Old 10-03-2008, 05:58 PM #1 (permalink)
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Unhappy so my DR. says, “We have to rule it out.”


Thank you all for being here at this forum, and thank God for the Internet and for the proliferation of information.

Please bear with me as I ask some questions and provide some information about myself.

About me
I’m a Caucasian Male age 31. I’m 5’6” 150lbs. I have four children ages 16 months to eight years. I’m happily married and we are very active in church and volunteerism. I’m a general contractor in the Baltimore area performing renovations. I’ve never been sick except for appendicitis and the usual colds/stomach bugs. But when I was 20 I sustained a very serious head injury that was so severe that I lost my sense of smell. I eat healthy and have always exercised. Between the kids, major renovations on our home, home schooling, employees, customers, bills, and my current health issues I know that I’m experiencing some higher levels of stress then I'm use to.

The beginning of this until now

About this time last year I stopped working and lay down in the middle of the workday. I just couldn’t go on. I immediately scheduled an appointment with a Doctor. I told her about this fatigue as well as some balance and cognitive issues. She ordered some blood tests, an MRI, an EEG and eventually a visit with a neurologist. I was told the blood tests were normal, the EEG was normal, but the MRI showed a small brain legion. The neurologist found nothing.

Even though the Neurologist found nothing, my Dr. suggested that I may have Multiple Sclerosis. She gave me a referral to Johns Hopkins MS department. I wanted a second opinion. Upon the suggestion of a relative I saw a Lymes Disease specialist (board certified MD). He was real good. He found that I have a vitamin D issue (23ng/ml.) The D had fallen to that level since my first test about 6 months prior. All the Lymes tests were negative. He also mentioned that my B12 seemed unusually low at 391 pg/ml. I have been able to raise that to 544 through oral supplements.

I began taking 2000IU of oral Vitamin D each day and within a short period of time I felt much better. My strength returned and the fatigue no longer prevented me from working. But as my fatigue subsided, I noticed other things that may have previously been less important. Things like those funny twitches in my left calf, they had begun to appear in my right calf as well. I noticed an increased soreness and slight weakness as well as coordination and balance issues. Recently I’ve noticed that just about every muscle in my body either cramps or feels like it’s about to spaz at one time or another on any given day.

Some Questions
Has anyone heard of the babinski’s sign? I tried searching for it in this forum and had no success. The reason I ask is I’ve heard that people with ALS show a positive. I do not have a positive babinski’s sign and as far as I can tell there is no clonus.

How about reflexes? Two Drs. have told me that I have normal reflexes. How important are reflexes in the findings? When do they change in people with ALS?

Does anyone know of other possibilities? I’ve had these fasciculation’s that started constantly firing about a year ago in my left calf almost unnoticeable. Now they are in both calves and they are very pronounced. I also have inconsistent twitches in my upper legs, stomach, arms, and now in my face that is accompanied by some weakness. I’ve had a hoarseness and acute pain in my throat that has lasted for over 6 weeks.

Some other issues that have developed

Increased nearsightedness and multiplying floaters
Testicular Microlithiasis – Painful
Short term memory and concentration issues – may be from stress
Mercury levels at 12.9 Ugl – EPA says 58 Ugl is safe
Sinusitis – Showed up in the MRI
I seem to have hypoglycemia
One Dr. told me that my thyroid was slightly enlarged but THS was normal
Inconsistent joint pain – Hip, elbow, heel
There are other minor things.


Thanks in advance.
Jason
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Old 10-03-2008, 07:08 PM #2 (permalink)
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Jason,

Welcome to the forum, What do you mean by you seem to have hyopglycemia?

Symptoms of hypoglycemia people experience: hunger, nervousness, perspiration, shakiness, dizziness, light-headedness, sleepiness, confusion, difficulty speaking, and feeling anxious or weak.

Your reflexes are normal which could be a good thing. Reflexes are brisk in ALS.

