioned. no shocks or narcolepsy like tiredness. Mine was just a general exhaustion at all times, a rapid heartbeat, and difficulty breathing with exertion (I say exertion but i was so bone tired it was hard to walk up my stairs to put the kids to bed, or read them a book). I DID have numbness and tingling in my arms and hands. I was told that chronically low b-12 can cause neuro problems and damage and they started me on b-12 injections. the numbness is much better, i am not sick all of the time, but i still do not "look" well, very low energy, tired all the time, and i do get confused or foggy in the head. now they are talking iron infusions. i should mention i had gastric bypass, so none of this is a huge surprise, i MOST LIKELY have an absorbtion problem from the surgery. with you though, if they can't explain WHY, i would undergo ANY tests they reccomend and do whatever they tell you to do or not to do until they figure this all out. please let us know how it all turns out!

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gav_73 (03-07-2012)
Old 02-08-2013, 10:31 PM   #4
Join Date: Dec 2012
Location: Orange County, CA
Posts: 2
HappyPlace HB User
Re: Should I be concerned?

Hi there!

I'm too sleepy (not a good intro, lol) to write much right now (it's late here) but I have your symptoms! Well, those and more!

I had low iron and anemia, but now feel like I almost have narcolepsy and/ or severe hypoglycemia. At night, when overtired, I get hypnogogic hallucinations (google it) where I seem to start dreaming before I'm fully asleep (though my eyes are closed).

I also used to have the satellites (electric shock symptom, but that's stopped now). I have really bad GERD that medicine doesn't seem to treat well, though I try and eat SUPER healthy. I became vegan 5 months ago, but am not sure if it's helped me. I am in my mid thirties and love to exercise and, despite my complaints, I look healthy.

What happened with your doc visits? I dislike going to the doc (though I do go, when I have or need to).

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