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New with questions...
Hi all! My name's Jaimee. I'm in the process of being checked for Myasthenia Gravis after 3 yrs of misdiagnoses, theories and assumptions. I go to the Neuro Monday and really have no idea what to expect, but I'm hopeful for answers. I'm a mom of 4 little ones and this has been a struggle. I think more than the weakness, trouble and sometimes even pain, I struggle most with people not seeming to believe that I'm having trouble! I guess because they can't always see my weakness or difficulty or because they haven't seen me at my worst... I am wrestling with my attitude right now because I would love to just rub it in everyone's faces when I finally do get a diagnosis. But more than anything, I want to feel better and stronger and more able to care for my family and follow through with the things that I'm passionate about.
Anyway, I'm wondering-- What can I expect from my first appt. with the Neuro? It's been 2 years since I've been to a Dr. and the last round eliminated MS, Meniere's disease, fibromyalgia, lyme disease, and chronic fatigue syndrome... but brought up the question of Hemiplegic Migraine (w/o head pain)-- I know! Crazy! If I am not in horrible shape at the time of my appt, will she still be able to do all the tests or whatever is necessary to find an answer? I have been in kind of a chronic state of low level symptoms (following a more severe exacerbation) since the beginning of March when I had a head cold, attended a birth as a doula and then allergy season hit hard and heavy. My biggest fear is that I will get in there after all this waiting and hoping and still have no answer. No way of coping. If you read this all the way through, thanks. I can be long-winded. And I am a bit anxious about what the outcome of this appt. will be. I thought maybe to be amongst people dealing with some of the same issues may be helpful. |
Hi, Jaimee, and welcome! Boy oh boy, do I ever know how you feel. It has meant so much to me just to be taken seriously, and my biggest fear has been that the doctor would conclude that it's "all in my head."
I was surprised to hear you were tested for Meniere's. I thought for a while that that's what I had, because I was having trouble keeping my balance (though I never had vertigo). It took me a long time to understand that my tiltiness was due to weak side and back muscles. I start tilting at the waist, and have to sort of stagger so as not to fall over, especially while walking. This isn't really ataxia, or disequilibrium, as I am my doctors had thought; it's just weakness of the muscles that hold you upright. I hope some of our really knowledgeable members can answer your questions about what to expect from the neurologist, and whether the tests will be accurate if you're not in the middle of a real flare-up. |
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Hi, Jaimee. Welcome to the forum.
I'm sorry it's taking you so long to find answers. Not surprised though! You didn't really say what your symptoms are. Can you? MG is all about muscle weakness that gets worse with activity and better with rest (relatively). Ptosis (toe-sis) is drooping eyelids from muscle weakness. People with MG often have double vision (DV) because their eyelid muscles don't focus properly due to the weak muscles. If you have DV, it will go away when you close one eye (with MG). Muscle relaxers are a big no-no with people who have MG. Our muscles are already weak. Muscle relaxers make muscles even weaker. So that fits an MG picture. Make sure the neuro knows what happened after you took this drug. Muscle relaxers often make people nauseated. Any feelings of being nauseous are not MG-related. Any stomach problems are usually not MG-related. Though you need acetylcholine (ah-seat-ill-co-lean) to make stomach acid. A stomach can be upset if you don't have enough stomach acid. Have you seen a gastroenterologist for the stomach upset? Have you been tested for celiac disease? You may have more than one thing going on, which is not uncommon in people with autoimmune diseases. I have MG and celiac disease. A neuro appt. usually starts with general questions like what are your symptoms, how did they begin. I would mainly stick to the weakness issue. If you bring up the nausea, etc., and make it a central issue, it may confuse things. Obviously you need to mention it but, like I said, it is not a symptom in MG. Then they usually do a clinical exam, which will include things like pushing against their hands/arms with your legs/feet and arms/shoulders/hands and your neck. They'll check reflexes and sensations, with that tickly little metal tool they have! They may have you walk heel to toe or walk back and forth to look at your gait and look for signs