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Old 07-11-2008, 08:53 PM   #16
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Re: new MS specialist

Good to know -- and I think I made a mistake in that I should have said that it's often misdxed as Type 2.

Let's shoot for you being all solved and ready to shoot for the next season of MD, okay?

 
Old 07-11-2008, 08:56 PM   #17
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Re: new MS specialist

Sounds like an excellent plan! I'll let you know what happens monday.
Wallis

 
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Old 07-12-2008, 09:22 AM   #18
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Re: new MS specialist

Hi Wallis,
I haven't been on the boards for a while so I am catching up. I sure have missed a lot. I had a bad relapse and I am finally able to read. I see you live in California, and am curious why you have to fly to NY for your testing. Sorry I don't mean to be nosy but you could drive to az and go to barrows or the mayo. That's a lot of money to travel for dx. I hope I'm not out of line.

hotflash

 
Old 07-12-2008, 09:41 AM   #19
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Re: new MS specialist

Wallis, I didn't realize you have an appt on Monday, that's great news. I hope you get some answers soon. I'll be looking for your update on your appointment!

I've been tested for diabetes four times since 2002, and I don't have it. I've had the fasting blood sugar blood tests. I can't remember exactly what they're called, but it's where you fast, drink the nasty sugary stuff, give blood, give a urine sample, and repeat a few times. My blood sugar has always been borderline or very low. I don't know much about this, but it may be why I used to faint all the time--I haven't fainted in quite a while. But when I'm hungry, I get hostile--really hostile, which is not me! I also get shaky and lightheaded. I don't have to be very hungry to get like this, and I eat several times a day to avoid it. The three meal a day routine will never work for me. My father is exactly the same way. I haven't pursued this, and I've just learned that I have to eat a lot more. I wonder if it has something to do with my metabolism. My father and I can both eat whatever we want and not gain a pound; we're both very thin. We both have voracious appetites. If I get sick and miss a few meals, I will lose at least 5 pounds, which is way too much for me. My doctors have checked my metabolism too, several times, and it's always normal. My thyroid is just fine. Very strange, but my present doctors do not seem concerned about this at all.

Good to see you Hotflash! I'm sorry about your relapse but I'm glad you're feeling better.
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April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 07-12-2008, 10:35 AM   #20
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Re: new MS specialist

Thanks april.

I have the weight loss problem to. If I dont eat at least a couple meals a day I will lose 5 pounds. I am thin too and it bothers me since it can take months to put it back on. I have been that way my whole life. My dr said he was not concerned about it because that was normal for me. He did say however that if I lost weight even while eating or started to gain weight then he would be more concerned because that would be abnormal for me. That's why your dr isn't worried.

hotflash

 
Old 07-12-2008, 01:00 PM   #21
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Re: new MS specialist

Hotflash,
You're not out of line at all. The reason why I travel to NY is because that is where my family lives. I live in CA most of the time but since I can't really be independent at the moment, it makes sense for me to go to doctors in NY where I can be living at home and be "taken care of" so to speak by my dad.

April, sounds like you have some hypoglycemia! I did the glucose tolerance test too, I hit 314 in the second hour with 4+ glucose in my urine, and then 32 in the 3rd hour. I couldn't see anymore and was nearly unconscious. My dad was just telling me that the doctor keeps telling him that hitting the 50s isn't abnormal for some people, but I explained to him that what makes a low a low is being symptomatic, and I have symptoms in the ranges of a type 1 diabetic, I feel low and out of it in the 70s. I of course feel useless and horrible in the 50s and 40s. I also feel high and my body reacts to the highs at 200s. It's a conundrum to add onto my MS/neurological conundrum.

Oh, also I don't have the appointment for monday, I will call for an appointment on monday. On another note, with more exciting news, I got an email from one of the service dog organizations and I am going there this week for a tour of their facilities and to meet with someone about their program. Hooray! I hope I can get a dog soon, it would be the best thing in the universe for me.

 
Old 07-12-2008, 02:40 PM   #22
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Re: new MS specialist

Wallis, that's great news about the dog!

BTW, I meant to apologize for not remembering your involvement with Diabetics -- I know you've mentioned it several times before! I'm sure your knowledge has and will continue to come in handy as you move along your dx path since you can distinguish things that are or could be Diabetically related from things that are not.

 
Old 07-12-2008, 04:39 PM   #23
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Re: new MS specialist

I'm sorry I got it wrong thinking you had an appt Monday. I hope you get in soon! That's great about the possibility of a dog, let us know how that goes! None of my docs have thought my glucose levels were ever bad enough to get a hypoglycemia dx, but I know my body! I know that there is always hard candy in my purse, and that it will make me feel better if I"m feeling that dizziness and shakiness. The dizziness and shakes are different from those from MS. I can't explain this, it's just something I feel. Maybe one is just making the other worse, who knows? But I was dealing with blood sugar issues, especially fainting, way before I had an MS symptom.

Not only did my doctors dismiss it, but they didn't think it was why I was fainting either. Thankfully that has stopped, but it was scary at the time, and it never happened when I was panicky or anxious. I guess it'll remain a mystery.

