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.
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.
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.
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
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.
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?
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!
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.
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...
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!
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...
3 episodes? Wow. That's horrible. I only ever had Mono 1 time, at age 19. It knocked me on my butt for 2 weeks solid. I could get up and walk around for 30 min a day. That was it. I was otherwise bed ridden and on Tylenol 3 for the pain. I thought nothing could be worse than that pain, until I had my headache after my lumbar puncture during my MS diagnosis.
OH yes, I know the spinal headache better than I can explain. after having the mono and then pneumonia and a killer flu for 3 weeks with fevers of 104, I had my first LP. It didn't heal. For 3.5 months. Despite 2 blood patches. I had to stay completely on my back for the whole time, including eating. I had to be homeschooled and nearly didn't move onto the next grade. The doctors thought I was faking the spinal headaches since it had ben so long until finally someone decided "hey, lets do a lumbar MRI!" and after 3.5 months they saw the leak and fixed it with a fibrin patch. That experience is why I have yet to have an LP for my MS diagnosis, because doctors don't want to do it. Spinal headaches are the worst pain known to man, literally. I'm going to have an LP soon I think and I've never been more scared for a routine procedure in my life!
OH yes, I know the spinal headache better than I can explain. after having the mono and then pneumonia and a killer flu for 3 weeks with fevers of 104, I had my first LP. It didn't heal. For 3.5 months. Despite 2 blood patches. I had to stay completely on my back for the whole time, including eating. I had to be homeschooled and nearly didn't move onto the next grade. The doctors thought I was faking the spinal headaches since it had ben so long until finally someone decided "hey, lets do a lumbar MRI!" and after 3.5 months they saw the leak and fixed it with a fibrin patch. That experience is why I have yet to have an LP for my MS diagnosis, because doctors don't want to do it. Spinal headaches are the worst pain known to man, literally. I'm going to have an LP soon I think and I've never been more scared for a routine procedure in my life!
That's a lot to go through . And I can imagine your fears now about having another LP done.
I've heard Trigeminal Neuralgia explained as the 'worst pain known to man'. I was first dx'ed with TN and I have had the stabbing searing pain down 1 side of my face before, and the headache with it, but nothing comes close to the pain I felt from the spinal headache. Shudder.
In any event, I'd still do another LP in my case, but where you had so many other complications with your's, I can understand the hesitation.
At this point, I'm not really the one hesitating. The neuro was. I mean, I'm scared of it, but I know its necessary AND I know how to fix a leak if it happens. I just need to skip the blood patches entirely and go right for a fibrin patch... and no messing around with allowing people to tell me to wait it out. I've decided that more than 24 hours of a spinal headache, I'm getting a fibrin patch.
Isn't it amazing that we deal with so much pain in our daily lives, but give me a headache and I am COMPLETELY incapacitated, spinal headache aside. A regular old headache makes me want to curl up and die!
Wallis, if you ask some neuros, MS doesn't cause pain.
Silly huh? Yes.
Thankfully I have a neuro who is completely understanding, thorough, and does listen and help treat the pain.
Speaking of headaches however... it's raining today, and due to the pressure change (had been beautiful and sunny all along) I have a bit of a headache. Nothing that's going to put me out of commission thankfully. Pop back a couple tylenol and cross the fingers.
Oh yes, I KNEW there was a reason why I came on the boards a few hours ago! Yet, unsurprisingly, I forgot to do what I came on for. I got an appointment shockingly soon! I have one on Thursday! I was really productive this morning actually, and made lots of appointments including thoracic MRI and the NO, and got all of my MRIs and records faxed to the MS specialist. And I'm trying to get into the service dog organization in a couple of days for the tour.
Yes, I have those moments FAR more than I'd like to admit. I have funny ones with my low blood sugar sometimes too! Today I tried to put the orange juice in the cupboard. And I've walked into the bathroom looking for something to eat many times when I am low. I wish I could blame it all on low blood sugar but its usually just cognitive impairment from whatever is going on with me! I will keep everyone posted with my doctor progress. I was pleased to discover the MS specialist I'm seeing is a woman! I never get female doctors. And she has clinical interests in neuroimmunology, which is definitely a good thing for me.
Yes, I have those moments FAR more than I'd like to admit. I have funny ones with my low blood sugar sometimes too! Today I tried to put the orange juice in the cupboard. And I've walked into the bathroom looking for something to eat many times when I am low. I wish I could blame it all on low blood sugar but its usually just cognitive impairment from whatever is going on with me! I will keep everyone posted with my doctor progress. I was pleased to discover the MS specialist I'm seeing is a woman! I never get female doctors. And she has clinical interests in neuroimmunology, which is definitely a good thing for me.
Definitely good!
I was so thrilled when my GP ended up being a female as well, much older woman who spends a lot of time in the hospital, so she's quite knowledgeable.
My neuro's male, and he's just an incredible person. He looked at me and said out of the blue, "You know, you're a bit grunge". I laughed really hard (I was wearing socks and sandals) and said, "You want to see grunge? I'll bring photos from when I was a teenager!".
. And I can imagine your fears now about having another LP done. 