of weakness. I had a doctor only once have me sip water (good doctor). When someone with MG does anything repetitively, like drink, their muscles get weaker. And then there is the "upward gaze" test. You keep your head still and look upward with your eyes only. Try that at home. Look in the mirror first at your eyelids and the opening of your eye. Then do the upward gaze for about 30 seconds - if you can last that long. Then look in the mirror again. Notice anything different? MG is all about fatigable weakness. Maybe you could do that and have someone take before and after photos at the same angle (from the front). You might be amazed at the difference. Then the neuro will probably order the Acetylcholine Receptor Antibody Panel (binding, modulating and blocking antibodies). Hopefully they will also order the MuSK antibodies. They may ask if you've had a chest CT and may or may not order one. I would put off being radiated until you have a positive antibody test and/or and EMG. They will often do a repetitive nerve stimulation test (RNS) and a regular EMG. The best doc/MG experts will make sure you have what's called a Single Fiber EMG. Have you had any EMG's? So that's about it. I hope the appt. goes well. Is it in the morning? Getting less sleep will wear out someone with MG. Walking up and down stairs will too. Being hot makes MG worse. Just don't try to get so worse that you can't walk! Good luck with the appt. Annie |
Hello Jaimee
Welcome to NT ! Lots of wonderful caring people here :grouphug:
I truly understand your frustration with everything you've said! I'm sorry that I'm not very familiar with your particular condidtion.......but would recommend taking with you to your appt any previous testing you've had done. You'll get better feedback from folks who know more about your condition. I just wanted to stop by and give you a :hug: because I know all too well how frustrating it is trying to get people to really LISTEN to what you are saying! My prayer is that your current Neuro will take a good long look at your history of this illness and the tests you've already had. He needs to HEAR your frustration and what this is doing to your life......rather than just speculating from test results. REAL doctors LISTEN to their patients!! Truly Caring Rae :Heart: |
Hi Jaimee,
Welcome! Many of us can relate to the anxiety your feeling regarding your upcoming appt. Consider having your significant other or a close friend or relative accompany you to your appointment. It's good to have another set of ears to hear things that you may miss, and to help relay important information that you might forget. And it's great to have a "note-taker." I wish you the best with your appointment! |
Thanks guys!
Well I'm not sure about the nausea. It doesn't happen often. Perhaps it is low stomach acid or something. That is definitely not my main concern. After I had my fourth child I was diagnosed with Bell's Palsy. My eyelid and mouth droop were not noticable to anyone else, but it was so bothersome to me. It felt like I had tiny weights attached to the corner of my eye and mouth. They were very heavy and felt better in the morning and got worse as the day wore on. It lasted for about 2 weeks and then pretty much went away. It was about a year later when I was working on sign language with my 2 yr old that I noticed I couldn't tighten my left fist as tightly as my right. I thought it was weird, but didn't really worry about it. A week later is when the bizarre waking up without the use of my left side happened. It was so strange. I could walk, but I dragged my left leg and had a hard time doing anything with my arm. It spread to include my right side by the next day and then a few days later, both arms were driving me nuts. I felt like someone had laid a lead blanket across both forearms. I couldn't wash or dry my hair or shave my legs... It was horrible. And I hesitate to use the word "pain" but it can be almost painful. I describe it like when you are lifting weights and you get to that last repetition and you want to just hold it there and get your maximum workout for that last moment... that feeling... sort of almost a burning, overuse of your muscles feeling. Anyway, at the time (this was 3 yrs ago) the Dr had no clue what was going on, I called him frantic over the weekend when my arms started like that (I had already had a head and neck CT) and he said I don't think this will help but I'll call you in some prednisone and we'll see what happens. Oh, it was marvelous! I felt so much better that same day after starting the prednisone. It didn't make it all go away, but the "pain" was gone almost instantly and most of my other symptoms improved rapidly as well. Over the course of 6 weeks it gradually subsided and though I felt weaker overall