Wallis, it's so nice that you have family that will take care of you!
__________________
April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 07-12-2008, 07:11 PM   #24
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Re: new MS specialist

Beary,
Don't worry at ALL about not remembering! I have such a bad memory, I didn't even remember I had previously mentioned it!! I hope it does help me on my road to dx, we'll have to see.

April,
Do you happen to know what your blood sugar actually is when you feel bad? Or what your test results are for the glucose tolerance test? Over the past year dealing with this, I've found that doctors like to dismiss things when they probably shouldn't. It may be that even if dx hypo, your treatment would be exactly the same as now: correct symptomatically, and eat small frequent meals, but it would be good to know your results anyhow, as I'm sure you know with the MS. For me, my BG is so dangerous at times that I need to check my blood sugar up to 20 times a day based on my symptoms, and I must ALWAYS check before driving or going to sleep (especially since I don't wake up from my lows). I hope you can continue to manage the hypos without making your life more difficult than it needs to be.

I'm so sore tonight. The rheumatologist I see for my enteropathic arthritis has decreased my prednisone, and it's making me feel bad, which is the last thing I think I need. I'll keep everyone posted on the dog too, I think the whole world will know when I find out more!
Wallis

 
Old 07-13-2008, 03:48 PM   #25
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Re: new MS specialist

Wallis, I happened on an MD marathon today, caught a few episodes and thought of you! In fact, the one that's on right this very minute has that woman I was telling you about, the one that has MS but was originally dxed with Lupus. Can't wait to see you on the show, LOL.

 
Old 07-13-2008, 03:58 PM   #26
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Re: new MS specialist

Beary that's hilarious! I JUST came on the boards to tell you I was watching MD and I thought the woman you know is on! How did doctors misdiagnose this as lupus? Lupus doesn't present with full body numbness!!! It actually made me SO angry to watch the doctors screw up and diagnose lupus with ONLY a positive ANA without even considering the nervous system. How ironic that we were just talking about this episode?

I wish I was able to go on MD now! :/

 
Old 07-13-2008, 04:04 PM   #27
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Re: new MS specialist

LOL, I know. I'm glad you saw it! I'll try to remember what she said about it but I DO know that a lot was edited out. I had asked her about the trauma thing because that was very interesting to me. I will research the recesses of my brain and fill in any blanks I can about the much longer story!

 
Old 07-13-2008, 04:45 PM   #28
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Re: new MS specialist

Here's some more info. on her situation as best as I was able to decipher. Because of time constraints, they stuck to only 5 years of her story, ranging from '01-'06 but she'd been having sx from the age of 14 ranging from numbness to Bell's Palsy. At 15 she had measles and during this period, she had numerous CT scans that showed nothing. She would often have periods where her leg had a "pulling sensation" that would require her to use a cane. Another thing that she dismissed at the time because there was no explanation.

Early on (I think even before the Lupus dx) she was told she had Fibromyalgia. The hook injury is actually the thing that led to the LUPUS dx. It happend while she was in Oklahoma and it was VERY hot. It was a second exacerbation that brought her to the new dx. She saw about 5 neurologists prior to seeing the one we saw on TV. NONE of them thought she had MS and dismissed the crochet hook "trigger" theory as hogwash. The doctor we saw had her bring in all her old MRIs from the last four years and saw the progression. He pointed out lesions that were PREVIOUSLY MISSED!! She also brought in her symptom journal, which dated back to 2001. He also told her that if an autoimmune disease like MS is dormant in the body, it can absolutely be triggered by an injury or stress.

There was definitely at LEAST one other time that an injury brought on an attack for her but I think even more than that.

 
Old 07-13-2008, 05:10 PM   #29
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Re: new MS specialist

Wow, that actually makes me feel more hopeful about my own situation. I feel like there's got to be someone somewhere who will connect the dots, and maybe be able to do the same thing... take a look at all of my MRIs and maybe discover missed lesions. YOu know something interesting I just thought of? When I was younger, probably 17, some moron punched me in the leg trying to give me a "dead" leg... I was wheelchair bound completely for 3 weeks, only remitting after taking yet another course of prednisone. At that time, I obviously was not wheelchair-using, or even close to as spastic as I am now. It makes you think. Another similarity to your friend: when I was 11, I had three distinct episodes of mononucleosis, exactly 10 years before the really significant disability started in my life from progressive neurological problems. Very thought provoking...

 
Old 07-13-2008, 07:16 PM   #30
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Re: new MS specialist

For me, I think this was probably a combo of a lot of things. I had Mono and I do believe that EBV can create a predisposition for MS but I think that whacking my back and living with mold in my apartment may well have had something to do with at LEAST bringing me out of what may have been a long remission. The lesions in my brain were not active at the time of my MRIs; only my orbital lesion was. I wish there was a way they could tell how old the lesions are. At the end of the day, who knows... Even those of us already with a dx have questions!

Last edited by Bearygood; 07-13-2008 at 07:20 PM.

 
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