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Old 01-21-2013, 11:15 AM   #1
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Looking for personal opinions and experiences

Hi there-
So I'm writing this post to get some feedback on folks' opinions and experiences. I'm currently seeing a neurologist and undergoing some tests, but I have no definitive answers, and am concerned about whats been going on.

So, here are the facts and issues:
I'm a 22 year old male, who received a diagnosis of Essential Tremor (ET) at the age of 5. As a child and teen, my hands shook, and I had a quaver in my voice which were exacerbated by all the usual triggers (stress, tiredness, hunger, anxiety).
About 2-3 years ago, I developed a pretty pronounced head tremor, as well as "shaky legs". My hands and voice continue to be issues, but the head shaking draws a great deal of attention and is quite embarrassing. Typically, Essential Tremors (ETs) do not "progress", like mine did. However, the diagnosis still stands.

Other symptoms which have appeared in the last 24 months are:

frequent nighttime urination
dizziness*
lack of coordination*
difficulty finding words
frequent forgetfulness/memory issues
fatigue
frequent tripping

(*not constant/ peaks and valleys)

I also had an MRI performed which showed "multiple punctuate foci visible with absent GRE signals in all areas of the brain". It was explained that these were "old" bleeds, but their cause and age is unknown. The neurologist said it was within "normal range", but typically not seen in someone my age. I have not had any concussions or head trauma. I had an MRI in 1996 to help diagnose the ET, and no lesions were noted. Today I had a second MRI, and am scheduled for a cat-scan to try and determine the age and make up of these lesions.

While I don't want to sound doubtful, I do have reservations about whether MS is being overlooked due to my previous Essential Tremor diagnosis. I was put on a beta-blocker to help with the ETs, but it made my blood pressure average at 85/45, and did not help my head shaking, so the medication was discontinued.

I'm curious to see if there are any other folks who are around my age that have had, or have similar symptoms--especially men. From what I've read, MS affects women 3x's more often, and I feel like I'm an anomaly, and concerned that there is more going on than just essential tremors.

In addition, what are the "tell tale" MRI signs, if any?

 
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Old 01-21-2013, 11:42 AM   #2
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Re: Looking for personal opinions and experiences

Welcome.

An MRI is not a specific test for MS. It can show lesions and should be done with and without contrast. As for lesions and CTs, a CT would move away from neurology and towards other probable causes.

As lesions form with MS, you will get new ones and the old ones may appear as scars or "black holes" The active ones will "Light up" with the contrasting dye. ET may be linked in the direction of MS, but it is not MS. As to measuring the age of lesions, the only way is to have an MRI on a regular basis and then to look for new lesions. There is no way to measure the age of a lesion without a benchmark to view. If you were 5 when the MRI was made and you had an MRI annually, then you could find the age more accurately, but it would still not be a specific test for MS.

MS lesions do have certain sizes and shape ranges, but this again does not guarantee or deny MS. Lesions can come from vascular problems, migraines, infections, high fever.....it is difficult.

IF you suspect MS, then you should see an MS Specialist (a neuro who deals with MS). Let them know your symptoms, your history, and if possible a journal or diary of your symptoms. The journal can indicate symptoms, when they present, the severity, etc.

You noted stress and anxiety. Stress and anxiety are two causes which affect many people every day. If you have MS, stress and anxiety can add to your problems by causing new symptoms to present or worsening existing symptoms or attacks.

If you do not have MS, stress and anxiety can mimic MS. This is something that your MS Specialist can help you sort out. Before a diagnosis can proceed further, the MS Specialist may have you take some anti-anxiety medication or to seek counseling. If you are lucky, it is simply anxiety and stress and you can be easily treated. If it is not just anxiety or stress, then you will be that much closer to a diagnosis.

If you had an MRI in 1996 and there were lesions, but your subsequent MRI showed no lesions, something is wrong. Lesions do not disappear. Old lesions from childhood will remain as scar tissue or black-holes. I would not trust the radiologists report and I would most definitely encourage you to seek the counsel of an MS Specialist.

If you cannot find one, you can contact your local MS association or MS society office and they can assist you. Your doctor may also be able to refer you to one. Lastly, if you share your general area of residence (not your address because you need to protect your privacy), someone here might know an MS Specialist.

Thanks for posting here. I certainly hope we can help you and thank you for sharing.
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Old 01-21-2013, 11:48 AM   #3
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Re: Looking for personal opinions and experiences

Thanks for your quick response!

I should clarify the MRI history. I had an MRI in 1996 in which there were no lesions noted. I then had an MRI done in Nov 2012, where they found those multiple punctuate foci. Today, I had a 3rd MRI done to try and clarify the images from November.

As treatment for the tremors I was prescribed Ativan to take on occasion, when my tremors flare up. This (unlike the beta blocker which was a daily dosage), actually helps the tremors for a few hours, but does nothing to help all my other very annoying symptoms. However, I do not have any anxiety disorder, etc.

 
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Old 01-21-2013, 12:32 PM   #4
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Re: Looking for personal opinions and experiences

Thanks for those clarifications.

I would look back at your personal medical history to see if there was something which happened between 1996 and 2012. This hindsight review (forensic review) could provide you with clues which you or the doctors could have overlooked.

I hope your MRI today lends you some answers too! I had a friend with tremors which he had from kindergarten until he was 30 and they just stopped. Probably a different generation, but we, his friends, always thought it was just nerves. He certainly burned through calories quickly and the cafeteria ladies were always giving him extra food to try to get him to gain weight.

I am certainly glad to hear that you have been checked for anxiety. Your low blood pressure is something that I experience on occasion, but it is due to missing a meal or if I did not eat enough at breakfast.

Let us know what you find out and then you might have a better idea the direction you are going!
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Eternally blessed and eternally optimistic!<><

 
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Old 01-21-2013, 06:15 PM   #5
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Re: Looking for personal opinions and experiences

Sj22606,
Hi and welcome to healthboards. Alot of what you wrote is accurate, the stats about MS and men vs. women; however MS is also what is known as a snowflake disease, as in no two cases are alike...so anything is possible with MS.

As Jayhawk stated, if you feel that MS should be considered, you really need to see a MS specialist- a regular Neuro, unless he has alot of MS patients, isnt qualified- and probably isnt looking. Can you get a referral to an MS specialist in your area?

As far as the lesions go- a CT scan isnt going to tell you anything neurological, and its not going to tell you anything about the age of the lesions- it may however, pick up abnomalities which are not neurological in nature, and thats probably what they are looking for- either for answers or to rule things out.

Get the test done , see what they tell you, ask about MS and let us know how it goes...

Ativan, by the way, is an antianxiety drug. The fact that it helps with the tremors is interesting- more than likely taking the edge off and allowing your body to relax....but its not a drug that can "cure' anything.....taking it long term, simply means you wil continually need higher doses....its not a long term answer, but if it helps, keep taking it as prescribed.

Please let us know what you hear from the next round of tests.
Nikki
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