Where is the lesion on your brain? Is it in a spot that correlates with any of your symptoms.

The hoarsness and acute pain in your throat could be from the sinusitus.
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Old 10-03-2008, 08:47 PM #3 (permalink)
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Hi Jason,

People with ALS often have a combination of upper and lower motor neuron signs which can be accompanied by a positive babinski sign (toes going up). But there are those with bulbar onset that do not have a positive babinski sign.

You mentioned an MRI finding a brain lesion, but the neurologist found nothing. How did he determine this? Did he repeat the MRI with contrast perhaps? When they were ruling out things, did you have a lumbar puncture? That is very important in diagnosing MS and also autoimmune diseases like CIDP which can present with your symptoms. However, people with CIDP often have diminished refexes. Just reading through your symptoms, it sure sounds like you could have some sort of autoimmune thing happening. And I am unclear from reading your posting whether you ever got seen at John Hopkins? Second opinions with neurologists are a very good thing to consider in circumstances like yours, and especially with neurologists that are in neuromuscular disease units of major hospitals. We dilly dallied around with my husband for a couple of years trusting in the misdiagnosis of the first neurologist, and only got to the bottom of things after the assessment at the neuromuscular disease unit. Good luck.
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Old 10-04-2008, 10:19 AM #4 (permalink)
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Originally Posted by crystalkk View Post
Jason,

Welcome to the forum, What do you mean by you seem to have hyopglycemia?

Symptoms of hypoglycemia people experience: hunger, nervousness, perspiration, shakiness, dizziness, light-headedness, sleepiness, confusion, difficulty speaking, and feeling anxious or weak.

Your reflexes are normal which could be a good thing. Reflexes are brisk in ALS.

Where is the lesion on your brain? Is it in a spot that correlates with any of your symptoms.

The hoarsness and acute pain in your throat could be from the sinusitus.
Dear Crystalkk

Thank you for your response.

I wanted to answer your question about hypoglycemia. When I say I seem to have it, I’m being somewhat cautious, but the facts are I have all the symptoms you mention. In fact, the severe head injury I sustained in college was from an episode with low blood sugar. This is what the doctor told me anyway. What happened is this. I was finishing my workout alone in the gym and I began to feel really nauseous, dizzy and weak. I found a garbage can to vomit in and that’s the last thing I remember seeing before I awoke in my dorm room covered in blood. I staggered out into the hall where a student found me all dazed and confused. He brought me to the ER where they were totally baffled by my situation. They found that I had a torn eardrum and a cracked skull. I found out later that there was blood all over the floor in the gym where I remembered being last. The only explanation we could come up with is that I passed out and simply fell directly backwards.

You have a good question about the brain legion. I’ve wondered about weather my injury has anything to do with this legion. I’ve tried to get answers from my Drs., but the one is bent on Lymes even though all 6 tests are negative. The other is bent on MS even though there is nothing unusual in a neurological exam. According to the MRI, the legion is approximately 8x4mm. It’s in the lower most scan. It’s in the anterior white matter, what ever that means.

I have an appointment with Johns Hopkins’s neurology, but I have to wait until mid January. In the meantime I’m grasping for anything that will help me feel like it’s not ALS.

Do you know anything about fasciculation’s in ALS? My twitches never stop in my claves, but they do quiet down with inactivity. My weakness and cramping is really hard to know. I work very hard with my hands performing renovations, so I wonder sometimes weather or not my weakness and cramping is normal. I guess I’m the only one that can answer that, but do you know how these thing start in people with ALS?
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Old 10-04-2008, 10:45 AM #5 (permalink)
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Hi, Jason ... About the low blood sugar: You said the severe head injury I sustained in college was from an episode with low blood sugar. This is what the doctor told me anyway.

Doctors can diagnose low blood sugar very easily with a glucose tolerance test. Did your doctor give you that test? It takes a few hours, but it shows how your body reacts to fasting and how well it processes sugars. I've never heard of injuries such as you describe caused by a sudden episode of low blood sugar in someone with a healthy metabolism, but I could be wrong.

