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update on ms like symptoms and clear mris
I posted on the neuro side, but i wanted to update this forum since i was originally exploring ms like symptoms. i would love anyone's feedback. they were looking at ms and then cidp...
hey quix-
so i went to the doctor. it was really weird though! my muscles and my reflexes were behaving much differently then they had for my last two neurologist visits (with a different neuro who had sent me to this new guy). my reflexes seemed pretty normal except my right arm they were absent. the last time none of my reflexes were there except in my feet. then when he tested my muscles my strength seemed pretty close to normal. my appointment was at 9 am and all of my issues definitely get much worse by the end of the day. my other neuro appts have been in the afternoon or i would have to walk a while to them. usually i can barely withhold any resistance on the right side. which is frustrating because lo and behold that afternoon the issues defintitley grew. the neuropathy was still there though.
he did the ncr and emg and they both came back fine. which is good. but i would like some awnsers. he is putting me on some medicine that he said would make me tired but help with nerve pain (i'm already so tired though). he took more bloodwork and i know he is checking my b12 and might get me some shots, but the lab tech was saying why is he testing all these wierd things and had to look up the test in a book so i'm not sure what else he is looking for. he also took xrays of my lungs. and when i asked him why, he said he didn't want to scare me???? and i gave him a seriously? look... and he said the name, but it was so long i couldn't remember it.... any ideas? i feel like it started with an s or a p.... vague i know...
he seemed to think that everything is so slow moving that it couldn't be cidp (also my lack of nerve damage seems so too). he seemed intrigued but not overly concerned. i am very frustrated again. i don't want anything bad, but i'm so over this. i'm 23 (yesterday was my bday :) and i just know my muscles and my body. i quite honestly can't afford my insurance or the doctors, so it isn't like i want the attention. i just want something to treat and to move on.
my next appointment with him isn't till october as a follow up, but he is going to call me about my results.
i would love any feedback.
oh and you asked about heat. it doesn't bother me horribly. my muscles feel heavier and i feel more tired but i can still function.
i hope your new reevaluation of your vertigo is going better and onetri i hope you are getting some answers.
hey quix-
so i went to the doctor. it was really weird though! my muscles and my reflexes were behaving much differently then they had for my last two neurologist visits (with a different neuro who had sent me to this new guy). my reflexes seemed pretty normal except my right arm they were absent. the last time none of my reflexes were there except in my feet. then when he tested my muscles my strength seemed pretty close to normal. my appointment was at 9 am and all of my issues definitely get much worse by the end of the day. my other neuro appts have been in the afternoon or i would have to walk a while to them. usually i can barely withhold any resistance on the right side. which is frustrating because lo and behold that afternoon the issues defintitley grew. the neuropathy was still there though.
he did the ncr and emg and they both came back fine. which is good. but i would like some awnsers. he is putting me on some medicine that he said would make me tired but help with nerve pain (i'm already so tired though). he took more bloodwork and i know he is checking my b12 and might get me some shots, but the lab tech was saying why is he testing all these wierd things and had to look up the test in a book so i'm not sure what else he is looking for. he also took xrays of my lungs. and when i asked him why, he said he didn't want to scare me???? and i gave him a seriously? look... and he said the name, but it was so long i couldn't remember it.... any ideas? i feel like it started with an s or a p.... vague i know...
he seemed to think that everything is so slow moving that it couldn't be cidp (also my lack of nerve damage seems so too). he seemed intrigued but not overly concerned. i am very frustrated again. i don't want anything bad, but i'm so over this. i'm 23 (yesterday was my bday :) and i just know my muscles and my body. i quite honestly can't afford my insurance or the doctors, so it isn't like i want the attention. i just want something to treat and to move on.
my next appointment with him isn't till october as a follow up, but he is going to call me about my results.
i would love any feedback.
oh and you asked about heat. it doesn't bother me horribly. my muscles feel heavier and i feel more tired but i can still function.
i hope your new reevaluation of your vertigo is going better and onetri i hope you are getting some answers.
Sorry not to get back to you, chris. Sarcoidosis is usually screened for with a chest X-ray. And it's generally treatable and/or self-limited. As far as Lyme testing you should have a "Western blot" and the laboratory indentification is usually at the top of bottom of the page. If the result says "ELISA" then you did not have a reliable test. Go to the Igenex website. I think Tory said you can have them ship you a kit. Then your doc needs to order it, so the lab can drw it according to the instructions in the kit and then you mail it back. She said all shipping is "on them."
I hope the Lyrica works wonders. Remember that initial symptoms, like tiredness or grumpiness, usually pass after a couple weeks.
Hope to hear from you soon.
Quix
I hope the Lyrica works wonders. Remember that initial symptoms, like tiredness or grumpiness, usually pass after a couple weeks.
Hope to hear from you soon.