than I had beforehand, I felt much better for a time after that. I've had probably 3 more severe episodes like that since that time. Periods of weeks at a time like that. But I have milder versions of those same symptoms almost constantly. Sometimes I will go a few months and feel pretty normal! I love those times. Those are times I can exercise lightly, get all my housework done, pick up my 3yr old in my arms... Normal stuff! But then there's the rest of my life. Not so great. Seems like every time I get a cold or the flu or even allergies... it just sets off whatever this is and it takes so so long to get back to normal. And sometimes it just seems like I get to a "new normal" where I know I am stronger, but definitely not as strong as I was and it just stays at that level for awhile. I have had episodes of brief choking. I get slurred speech as well when I am having an "episode." My neck frequently bothers me. I can't even really explain that... I used to think it was a fullness feeling in my neck, but it feels better if I bend my head down forward, so I think it may just be that it is week and arching backward? Seems like I go through times where I cough alot in the evening and my voice will be hoarse. This may sound stupid and maybe it has nothing to do with anything, but I sing, and when I'm not feeling well my singing voice is weird... nasal... and I feel like I can't hold my vibrato or make my voice full from my gut like I normally can... I also have vision issues off an on. Mainly difficulty focusing. I just don't read much when I'm not feeling well. I have had trouble driving as well at times because I will think I see a car backing up in a parking lot, but it's actually not... I think that's one reason I thought there was something related to my equilibrium going on when this first started. I'm just not sure anymore. I think I will try that eye test at home. I am curious. My Neuro already has a detailed record of everything that has happened because she is the same one I went to 2yrs ago when I pursued a diagnosis of SOMETHING the last time! So hopefully that will be helpful. She diagnosed me with hemiplegic migraine (w/o head pain) then and put me on Topomax (an antiseizure med) and it made me so much worse that I stopped it after a month and never went back. My appt. this time is in the late afternoon. Oh and she has done a head and neck CT but not one specifically for my chest... Will they do that do you think? or can you see the thymus on a neck CT? I think everybody was confused that last time around because it does seem like my symptoms are all willy nilly with the perceived vertigo and balance issues... I'm just starting to wonder if maybe I misinterpret those things and maybe those symptoms that seem to not match might be rooted in something else... |
So does anybody know if the antibodies will show up regardless of how good/bad I'm feeling at present? I was just curious if it is only accurate when I am at my worst or if it remains pretty much constant in your system either way?
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MG Symptoms
Hello!
With the exception of the nausea and possibly the pain, it sounds like you have MG. All of these you described are things I have had and are definite symptoms of MG: eyelid and mouth droop with heavy feeling, hand and arm and leg and neck weakness, choking, slurred and nasal speach, vision problems. As far as I know these are classic symptoms. Pain and balance problems are not directly associated with MG, but can be caused by weak muscles. Often I strain my muscles because they are weak and then later they hurt, but this pain is not directly caused by MG. Make a list of your symptoms to bring to the doctor. There are lots of supportive people here. Let us know how you are doing. :hug: |
Well. I went to my appt today. Pretty much waited for 2 hrs just to go in and be told what tests she's ordering. She's checking potassium, magnesium, calcium, thyroid, acetylcholine antibodies and head/neck MRI. I have to go back in the morning to have the bloodwork done because the blood lady had already gone home by the time I got out.
She said she didn't think it would be MG because I don't wake up feeling "normal" in the morning and then just get worse toward the end of the day? I don't know. My mom (a nurse) said it doesn't always present that way and that it can be normal to have periods of worse/better that can last for weeks at a time like I do. Who knows? The Dr even said something about the possibility of a "lump diagnosis" Fibromyalgia for when they don't know exactly what's going on... I don't know about anyone else, but I don't want a "lump diagnosis." Especially for a pain disorder when I rarely have any pain! Argh. I'm a mite bit frustrated right now. |
Welcome!