I'm no doctor, but I have had the glucose tolerance test and had a doctor work with me on keeping my blood sugar in the healthy range.

If you do have this metabolism problem, your doctor should work with you on a diet plan ... usually small meals and protein and complex carb snacks throughout the day ... to keep your blood sugar on an even keel.

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Old 10-04-2008, 11:20 AM #6 (permalink)
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Jason,

Is it the lyme dr that is bent on lyme? Lyme hides in the body especially if you had it a long time.
It doesn't always show in the blood work. Lyme is the great imitator, and you do have alot of the symptoms.
Do you know which labs you were tested through?

I am not a dr. put I think if you were having facilations non stop for a long period of time and it was from als you would have weakness and atrophy in the calfs. ALS starts differently with everyone there is no perticular pattern. Twitches, cramping and weakness can come from so many different things I wouldn't even think of ALS. That is the last thing on the list there are no tests for it . Its a matter of rulling everything else out.

You might want to consider a good enocrinoligist in the meantime, He will be to help you with the metobolic issues. He will be able to tell you if you have hypoglocemia, check your thyroid . Vitiamin D issues also have to do with metobolic problems.

Hang in there stress will only make your symptoms worst.
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Old 10-04-2008, 08:57 PM #7 (permalink)
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If your B12 is low and vit D just replace it and see how you feel Your thyroid and low blood sugar can be giving you symptoms
this doesnt sound like ALS
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Old 10-05-2008, 08:18 AM #8 (permalink)
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Originally Posted by BethU View Post
Hi, Jason ... About the low blood sugar: You said the severe head injury I sustained in college was from an episode with low blood sugar. This is what the doctor told me anyway.

Doctors can diagnose low blood sugar very easily with a glucose tolerance test. Did your doctor give you that test? It takes a few hours, but it shows how your body reacts to fasting and how well it processes sugars. I've never heard of injuries such as you describe caused by a sudden episode of low blood sugar in someone with a healthy metabolism, but I could be wrong.

I'm no doctor, but I have had the glucose tolerance test and had a doctor work with me on keeping my blood sugar in the healthy range.

If you do have this metabolism problem, your doctor should work with you on a diet plan ... usually small meals and protein and complex carb snacks throughout the day ... to keep your blood sugar on an even keel.

BethU
Greetings BethU and Thanks for your reply.

I’ve been told that the glucose tolerance test is no longer considered reliable and it is being phased out in most areas. My Dr. would not use it. What we did find is low (54) and high (135) blood sugar. It’s pretty strange, but it goes up and down and I really feel it. My blood tests for diabetes are normal.

The injury itself was not caused by the low blood sugar. According to the Dr’s theory, my blood sugar fell so low that I passed out. When I passed out I hit the concrete floor very hard.

As far as the diet plan goes. I changed my diet about 8 years ago in order to control my sugar issues. I began eating Tuna each day. Mercury was another thing that we looked into, but there is a lot of conflicting information about what is a safe amount to eat as well as in blood levels.

Thanks for your helpful advice.
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Old 10-05-2008, 08:26 AM #9 (permalink)
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Jason,

Is it the lyme dr that is bent on lyme? Lyme hides in the body especially if you had it a long time.
It doesn't always show in the blood work. Lyme is the great imitator, and you do have alot of the symptoms.
Do you know which labs you were tested through?

I am not a dr. put I think if you were having facilations non stop for a long period of time and it was from als you would have weakness and atrophy in the calfs. ALS starts differently with everyone there is no perticular pattern. Twitches, cramping and weakness can come from so many different things I wouldn't even think of ALS. That is the last thing on the list there are no tests for it . Its a matter of rulling everything else out.

