Aa
Another Lyrica question
Can you tell me what are the Lyrica 'spookies' that several of you are talking about. I am on this at only 50 mg but I am very wary of weight gain on it. What other things are you speaking of?
Thank you
Jazzy fizzle
I feel for you and totally empathisize with what you are going through. I am not on the Lyrica so I cannot add to that but I have felt at times like I don't know where I fit in and kind of isolated from this great support group. I think what has happened is we have gotten so big so fast and there are so many newbies here that you can post and it will be at the bottom of the page before anyone even gets to see it.
I hope you get some final answers soon so that you can make your plan of treatment for the future. It is so very hard not knowing what exactly is going on in your body!! I am glad you have seen how many of us appreciate your presence here and we would not be the same without you!!
Take care and I will be praying for you!
Kristin
I hope you get some final answers soon so that you can make your plan of treatment for the future. It is so very hard not knowing what exactly is going on in your body!! I am glad you have seen how many of us appreciate your presence here and we would not be the same without you!!
Take care and I will be praying for you!
Kristin
Wait until you try to tell someone about the neuro exam and the sensation test using the pin *****. I wrote the word as you would use it and it the program will edit it. It's hilarious!. Q
LOL I see that I was edited by the computer or whatnot. Actually my word was c r a p that was blotted out. Too funny!
Jazzy
Jazzy
You guys, thank you for the posts. It really means the world to me. I think I feel like I'm in a spiral right now, I literally do not know how to feel. It is so ying and yang. I dont' feel depression. Maybe it was a quick fall off the bandwagon. One part of me wants my doctor to come to the conclusion that he agrees with the other doctor, and also tell me I have MS. Only because like I have read before on here - it gives a name to my enemy. I can fight a enemy I can learn about better that one that is a big unknown. Then I have a definite answer handed to me.
One part of me wants him to say its the strokes, but course thats not good at all either. And why the heck would these still be happening. Or if they are not - then I am stuck with this body like this forever. None of it is good.
I do feel deeply that all of you can understand what I am going through.
Oh UK, I am so, so sorry this dreadful **** is affecting those parts of your life also and you never get relief, but for only brief moments. This is suffering on so many levels. :(
You guys are so right. I know I am among my own kind here. You are the best. I think I was just in a warp and do not know how to feel about this coming week. :( Please forgive my whine.
Hi Quix, thank you for your ideas. A little kitty snuggle would be just awesome. :) Yes I have been on the anti virals for 11 months now. They have helped things tremendously. The titers have come down between 200-300 points at the last check, which was back in the late winter. Lymph nodes all along the left collar bone, armpit and chest area were swollen and dreadfully painful before I started the anti virals. Now they are much, much improved and hurt none at all, or at times, only a little.
I am no longer sleeping all day and night like I was, so that is much better.
All the symptoms that began after the coma have stayed and I haven't developed anything new that I can think of right off. Muscle spasms, muscle pain and great weakness, no strength in any of the body (walking up stairs is a nightmare), buzzing, tingling, 'wet' feeling legs, arms going numb, extended length headaches, falling down or things falling out of my hands for no reason ( a real embarassing one was a cup of coffee right at the front door of a building in town, good grief ). You are right Quix, he believes either strokes or the MS. I have not had the LP. Last week I had a new MRi with contrast and the VEp for the first time. The Neuro has never came out and stated that he feels there might be a connection between the Ebv and the MS. I will think about asking him on Wednesday.
I am taking the DH (well right now that is the plan) with me for the first time. He has never been to one of my visits. I might change my mind before then.
Carol I am so glad to read that the Lyrica hasn't caused any problems for you. I did get that spaced out feeling badly at first, during the next morning after taking it (at bedtime). And I am only on 50 mg.
I am worried about gaining weight on it. I am not large but have gained to the absolute limit, from meds, that I will put up with gaining. I just can't take being any bigger than this.
Hugs to you all
Jazzy
One part of me wants him to say its the strokes, but course thats not good at all either. And why the heck would these still be happening. Or if they are not - then I am stuck with this body like this forever. None of it is good.
I do feel deeply that all of you can understand what I am going through.
Oh UK, I am so, so sorry this dreadful **** is affecting those parts of your life also and you never get relief, but for only brief moments. This is suffering on so many levels. :(
You guys are so right. I know I am among my own kind here. You are the best. I think I was just in a warp and do not know how to feel about this coming week. :( Please forgive my whine.
Hi Quix, thank you for your ideas. A little kitty snuggle would be just awesome. :) Yes I have been on the anti virals for 11 months now. They have helped things tremendously. The titers have come down between 200-300 points at the last check, which was back in the late winter. Lymph nodes all along the left collar bone, armpit and chest area were swollen and dreadfully painful before I started the anti virals. Now they are much, much improved and hurt none at all, or at times, only a little.
I am no longer sleeping all day and night like I was, so that is much better.
All the symptoms that began after the coma have stayed and I haven't developed anything new that I can think of right off. Muscle spasms, muscle pain and great weakness, no strength in any of the body (walking up stairs is a nightmare), buzzing, tingling, 'wet' feeling legs, arms going numb, extended length headaches, falling down or things falling out of my hands for no reason ( a real embarassing one was a cup of coffee right at the front door of a building in town, good grief ). You are right Quix, he believes either strokes or the MS. I have not had the LP. Last week I had a new MRi with contrast and the VEp for the first time. The Neuro has never came out and stated that he feels there might be a connection between the Ebv and the MS. I will think about asking him on Wednesday.