Hi Jamee,
I've met many MGers who have morning weakness. This is why they have time-release mestinon- so that the person can wake up feeling strong. I have very bad morning weakness which mainly affects my tongue. My other areas of weakness do get worse as the day goes on, but my tongue seems to be my antibodies' main target of attack, and they like to do it all hours of the day and night lol... I take one time-release tablet at night of 180mgs, and 60mgs every 2.5-3 hrs throughout the day. I hope that you get answers to your problems as quickly as possible. Your doctor giving you a 'lump' diagnosis when she can't figure out what's really wrong with you seems irresponsible, to say the least. Sorry to say that, but I think that if the answer isn't under one rock, you keep turning all of them until you find it, rather than coming up with an invention like, 'Idon'tknowwhat'supwithyousoImadethiswordup' syndrome. It's obvious that this doctor feels that Fibro. isn't a real diagnosis, either, which is kinda interesting.:rolleyes: Good luck! Nicky |
Jaimee - - I hear you on the 'lump diagnosis'. My GP first sent me to a rheumatologist who said (when the blood work came back) - nothing specific shows up ... but you either have CFS (chronic fatigue syndrome) or fibromyalgia. I can give you a script for Lyrica!!
I declined the script - declined to see the rheumy again - - and put my search for a dx off for about another year or so!! Then things got worse enough for me to open Pandora's box once again!! Better results with neuro - - though the first one did a bunch of tests (none for MG) and referred me to another neuro!! I did go to another neuro - but not the one he was pushing!! Luckily, I got my dx really quickly with the second neuro....and have been on Mestinon ever since! Sometimes it takes awhile, but there are good docs out there who will sift through all the info and test results. Just always trust your instincts about whether or not you are comfortable with the direction things are going - -and keep searching if necessary. Good luck! Sue |
Well, I guess Monday is "Wacky Doctor" day.
I'm glad your doc ran a chem panel plus the Acetylcholine antibodies. Why is the doctor ordering an MRI right away? Why not wait? If the Acetylcholine antibodies come back positive, you're going to need a chest CT to look at your thymus. More radiation. Is the new doctoring all about doing the most expensive tests first? Why not an EMG first? A Single Fiber EMG? And why not the MuSK antibodies? It sounds like your neuro read that tiny little page on MG in the medical school textbooks that says we are fine in the morning and get worse throughout the day. Well, if I run errands in the morning without enough sleep, I'm toast by noon. Then I'll nap, regain strength - maybe - and then do nothing for two days. MG is unpredictable and you can't say things that generalize about it like "MGers feel strong in the morning." Not if they're not on drugs, they're don't. And there are other things that come into play like if you are a restless sleeper and use muscles at night. Or if you don't get enough sleep at night. MG is all about getting worse upon exertion or repetitive activity. What if you start out bad? Then you'll get even worse. And if you aren't on any drugs for MG, you'll be having symptoms all the time, 24/7. I really don't understand neurologists. Here you are, having had symptoms for a long time now, and she just wants to lump you into a category (fibro) which she obviously thinks is a dumping ground diagnosis. Like Sue said, you can say "no" to anything in medicine. Tests or drugs. Or doctors. I think your neuro is out of her league. But what do I know, I haven't met her. Maybe she's brilliant. Give her some time. Some doctors just don't "get" MG and have to be helped along. Maybe you don't have MG but it would be nice if you'd at least get the standard tests done for it to figure that out!! :eek: I dunno, Jaimee, I've been through too much with neurologists to be very supportive of them in general. There are gems out there but we often don't have the energy to go mining for them. I hope you get answers soon. Annie |
I really appreciate you guys:)
I think the reason she's doing the head/neck MRI (yet again-3rd time now) is that it's been 2 years since I've had them done? She said something about she feels like we're still at a stage where we need to rule out the "major" things. I guess the only thing that bothers me about that is that I feel like if we rule out the major things (MS-again) then I'm supposed to be thankful I'm going to live and not care if I can actually treat what I have! I don't think she ordered the musk antibodies or the chest MRI because she really doesn't think I have MG... You know the whole thing about not feeling normal in the morning... NO idea. Perhaps I don't have that, and that's fine. But I'm not doing this searching and going to doctors again just for kicks and giggles. I'm ready to get treated so I can at least feel like I'm doing all I can do to improve my health and be there for my family and live a full life. My family doc already said that if I go through her and I feel like she's not taking me seriously or like she's brushing me off, he'll refer me to someone else. He said when it's gotten to the point where I have times I can't drive or pick up my 3 year old, then we need to find out what's going on. So we'll see. I go in this morning to give them blood and an MRI later this week... |
Got my labs back and all is "normal." Guess I should be feeling better then huh? I go for the head/neck MRI Monday. I don't really think they'll find anything either. I've already done it twice before. Don't really know where to go from here. I just know I can't accept a diagnosis of fibromyalgia, a pain disorder that they can't treat since I don't have pain. Stupid doctors. My husband wants me to go back to my primary and ask to be referred to someone else. I just want to be done. :(
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Jaimee, Okay, here's a good thing to do. Sit down. Write down ALL of the symptoms you've had for the past however many years. Anything. Are you missing symptoms? Have you pooh-poohed them?
