Some Answers, More Questions

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Some Answers, More Questions

Postby LoveActually » Sat Jun 27, 2009 9:51 am

I really don't know where to begin. Let me start by listing my symptoms, most I have experienced off and on for years. This is a complete list of everything I deal with. Not a list of me matching up what may be MS related.

1. Numbness in Arm & Hand (started in April 09)
2. Blurred Vision (years)
3. Vertigo (years)
4. Heat Sensitivity (started in late teens. 26 now)
5. Trouble Sleeping (last 4 years)
6. Hands Shaking (started early this year)
7. History of Migraines (diagnosed in 2006)
8. Frequent Headaches (since teens)
9. Hallucinations (couple of years)
10. Body Twitch (couple of years)
11. Bruise Easily (couple of years)
12. Poor Circulation (year or so)
13. Pins & Needles on Hands and Feet (started early this year)
14. Complete Loss of Peripheral Vision (occured once in 2007)
15. Pain in Legs-hours at a time (couple years now)
16. Ringing/Buzzing in Ears (couple of years)
17. Floaters (couple of years)
18. Dizziness/Lightheaded when standing-daily occurence (year or so)

So, I saw my Doc on Friday and got results to my EEG, EMG, MRI and Labs. The Results...

Labs:

I have High Cholesterol
I DO NOT have Lyme Disease or Lupus
My Kidney's and everything else are fine

EEG:

Confirms I am having seizures lasting about 7-8 seconds. Doc say's it could be related to Epilepsy but she wants to view my scans first. I didn't know I was having seizures and am wondering if all the times during the day that I'm experiencing blurred vision, if that's a "symptom" of the seizure.

EMG:

Confirmed I have Carpel Tunnel in both wrist (knew that). She also said I appear to have the beginning or Peripheral Nerve Damage.

She did the EMG for the tingling in my finger tips and hands. I also have tingling in my toes but she only did the upper body EMG. She told me what I needed to do to get my cholesterol down which is no problem. She also said I needed to start coming in for B12 shots. I've seen B12 mentioned here frequently and I'm wondering what it does/helps? She also said I needed to get on a Woman's MultiVitamin immediately.

The thing that pissed me off is she didn't even have my scans. She told me (at the appointment) to bring in a copy of my scans so she can look at them. She read the radiologist report and pretty much told me what I had already figured out. There is definitely one 7x9mm spot. She didn't want to say anything further until she saw the scans.

So here are my questions...

What does B12 help/do?
Do any of you (diagnosed with MS) suffer from seizures?
Have you had the possible epilepsy diagnosis before your MS diagnosis?

Of course, I have a shit load of questions pop into my head after the appointment. I'm going back on Monday to give her my scans and then we'll see what she say's after viewing those. Some of you may have heard my previous rants about her lack of listening and I just can't understand how Epilepsy & Peripheral Nerve Damage could produce all those symptoms. Some of which don't seem related to those 2 possible diseases.

Just wanting some experienced feedback, any little bit helps. Thank you!
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Postby whyRwehere » Sat Jun 27, 2009 11:52 am

Well, I believe that lacking B-12, you can have the same symptoms as MS. And even if you do have MS, you probably lack B-12, so either she thinks that you may just need the B-12, or that if you are worse off, then it will help you out. I wish my husband was getting those shots...I'll have to ask the GP.
I still have never heard of hallucinations being a symptom...did you mention them to her?
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Postby cheerleader » Sat Jun 27, 2009 12:00 pm

Dear Love...
Hello from another southern California momma. I post on here, my husband's the one with MS. He had most of the same issues as you. Was diagnosed with MS 2 years ago at the age of 43, but he had loss of peripheral vision, fatigue, headaches, trouble sleeping and depression for years. Not sure if you've checked out the CCSVI threads, but we found out that both of his jugular veins were blocked. He was born that way...and over the years the lack of drainage created problems with his eyes and brain. We're not sure if this is the "answer"..but in my hubby's case, he's had relief by opening up his jugs with stents. Read some of the info, see what you think. Maybe you can get your jugulars checked out by your docs, make sure you have adequate circulation.....they might be interested in the research.
Wishing you answers and health,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LoveActually » Sat Jun 27, 2009 12:48 pm

Why,

I honestly can't remember if I got the word "Hallucinations" out during the 5 second window she gave me to fill in the symptoms blank. I know it was high on my symptoms list, I think it's pretty serious so I wanna say I did but I'm unsure. Maybe memory loss should be added to the list but I can't remember if/what I forgot. LOL!