You might want to consider a good enocrinoligist in the meantime, He will be to help you with the metobolic issues. He will be able to tell you if you have hypoglocemia, check your thyroid . Vitiamin D issues also have to do with metobolic problems.

Hang in there stress will only make your symptoms worst.
It is the Lymes Dr. that is bent on Lymes disease. Dr. Singleton has had Lymes disease. He was misdiagnosed with MS. He did his own research and self treated. He has a book on this experience, but I don’t remember the name of it. Dr. Singleton preformed two Western Blot test. He shipped the test to a lab in California. He also preformed three other tests and I have since had anther Wester Blot. In addition to these, I was on heavy antibiotics for two months in an attempt to wipe out the Lymes if it was there.

Thanks for your insights. I was hoping someone would say something like, I wouldn’t even think of ALS. It’s hard not to for me because one of my customers just died from ALS. My wifes uncle doesn’t have long to live because of ALS and I just heard that another one of my customers has been diagnosed. It’s been hard to avoid it, but the stats are really against it being ALS. What are the chances that I know that many people with it and have it myself? I should start playing the lottery.
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Old 10-05-2008, 08:29 AM #10 (permalink)
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If your B12 is low and vit D just replace it and see how you feel Your thyroid and low blood sugar can be giving you symptoms
this doesnt sound like ALS
Greetings Patricia1,

I'm glad to hear that you don't think this sounds like ALS. The more I hear that the better I feel. What makes you say that?
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Old 10-05-2008, 10:49 AM #11 (permalink)
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Jason,

After the 2 months of antibotics did they do the bloodwork again for lymes. Sometimes when you
take the antibotics it brings the lyme bacteria out and it will show in the bloodwork after a couple of weeks off the antibotics. Did your symtoms get worse while on the antibotics after about 4 wks (a hex reaction).
Are you still seeing the Lyme dr.

I started researching the lyme thing myself because I am not getting any answers myself after 2 years of symptoms.

It doesn't sound like ALS to me either thats why I suggested an endocrinolgist, (it sounds like it could be metobolic) while you are waiting for your appointment at hopkins with the MS specialist.
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Old 10-06-2008, 07:41 AM #12 (permalink)
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Crystallk,

After the antibotics I did have another westernblot as well as some other Lymes tests and they were all negative.

How has your research into Lymes gone? Have you had any tests that direction?
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Old 10-06-2008, 09:18 AM #13 (permalink)
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Jason,

Basicaly I just starting looking deeper into it, because after 2 years of symptoms and no answers.

In the beginning I just had the elisa through quest lab and it was tested in my spinal fluid in April of 2007.
which either one is very reliable they say only 30% accurate through spinal fluid.

Did you have to pay out of your pocket for the dr and the testing from what I understand the LLDR
don't take insurance.

I know of someone that it took seven years to get a positive lyme test, was so sick he thought he was going to die.
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Old 10-06-2008, 06:28 PM #14 (permalink)
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Dr. Singleton does not take insurance and I also had to pay the Rx. The total for everything was a little over $1000. It was worth it to me because I was hardly able to work at the time and he was the one who discovered the Vit. D issue.

Did your friend have twitches? It seems like I’m noticing them in new places every day. The strange muscle cramps are also happening more frequently. I’ve also been having a hard time swallowing (saliva, not food.) But on the bright side I’m still working. Last week we hung sheetrock against the ceiling. That is really hard on the shoulder and arm muscles but we did it. I’m still walking a mile three times a week. I used to be able to run a mile in about 5:15 but it takes at least twenty now. I just tell myself that I can’t ruin today worrying about tomorrow; the time is far to valuable. Why waste a healthy day if there are precious few left? I find myself reveling in being able to swing my children around in a circle. You know, I couldn’t do that last year. I want to enjoy today to the fullest and I find myself doing that by doing the same old things I take for granted. Things like wrestling time with the boys or mowing the lawn. When I think about it, I’ve trusted God with my life, I know I can trust Him with my death and life after weather it been sooner or later.
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