There are so many possibilities out there for what could be wrong. Celiac disease, for example, is often missed and can cause a boatload of problems. The most important thing is having a doctor who will have the "we'll figure this out together no matter what" attitude. And it doesn't sound like they have done all the MG tests, so they can't really rule it out yet. Did you get copies of your test results? If not, do it. I hope you get answers but don't expect them soon. Try to relax about the whole thing because stress is your enemy! Annie |
I hope you get a diagnosis soon.
I wanted to let you know that I had morning weakness due to MG until recently, now that my symptoms are under control (but not gone). I think that when MG is bad you never really get rested enough to feel strong, even in the morning. Since your symptoms sound like MG and the doctors haven't figured anything else out, will they will trial you on Mestinon? |
I have not gotten my test results, a copy I mean. I was too shocked on the phone to even ask for the values. I just know they're "normal." I'm not sure if I should wait this out and after I get my MRI, go back to the neuro appt I have a month from now... I sort of feel like she's just going to slap fibro on me and tell me to learn to live with it. She's the same neuro who "diagnosed" me with Hemiplegic Migraine without head pain the last go round, and prescribed Topomax telling me "let's just try it and see what happens..." Well, it didn't fix my problems and gave me actual migraines with head pain! Grrr.
I don't think SHE will do further tests for MG. Honestly I get the feeling she doesn't have much experience at all with it. But then my family doc said to come back to him if I wasn't satisfied with what she does for me... I just don't know whether I should wait til I see her again? And make sure she really is a jerk and it's not just my overactive imagination (you know, the same one that's given me all these lovely symptoms). My husband has a nurse practitioner friend who has shown an interest and wants a list of my history/symptoms. He said maybe he can help us navigate the waters. I hope so. :confused: |
Oh meant to say, I don't know if my family doc would trial me on mestinon or not... It's strange, because for a family physician, he seemed awfully sure that that's what I had... That's why he referred me to the neuro. He even gave us the webmd page to look at. I thought that was odd. I don't know if maybe it's just protocol to refer that kind of stuff or what... He said he remembered seeing a test done for it back in med school but that it was more up the neuro's alley... I mean, I'm not convinced it's MG, only because of the vomiting that I have had sometimes. And I'm not one to just have an overactive gag reflex or anything. It hits and it hits hard. But like someone said, perhaps I'm dealing with more than one thing. That would be fantastic :rolleyes:
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Jaimee, I'm being trying to "mesh" the vomiting with MG. This is all I could possibly figure out: When I get double vision in all directions EXCEPT forward (this is hard to explain unless you have had it) -- I see double peripherally to the right, upwards, to the left, and downwards. It makes me POWERFULLY dizzy. Like I have to hold on to something or I will fall down. Anyway, my mom and sister suffer from inner ear -- and when they get THAT kind of dizziness, they have AWFUL vomiting episodes -- almost like projectile vomiting -- it seems to go on and on. They take Mecl--something, well the other name is antivert, for this. I wonder IF you have double vision that makes YOU so very dizzy that it upsets YOUR stomach? The docs say that this is what happens with inner ear.
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Yeah I can see where that would make sense. And it could possibly make sense of when I've had daytime vomiting. It does generally begin with a queasiness that I just can't shake or put my finger on. So maybe some of that is vision related. HOWEVER. lol there's always a "but" isn't there? It seems like if I closed my eyes, like when I go to bed, that the queasiness would go away... And at least a couple times now I have vomited repeatedly through the night. I just don't know...
