Nervous....tests coming fast and furious

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Nervous....tests coming fast and furious

Postby Duck1014 » Fri Jan 03, 2014 12:52 pm

Hi,
It's been a strange few months for me. I'm a 42 year old male and I've been having some degree of trouble recently.

It all began when I quit smoking in July. While I was reducing what I smoked (from about 16/day), I started to feel lightheaded (almost drunk if you will). I also started to have problems concentrating, started to get much more tired than ususal and got quite constipated. I figured the problem was simple nicotine withdrawl and told myself to buck up, it'll pass.

2 months later, it didn't. Everything I felt gradually got worse, with other items popping up. First and foremost my fine motor control started to deteroriate (I'm an avid pool player, and very good at it. Over the course of a few months I now consider myself below average on most days, however from time to time my game is what it was.). I also started to get more tired and need more sleep. So much so to the point that I'll fall asleep when I get home from work sometimes (about 5:00 and not get up until 5:30 am). Once I get up, I'm still tired.

I went to my family doctor, he figured it was withdrawl, recommeded I try either using a Nicotine Patch or Caffene (stimulant to replace Nicotine). I tried Caffene, which helped for a few days, then went back to the same as before. Tried the patch for 2 weeks. That helped for a few days, then went back to the same as before. I reported this to my doctor, he thought it may be anxiety caused by lack of Nicotine, so he put me on Clonazepam to see if that would help at all. Again it seemed like it helped for a while but after a few days I went back to the same as before.

Went back to my doctor, he ordered some blood tests and EEG and a CT scan. The EEG took a long time, however my blood tests came back normal and my CT scan came back negative. I also started to get headaches (which I'd never had any in my entire life). Then a few days before the EEG, something new happened...

Nearly everything from my waist down went mildly numb. Wasn't like I couldn't feel anything at all, but nothing felt right. Couldn't feel light touches, couldn't feel it when I urinated or deficated (still constipated though...that hasn't been right in months). This went on for a couple days before the EEG and I talked to the technician about it. He told me that I had to see my doctor again urgently. The next day I went back to my doctor, he perscribed an MRI. Went to the emergency room, waited for about 17 hours (during that time some feeling came back and was replaced with light tingling sensations where I was numb) they did a bunch of tests, like touching my nose, walking heel-to-toe kind of thing (no idea what they made of them). They then admitted me as an outpatient and ordered a MRI for my brain and spine. It took about 10 days or so to have my legs and private areas come back to normal.

Shortly after this I started to find that if my legs or arms were still for any more than a few minutes, they would start to tingle, and sometimes start to hurt. While in the MRI, the only thing I could think is 'don't move...don't move...' My shoulders have been stiff' and my neck has been sore steadily for about a week.

I had a pre-booked appointment 2 days after my brain MRI. The doctor delivered the results to me yesterday and I apparently scanned clean on my spine, but about 20 lesions were found in my brain (up to 9mm in size). Inital suspision is MS or Vasculitis. They wanted me to do a lumbar puncture (scheduled this Monday) and have ordered more blood tests which I have to go to a lab to get done.

What should I expect to happen, or questions that you think I should ask?
Duck1014
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Joined: Fri Jan 03, 2014 10:57 am

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Re: Nervous....tests coming fast and furious

Postby lyndacarol » Fri Jan 03, 2014 3:46 pm

Duck1014 wrote:Hi,
It's been a strange few months for me. I'm a 42 year old male and I've been having some degree of trouble recently.

It all began when I quit smoking in July. While I was reducing what I smoked (from about 16/day), I started to feel lightheaded (almost drunk if you will). I also started to have problems concentrating, started to get much more tired than ususal and got quite constipated. I figured the problem was simple nicotine withdrawl and told myself to buck up, it'll pass.

2 months later, it didn't. Everything I felt gradually got worse, with other items popping up. First and foremost my fine motor control started to deteroriate (I'm an avid pool player, and very good at it. Over the course of a few months I now consider myself below average on most days, however from time to time my game is what it was.). I also started to get more tired and need more sleep. So much so to the point that I'll fall asleep when I get home from work sometimes (about 5:00 and not get up until 5:30 am). Once I get up, I'm still tired.

I went to my family doctor, he figured it was withdrawl, recommeded I try either using a Nicotine Patch or Caffene (stimulant to replace Nicotine). I tried Caffene, which helped for a few days, then went back to the same as before. Tried the patch for 2 weeks. That helped for a few days, then went back to the same as before. I reported this to my doctor, he thought it may be anxiety caused by lack of Nicotine, so he put me on Clonazepam to see if that would help at all. Again it seemed like it helped for a while but after a few days I went back to the same as before.

