Possible PP MS?

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Possible PP MS?

Postby Covart » Fri Dec 23, 2011 6:24 pm

Hello all. I am a military member who has been in since 1990 and have been going through testing for a couple of years. I have finally been to a premier neurosurgeon (a civilian! thank god!) who was the first doctor to piece together the puzzle of my symptoms to what is probably PP MS, due to my age of nearly 40. My MRI also showed a highlighted area in the lower left quadrant of the overhead view. I will be getting a spinal tap to confirm the diagnosis, hopefully in the next few weeks, but the military is slow to work, so it may take longer. That is the price of free healthcare, so I can't complain.

For those that have more knowledge at this than me, since I have only known about MS now for approx 24 hours. My symptoms started 2 years ago with chronic lower back pain and a couple of times a year my throat felt like it was closing up and I couldn't swallow very easily, but would subside after a week, giving me the impression I Just thought I was sick. Strep throat cultures always came back negative.
Fast forward to this past August and September and literally in one weeks time, my left leg lost all strength and now muscle mass as well, and is painful almost every day. I am on Vicodin for the back and leg pain. I have to walk with a cane, as there are times that the leg just gives out on me and I would fall without the cane. In this same time period, my right eye has gone from 20/30 vision to the point that I can barely see the top line of an eye chart it is so blurry. Left eye is still 20/30. Lower back pain persists. Vertigo comes on at random times, regardless of where I am or what I am doing. It is difficult to start urinating, but once I start, I'm fine. Two weeks ago, my right hand began trembling uncontrollably, but quit within a day. A few days ago there was slight trembling that stopped within a couple of hours. Hasn't happened again.
On top of all that, I have difficulty expressing words at times. I know what I want to say, but the word doesn't come out. It takes a few seconds to say something. Additionally, I have trouble remembering things. If I don't write down things like a grocery list when I am thinking of something to get, I will forget. A lot of my Long term memories are also gone, like childhood, high school and college.

Sorry for the long post. The neurosurgeon thinks MS is a possibility, but because I also have a brain tumor located on the part of the brain that controls movement (my left leg issues) it has made it difficult for him to be more certain without a spinal tap. I figure for those of you that have a lot more knowledge and experience could look at the symptoms I have described and give me your feedback. Thank you in advance for your inputs.
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Re: Possible PP MS?

Postby MarkLavelle » Sat Dec 24, 2011 10:26 am

You've probably already heard that every case of MS is different.

Upon being told it "looks like MS" just over a year ago, I was sure I must have the primary progressive type because of my age (54) and what seemed to me to be continuously worsening symptoms. But by the time I had a definite diagnosis it was called RRMS.

I would think a brain tumor would complicate the heck out of your diagnosis & treatment, though. Are you able to get the tumor out (surgically or "cyberknife")?

Good luck,
Mark

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Possible PP MS?

Postby Taurus » Sat Dec 24, 2011 11:17 am

Please consider taking LDN, before going for the crab drugs (Only Capaxone could be taken with LDN) . It would take care of your tumor also.
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Re: Possible PP MS?

Postby Covart » Sat Dec 24, 2011 1:07 pm

MarkLavelle wrote:You've probably already heard that every case of MS is different.

Upon being told it "looks like MS" just over a year ago, I was sure I must have the primary progressive type because of my age (54) and what seemed to me to be continuously worsening symptoms. But by the time I had a definite diagnosis it was called RRMS.

I would think a brain tumor would complicate the heck out of your diagnosis & treatment, though. Are you able to get the tumor out (surgically or "cyberknife")?

Good luck,
Mark

Tumor can never be fully removed due to it's location next to the main artery that runs down the center of the brain. They can excise as much as possible, then follow on radiation of some sort to prevent future growth, depending on if it is benign or cancerous.

Thank you for your input. Let me ask you, since we are both in that pp ms age bracket, did you have sudden onset of symptoms, i.e. within a couple of weeks?
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Re: Possible PP MS?

Postby Covart » Sat Dec 24, 2011 1:16 pm

Taurus wrote:Please consider taking LDN, before going for the crab drugs (Only Capaxone could be taken with LDN) . It would take care of your tumor also.

Great info! Thank you, I just reviewed a bunch of info on LDN.
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Re: Possible PP MS?