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test results
I called to get the values for my labs and here they are. No clue what any of them mean, but figured there's no harm in posting them!
ACHR binding: <0.03 chloride: 102 carbon dioxide: 25 TSH: 2.330 calcium: 9.1 magnesium: 2.0 potassium: 3.9 glucose: 76 BUN: 12 creatine: .66 ratio: 18 sodium: 138 :confused: All I know is that these are "normal!" |
Well, she didn't know enough to run the entire Acetylcholine Antibody panel. You should've had binding, modulating and blocking antibodies done. And did she send it off to Mayo or somewhere equally adept at the test? Quest Diagnostics is often "wrong" when running it.
http://www.aruplab.com/guides/ug/tests/2001571.jsp 3% - 4% of MG patients only have the modulating antibody, which she would know if she were an expert. I am one of those few. I should add that different labs have different determinations of what is positive. This lab, for example, has an "indeterminate" reference range for the modulating antibodies while the Mayo lab does not. There are other drugs that can affect those tests, like Advair or Flovent. Any steroids will. And IgG deficiency will affect them as well (they would be lower or negative if you had a deficiency and did have MG AChR antibodies). With a disease like this, it's always best to be diagnosed by an expert, or have it ruled out by an expert. You can always have a "regular" and nice neuro follow you after that. Anie |
I don't think she sent it anywhere. They took my blood Tuesday morning and I got the results Thursday... How does one go about finding an expert? I mean, I definitely want to go to somebody who's going to figure this darn thing out. But all I know to do is go to who my family doc refers me to. Do you think my family doc could run those tests? I don't want him to think I'm a hypochondriac for finding out about this stuff... I need someone on my side.
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All we need to know is where you live or what major city you are nearby. Or if you don't want to, contact the MDA: www.mdausa.org
It's good to be cautious with any doctor when getting a 2nd opinion. They often get insulted by that, even though they publicly swear it's a good thing. |
I live in Spartanburg SC. If anyone wants to hunt me down, I don't run very fast... :rolleyes:
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[QUOTE=Jaimee;642525]Hi all! My name's Jaimee. I'm in the process of being checked for Myasthenia Gravis after 3 yrs of misdiagnoses, theories and assumptions. I go to the Neuro Monday and really have no idea what to expect, but I'm hopeful for answers. I'm a mom of 4 little ones and this has been a struggle. I think more than the weakness, trouble and sometimes even pain, I struggle most with people not seeming to believe that I'm having trouble! I guess because they can't always see my weakness or difficulty or because they haven't seen me at my worst... I am wrestling with my attitude right now because I would love to just rub it in everyone's faces when I finally do get a diagnosis. But more than anything, I want to feel better and stronger and more able to care for my family and follow through with the things that I'm passionate about.
Anyway, I'm wondering-- What can I expect from my first appt. with the Neuro? It's been 2 years since I've been to a Dr. and the last round eliminated MS, Meniere's disease, fibromyalgia, lyme disease, and chronic fatigue syndrome... but brought up the question of Hemiplegic Migraine (w/o head pain)-- I know! Crazy! gidday jaimee I have been diagnosed for 3 years now, I was diagnosed by an optician after been accused of being a time and health resource waster by a specialist ??? anyway when I finally got to a nuero, anti bodie test first, positive for me but not always for everyone, next test was the electric machine ??? measures muscle response , stick fine needles into muscles and watch machine?? next electro shock of muscles and measure respone or something like that ( not pleasant ) was on mestinon and prednisone for a few years but now have progressed to immuglobin and plasma exchange, rest is essential regards johnc666 |
Went to the GYN today and she suggested I go to a rheumatologist. Mentioned something called polymyalgic rheumatica? No clue. Got a brain MRI today. When I got to my appt. found out my insurance had denied the neck MRI... So is there a good Dr in the Spartanburg SC area I should pursue?
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Jaimee, Is there a reason your doc is thinking polymyalgia rheumatica?