Went back to my doctor, he ordered some blood tests and EEG and a CT scan. The EEG took a long time, however my blood tests came back normal and my CT scan came back negative. I also started to get headaches (which I'd never had any in my entire life). Then a few days before the EEG, something new happened...

Nearly everything from my waist down went mildly numb. Wasn't like I couldn't feel anything at all, but nothing felt right. Couldn't feel light touches, couldn't feel it when I urinated or deficated (still constipated though...that hasn't been right in months). This went on for a couple days before the EEG and I talked to the technician about it. He told me that I had to see my doctor again urgently. The next day I went back to my doctor, he perscribed an MRI. Went to the emergency room, waited for about 17 hours (during that time some feeling came back and was replaced with light tingling sensations where I was numb) they did a bunch of tests, like touching my nose, walking heel-to-toe kind of thing (no idea what they made of them). They then admitted me as an outpatient and ordered a MRI for my brain and spine. It took about 10 days or so to have my legs and private areas come back to normal.

Shortly after this I started to find that if my legs or arms were still for any more than a few minutes, they would start to tingle, and sometimes start to hurt. While in the MRI, the only thing I could think is 'don't move...don't move...' My shoulders have been stiff' and my neck has been sore steadily for about a week.

I had a pre-booked appointment 2 days after my brain MRI. The doctor delivered the results to me yesterday and I apparently scanned clean on my spine, but about 20 lesions were found in my brain (up to 9mm in size). Inital suspision is MS or Vasculitis. They wanted me to do a lumbar puncture (scheduled this Monday) and have ordered more blood tests which I have to go to a lab to get done.

What should I expect to happen, or questions that you think I should ask?


Welcome to ThisIsMS, Duck1014.

Although you have not specifically asked for any opinions on what has happened in the last few months, I hope you will be receptive to my comments.

I have never been a smoker, but I understand it is difficult to quit – I commend you for quitting! I have heard that some people need to have something in their hands and mouths; have you been snacking more? Eating more carbohydrates, sweets, artificial sweeteners – foods that raise insulin levels (in response to higher blood sugar, or just in response to trans fats, MSG, foods with wheat or artificial sweeteners)? Your insulin level may be elevated and the resulting insulin resistance may cause your tiredness and sleep problems. Excess insulin affects the muscles, too. When more blood tests are ordered, ask your doctor for a "fasting blood insulin test" –the optimal result you want is 3 UU/ML or lower; this test is NOT the same as a blood sugar test. (By the way, always ask for copies of your blood test results – you should be able to get copies of those already completed – and keep your own file at home.)

You said that if your "legs or arms were still for any more than a few minutes, they would start to tingle, and sometimes start to hurt" – numbness/tingling/even pain in the hands/arms or feet/legs is called peripheral neuropathy. The University of Chicago suggests the following guidelines when investigating peripheral neuropathy; compare the blood tests and examination that your doctors have performed:

http://peripheralneuropathycenter.uchic ... #bloodtest

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

All the best to you. Let us know how it goes.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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lyndacarol
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Re: Nervous....tests coming fast and furious

Postby Duck1014 » Fri Jan 03, 2014 4:29 pm

Hi, thanks for the reply.

No, there has been no snacking out of the ordinary. My diet is unchanged since before I quit. My family doctor has already ruled out insulin related problems. I'm getting more bloodworm done for some other things like vitamin b12, ordered by the hospital.

My main worry at the moment is the multiple lesions in my brain... Just have to wait and see what other tests come up with.
Duck1014
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Posts: 2
Joined: Fri Jan 03, 2014 10:57 am

Re: Nervous....tests coming fast and furious

Postby lyndacarol » Fri Jan 03, 2014 4:53 pm

Duck1014 wrote:No, there has been no snacking out of the ordinary. My diet is unchanged since before I quit. My family doctor has already ruled out insulin related problems. I'm getting more bloodwork done for some other things like vitamin b12, ordered by the hospital.


The fasting blood insulin test is not routinely done and must be specifically requested. You have a very good family doctor if he has already ruled out an insulin problem with this blood test or imaging (CT scan or ultrasound) of the pancreas! My doctor required a little nagging to get these things done!

The University of Chicago guidelines include testing for antibodies related to celiac disease (however, these test results are notoriously inaccurate). A better way to determine if a person is gluten sensitive is simply to follow a gluten-free diet for at least six weeks. Gluten sensitivity can appear at any time in life. The atypical or extraintestinal form can manifest with neurological symptoms. Definitely something to discuss with your GP!
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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lyndacarol
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