Cheerleader,

Thank you for the info about the CCSVI threads. I haven't read them yet but I will make my way over there right after this. It's crazy all the other issues that may be hiding within your body causing all these annoying symptoms. I feel like I should have a full size chart of myself so I can mark all the areas with issues and then have the doc write down all the causes related to each issue. Then maybe I could keep all this stuff straight.
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Postby whyRwehere » Sat Jun 27, 2009 12:52 pm

Seeing as you are in Cali. It would be interesting if you were seen by Dake. If nothing was found by him, then you would probably be suffering from some other illness, according to the theory (which I believe 100% in, by the way).
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Postby LoveActually » Sat Jun 27, 2009 1:02 pm

Who's Dake and where in Cali is he located? And the theory? By what you said, I would guess the theory is, "If Dake can't find MS in someone, they don't have MS." Or, I may be way off here.
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Re: Some Answers, More Questions

Postby Lyon » Sat Jun 27, 2009 1:05 pm

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Last edited by Lyon on Sat Nov 26, 2011 10:55 am, edited 1 time in total.
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Postby LoveActually » Sat Jun 27, 2009 1:39 pm

Lyon,

Thank you! And you are absolutely right, I am, without a doubt, extremely frustrated. I do appreciate my doctor issuing all the necessary tests, which is why I'm still around to see them through.

After receiving my (partial) results, the first thing I said to the Hubs was, "I can't believe I have high cholesterol." LOL! That was the unexpected part. With what I experience everyday, it was easy to understand that something isn't right in my head.

I appreciate everyone's input and (as bad as this may sound) I enjoy hearing everyone's experiences. When I first heard the words "Possible MS", I went MS-tigating crazy. Now, I just want to know what I'm approaching regarding certain test and hear people's views on my situation. This forum is definitely a much needed release. So, thanks.
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Postby Lyon » Sat Jun 27, 2009 1:57 pm

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Postby scorpion » Sat Jun 27, 2009 4:01 pm

Hey LoveActually,

Please be careful about the CCSVI thread , Dr. Dake, Zamboni, etc. NONE of this has yet to be scientifically proven or accepted by the majority of people. Sorry but I think it is irresponsible to suggest a procedure that has NO proven effectiveness against MS. Until there is some proof please hold off on making that call to Dr. Dake. If you do have MS your neuro will discuss with you legitimate treatment choices that are presently offered. There are also clinical trials that look EXTREMELY promising(Campath,stem cells, new oral meds.etc.) that you may be interested in as well!!! Good luck.
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Postby LoveActually » Sat Jun 27, 2009 4:04 pm

Thanks for the advice Lyon & congrats on quitting smoking. I've been trying to get my Mom to quit for a while, she's been smoking for more then 35 years. But you have to really want it to be successful with it.
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Postby LoveActually » Sat Jun 27, 2009 4:19 pm

Scorpion,

I definitely won't be going through any trials anytime soon, if at all. My plan is to see what my Neuro say's about my scans, get my B12 shots (because I figure those will only help me) and then find a Neuro that specializes in MS and go from there.

I haven't gotten very far on the CCSVI thread. I went to it, looked over one post and said to myself, "Shoot, I don't understand any of this." Can we cuss on this thread? Because I haven't said shoot since I was like 12 but I don't want to offend anyone either.

All the information is great but can be very overwhelming. I'm gonna go back to the CCSVI thread and just start from the glossary and move my way down. But no worries, I'm not the type to volunteer myself to science. I'm a wimp.
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Postby Lyon » Sat Jun 27, 2009 4:33 pm

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Postby LoveActually » Sat Jun 27, 2009 4:43 pm

Lyon,

She's tried many times, using the patch, the gum and weening herself. She use to smoke 2 packs a day but for the last 7 years or so, she has moved down to 1 pack a day. It was a great improvement 7 years ago. She may be smoking more now and I wouldn't know since I'm no longer living with her.

Her first day's were always the worse. Me and my sis would stay away when Mom was trying to quit. She went into major "B" mode, if you get what I'm saying. I'll definitely send your recommendation to her.
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Postby patientx » Sat Jun 27, 2009 6:13 pm

Scorpion:

Thanks for posting this. I think it's a little crazy to start recommending unproven treatments for MS, when it's far from certain this is a case of MS, or to recommend using the CCSVI theory to rule out MS.

LoveActually:

A vitamin B12 deficiency can cause neuropathy (numbness and tingling in the extremities), and other nervous system problems. But I think the deficiency has to be pretty severe. What exactly were your B12 numbers? Looking back at my blood test results, the lab lists normal range as 211-911 pg/mL.

Sorry I don't know much about the seizures. But it sounds like you should really quiz you neuro the next time you see her.
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