Postby milesap » Sat Dec 24, 2011 1:41 pm

Also look into CCSVI go to the ccsvi locator at http://ccsvi-ms.ning.com/?xg_source=msg_mes_network. Your nuero will not support this effort but it has helped many significantly. Go to you tube and the thisis ms site to see the before and after results. If it was me get the veins checked asap and take the LDN. If your diagnosis is PPMS based on the spinal tap results expect to take a crab drug called copaxone.
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Re: Possible PP MS?

Postby MarkLavelle » Sat Dec 24, 2011 8:25 pm

Covart wrote:Tumor can never be fully removed due to it's location next to the main artery that runs down the center of the brain. They can excise as much as possible, then follow on radiation of some sort to prevent future growth, depending on if it is benign or cancerous.

Thank you for your input. Let me ask you, since we are both in that pp ms age bracket, did you have sudden onset of symptoms, i.e. within a couple of weeks?

I'm really sorry to hear about the tumor. I hope they're able to get a whole lot of it (be sure to ask about cyberknife), and whatever is left stays small...

I went from intermittent paresthesia ('tingling' isn't really the right word) in my feet on Thanksgiving 2009 to all 4 limbs (and all the time) by Feb. 2010, with additional symptoms coming and going ever since (spasticity and one I haven't figured out how to describe that I think of as "electric torso"). Looking back, I might have had a few brief episodes of spasticity (but not anything I'd call an "attack") before that.

One of the first things I learned after my dx was that every new episode of symptoms is not necessarily due to new nerve damage. It's usually just the same old damaged nerves looking for new ways to entertain you... ;)

Best of luck,
Mark

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Possible PP MS?

Postby Covart » Sat Dec 24, 2011 9:07 pm

MarkLavelle wrote:
Covart wrote:Tumor can never be fully removed due to it's location next to the main artery that runs down the center of the brain. They can excise as much as possible, then follow on radiation of some sort to prevent future growth, depending on if it is benign or cancerous.

Thank you for your input. Let me ask you, since we are both in that pp ms age bracket, did you have sudden onset of symptoms, i.e. within a couple of weeks?

I'm really sorry to hear about the tumor. I hope they're able to get a whole lot of it (be sure to ask about cyberknife), and whatever is left stays small...

I went from intermittent paresthesia ('tingling' isn't really the right word) in my feet on Thanksgiving 2009 to all 4 limbs (and all the time) by Feb. 2010, with additional symptoms coming and going ever since (spasticity and one I haven't figured out how to describe that I think of as "electric torso"). Looking back, I might have had a few brief episodes of spasticity (but not anything I'd call an "attack") before that.

One of the first things I learned after my dx was that every new episode of symptoms is not necessarily due to new nerve damage. It's usually just the same old damaged nerves looking for new ways to entertain you... ;)

Best of luck,
Mark

Thanks for the input Mark. My left leg weakness, walking with a cane and right eye blurriness was something that happened really quick. Basically within a couple of weeks. 4 months later and now my right hand tremor comes and goes, but the blurry vision and left leg weakness has stayed the same getting no better or worse. Vicodin and epidural injections help manage the leg pain. The aphasia is also a real treat.

Of course, I am still waiting on a confirmed diagnosis, but all the symptoms seem to point directly to MS. Again, thanks for your input. It's good to be able to talk with others going through the same things. Happy holidays.
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Re: Possible PP MS?

Postby Rebecca » Wed Dec 28, 2011 10:28 am

Hi,

Please don't be too afraid of the label "primary progressive". Also, please do check out http://overcomingmultiplesclerosis.org . A lot of folks have gotten rid of tremors and other problems you describe using an ultra healthy living program of the type described by the professor of medicine who writes this site.

Good luck! Remember: when the going gets tough, the tough get going. I do a blog too on MS that focus on all of the things we CAN DO to beat MS.

Rebecca Hoover
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Re: Possible PP MS?

Postby Covart » Fri Dec 30, 2011 4:29 pm

Rebecca wrote:Hi,

Please don't be too afraid of the label "primary progressive". Also, please do check out http://overcomingmultiplesclerosis.org . A lot of folks have gotten rid of tremors and other problems you describe using an ultra healthy living program of the type described by the professor of medicine who writes this site.

Good luck! Remember: when the going gets tough, the tough get going. I do a blog too on MS that focus on all of the things we CAN DO to beat MS.

Rebecca Hoover

Thank you for the info Rebecca. Don't suppose you have a link to your blog?
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Re: Possible PP MS?

Postby Rebecca » Mon Mar 18, 2013 2:42 am

I am sorry it took me so long to respond. I did not see the question before just now. The link is: http://intelligentguidetoms.wordpress.com. I hope you find this helpful.
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