Quix
thanks so much for the support.
it is definitely frustrating. relapsing remitting it definitely is. for a long time it always made me wonder if it would go away. and lo and behold now i know it won't. it just takes a breather for a few weeks or so. i didn't really realize the direct correlation about the time of day till after the appointment although i told him how astonished i was at the strength. he could tell i was upset though so i hope he doesn't think i'm a crazy woman. i don't want anything bad, but i just know that at age 23 and my body that whatever has been going on is not normal. i'm fine with not being perfect as long as i know i'm not going to make getting better tougher or irreversible.
well hopefully i will find out about my b12 again and the crazy blood work and xrays soon but otherwise i will just wait it out till i see him again in October. it seems like a long time away, but it is in the evening and quite frankly, i need a break from doctor visits. he is putting me on lyrica as well. i have been delaying starting until birthday festivities are done and i can have a day of being tired since i react so strongly to medicine like that.
sarcoidosis is what i think he was looking for. hope its not, but i don't think it is. i was tested for lymes disease, but from what i have read on here it seems like the tests they normally run aren't as reliable. should i look in my reports for that? will it say igenex clearly?
i hope your vertigo is getting some relief. i hope you realize how much of a relief you are to so many out here.
thanks again quix.... hypo gamma chondria house it is :)
it is definitely frustrating. relapsing remitting it definitely is. for a long time it always made me wonder if it would go away. and lo and behold now i know it won't. it just takes a breather for a few weeks or so. i didn't really realize the direct correlation about the time of day till after the appointment although i told him how astonished i was at the strength. he could tell i was upset though so i hope he doesn't think i'm a crazy woman. i don't want anything bad, but i just know that at age 23 and my body that whatever has been going on is not normal. i'm fine with not being perfect as long as i know i'm not going to make getting better tougher or irreversible.
well hopefully i will find out about my b12 again and the crazy blood work and xrays soon but otherwise i will just wait it out till i see him again in October. it seems like a long time away, but it is in the evening and quite frankly, i need a break from doctor visits. he is putting me on lyrica as well. i have been delaying starting until birthday festivities are done and i can have a day of being tired since i react so strongly to medicine like that.
sarcoidosis is what i think he was looking for. hope its not, but i don't think it is. i was tested for lymes disease, but from what i have read on here it seems like the tests they normally run aren't as reliable. should i look in my reports for that? will it say igenex clearly?
i hope your vertigo is getting some relief. i hope you realize how much of a relief you are to so many out here.
thanks again quix.... hypo gamma chondria house it is :)
Hey, Kiddo, I wanted to say a Belated Happy Birthday, even though things aren't going so well. You still deserve the little good things. I can't believe your body chose that moment to improve!!!! How annoying! I'm going to tell you something that I have discovered myself. Even though it seems like cheating, I actually try to be at my worst when I go in for a new complaint. My vertigo Dr. (whose place in Heaven was securred LONG ago) told me after a few years that, in staff meetings, everyone had commented how I tried to hide how bad I was feeling. That they had to factor that in to what I told them. So, I never recommend exaggerating or embellishing, though I do recommend being firm about describing how bad you feel.
If you know you are worse in the afternoon, schedule appointments then. Weakness, problems with gait, whatever will be more pronounced. It's not inappropriate to get a little too warm before your appoinment so that all active problems are more pronouced and you look as wiped out as you feel. Maybe exercise a tiny bit to bring on the symptoms you want them to see.
The normal NCV and EMG rather rule out CIDP, or at least make it much less likely. I still recomend that you follow up with your current neuro if things act up more. Are you still feeling better and stronger? Document this in your illness journal. Periodically write an update letter and sent it to both neuro's. They will put them in your chart, it won't cost anything and if they read something they are concerned about they will call you in.
Could the chest X-ray have been for Sarcoidosis or NeuroSarcoidosis? It's a good screening test for an usual, but possible cause of neurologic problems.
Well, you have just demonstrated the concept of "Relapsing-Remitting." Make sure you get tested for Lyme disease through Igenex. Pledge for the Hypo Gamma Chondria House and stick around. We WILL come to an answer. It may take a couple cycles.
Hang in there, Quix
If you know you are worse in the afternoon, schedule appointments then. Weakness, problems with gait, whatever will be more pronounced. It's not inappropriate to get a little too warm before your appoinment so that all active problems are more pronouced and you look as wiped out as you feel. Maybe exercise a tiny bit to bring on the symptoms you want them to see.
The normal NCV and EMG rather rule out CIDP, or at least make it much less likely. I still recomend that you follow up with your current neuro if things act up more. Are you still feeling better and stronger? Document this in your illness journal. Periodically write an update letter and sent it to both neuro's. They will put them in your chart, it won't cost anything and if they read something they are concerned about they will call you in.
Could the chest X-ray have been for Sarcoidosis or NeuroSarcoidosis? It's a good screening test for an usual, but possible cause of neurologic problems.
Well, you have just demonstrated the concept of "Relapsing-Remitting." Make sure you get tested for Lyme disease through Igenex. Pledge for the Hypo Gamma Chondria House and stick around. We WILL come to an answer. It may take a couple cycles.
Hang in there, Quix
I've been wanting to respond to your post, but things are getting in the way. I'm leaving soon for a Dr. appointment. Today is not appearing to me one of my best. I'll try tonight. I'm sorry things seem to have progressed so little. Q
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