Do you have the MRI results already? Here is what I got from the MDA website. http://local.mda.org/site/PageServer...&Lookup=Lookup I don't live in your area, so I don't know of any good neuros. You may have to head up to Greenville to get an MG expert. Hope that helps. Annie JohnC - Can you please start a new post because I think your response is getting lost in this thread. |
I have the disk but not the result/reading. Of course when I look at the pics of my brain, it just looks like a brain... I don't really expect them to find anything there. This is the third go round.
I'm not really sure why she brought up polymyalgic rheumatica... It was just a new gynecologist, so she wasn't trying to diagnose or anything. But her point I think was that perhaps we've been barking up the wrong tree. Maybe a neurologist is not what I need after all. She was just explaining that she had had a patient who ended up having that after it was triggered by hysterectomy and that some things jumped out at her as similar... I don't know. Sorry John, didn't mean to ignore you there! I'm not sure if anybody will do any of those tests on me or not... It seems that the neuro anyway feels that she has discredited MG as an option. |
Are you sure you don't have the results. They are often required to attach them, like tuck them into the sleeve of the results. Or on the disk in a separate file.
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No, they burned the disk right away and the lady told me they would be read and reported on by tomorrow (today) and given to my Neuro. So all I have is the disk. I think it's hilarious I may have to go back in for a neck MRI since the silly insurance co. wouldn't approve it the first time around without a peer to peer interview with the dr. She's been out of town til today... Not sure if I should expect to hear today about the results or if she won't say anything til I follow up with her in May.
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Just for fun, here's the findings from my last head/neck MRI in 2008.
Findings- There is no acute infarction, acute intracranial hemorrhage, hydrocephalus, intra-axial mass, mass-effect or abnormal extra-axial fluid collection. The cerebellar tonsils are in a normal position. There are no white matter lesions suggestive of demyelinating disease. There is no abnormal parenchymal or leptomeningeal enhancement. The mastoid air cells and paranasal sinuses are clear where imaged. A few mildly prominent high internal jugular chain lymph nodes are present in the neck. Physical exam correlation would be beneficial for further evaluation of this area. Impression- No acute intracranial abnormality or MR findings of demyelinating disease See? Pretty dull. Any idea what the lymph node thing is? Nobody ever mentioned it to me. I just noticed that in the report. Allergy? |
Jaime - no to muscle relaxers! They will make your vision so much worse! I had been given them for my fybromyalgia and all of a sudden my double vision was terrible. Had to wear my patch! My vision was blurred I was afraid to drive even short distances. Something else that will do the same thing is Lyrica. It doesn't do it to all who take it, but it did me. good luck.:(
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Yeah, regardless of what I have, I'm thinking no more muscle relaxers for me! :) So Kathie, you have been diagnosed w/both MG and fibro? You poor dear. That does not sound like much fun.
I called my Neuro's office a while ago to inquire about my MRI that I had on Monday. The receptionist asked for my info, name, date of birth etc... click, click, click... And then told me she'd have to have someone call me. SIGH. You'd think she could just tell me normal or abnormal? I really was expecting "normal" results. Hopefully they were just busy and didn't want to take the time. At the same time, I'd almost welcome an answer to explain what's up with me.:rolleyes: |
Ask for a copy of the resport
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I now get copies of all test results. When I got the copy of my chest CT scan I was surprised that the radiologist mentioned something about something on my right adrenal gland (guess it just barely showed up on the scan). Neither my neurologist nor primary care doctor mentioned anything about it. When I questioned them both about it, they told me "not to worry.":confused: I don't know why doctor's offices don't do this as standard operating procedures. My husband gets bloodwork every 6 months, and we have to ask for a copy each time. I like to compare with previous results. When the office calls with the results, they just say "the doctor looked at it and everything is OK." This doesn't give you any indication if any numbers have gone up or down or are close to borderline. You have to learn to be your own advocate. |
I am starting to feel that way now as well Kathy. Especially now that this episode is passing and I am feeling stronger. I am ready to be a force that is to be reckoned with... They called back and said my brain mri was normal. I go back for a follow up on May 10, so I'll get a copy to take with me then.
I scheduled an appt with my primary doc for 2 days after my neuro follow up. Should I ask to be referred to a different neuro do you guys think? Or just a rheumatologist? Or a mental institution? :D |
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