I am taking the DH (well right now that is the plan) with me for the first time. He has never been to one of my visits. I might change my mind before then.
Carol I am so glad to read that the Lyrica hasn't caused any problems for you. I did get that spaced out feeling badly at first, during the next morning after taking it (at bedtime). And I am only on 50 mg.
I am worried about gaining weight on it. I am not large but have gained to the absolute limit, from meds, that I will put up with gaining. I just can't take being any bigger than this.
Hugs to you all
Jazzy
If your a lone werido then we are the lone weridos together!!
Glad your coming out of your flare abit. I feel the same as you sometimes that im trapped in a illness that nobody understands except on here but sometimes i dont even fit on here everyone else on here seems to have spells of illness unless like Quix who suffers alot (and i feel for her so much she is a amazing lady!!)
I seem to have constant pain i might get away with a few days of being ok only mild pain then bang!!! it happens again often something new or it will be a flare that will send me to bed in pain for days!!
It is effecting my marriage my children my frienships and though they support me they cant understand.
I see Quix has responded to you so she will be able to help you with those other questions. I have my LP and EMG in October so maybe ill get some answers soon.
We all care for each other on here Jazz and if your ever just feeling lonely just post, we all have a awfull history of some kind and we are all looking for answers, some have MS but they need the support of others with answers to carry them through or answers about medication and some like me our just lost but i know there are people on here who know how i feel and are there for me.
God Bless
Glad your coming out of your flare abit. I feel the same as you sometimes that im trapped in a illness that nobody understands except on here but sometimes i dont even fit on here everyone else on here seems to have spells of illness unless like Quix who suffers alot (and i feel for her so much she is a amazing lady!!)
I seem to have constant pain i might get away with a few days of being ok only mild pain then bang!!! it happens again often something new or it will be a flare that will send me to bed in pain for days!!
It is effecting my marriage my children my frienships and though they support me they cant understand.
I see Quix has responded to you so she will be able to help you with those other questions. I have my LP and EMG in October so maybe ill get some answers soon.
We all care for each other on here Jazz and if your ever just feeling lonely just post, we all have a awfull history of some kind and we are all looking for answers, some have MS but they need the support of others with answers to carry them through or answers about medication and some like me our just lost but i know there are people on here who know how i feel and are there for me.
God Bless
I take lyrica and have for quite some time now. It has helped me alot. Besides helping with pain it can help control seizures. I have'nt had any side effects from taking lyrica. Only Good things from me on it!
I look forward to hearing more of your life. I'm also sorry that you are having to go through all of this but hang in there.
I'll be praying,
Carol
I look forward to hearing more of your life. I'm also sorry that you are having to go through all of this but hang in there.
I'll be praying,
Carol
I got up 'cause I couldn't sleep - took the Provigil took late in the day. I'm sorry you aren't getting responses. I thought you were well into the forum. I haven't answered the Lyrica question becasue I do not have experience with it either as a patient or a doc.
Each med used for neurological and psychiatric purposes has it's own website and/or forum, it seems where people extoll their horrors with it. I think have "extreme sensitivities" to drugs makes some people feels special or important, I don't know. From what I've heard Lyrica has fewer side effects than Neurontin ( an older med used for many of the same things). Mainly I've heard really good things about it (not a very scientific answer)but, with the provision that you know it may make you feel tired or spacey initially, to start at a lower dose and work up and that the weird initial effects usually wear off. It is similar to starting an antidepressant. When the brain neurochemical balnace begins changing you can feel "off" for a while.
I'll try to pay a little more attention, now that I know you don't feel a part. I misread your interactions, I guess. It also could be an evolution of the depression and isolation of having a neuro disease. But, keep at us.
You have asked a couple times if anyone thought that your MRI spots are from on-going strokes or not. From what you told us, you were in severe enough dehydration (which accompanies severe DKA) to have had strokes. But, since that episode resolved, I can't see any reason that would continue to be the answer to your still developing problems. As I understand it you are still getting new symptoms, right? Now the neuro you're seeing has found very high EBV titers. Is he treating you with antivirals? If so, is it helping with the fatigue or with the swollen glands and are the titers dropping? What does he think of the possibility of this also being MS? Has he said anything about the link between persistently high EBV titers and a predisposition to MS? Have you read my write ups on that topic?
Have you had any of the other parts of an MS work up except the MRIs? I should remember, but with 60 or so people on the forum, I do lose track. Have you had an LP?
It is true that with all the horror you went trhough that your history is different from others, but your symptoms aren't. I hope we can get you over this feeling of differentness and I hope I didn't contribute to it.
Tell me again what the debate is in your condition. Between what and MS - ministrokes?
Would a kitty hickie from little Clyde help? She just gave me one on the neck that I would love to share. She was spayed yesterday and really needs the nuzzling time. Quix
Each med used for neurological and psychiatric purposes has it's own website and/or forum, it seems where people extoll their horrors with it. I think have "extreme sensitivities" to drugs makes some people feels special or important, I don't know. From what I've heard Lyrica has fewer side effects than Neurontin ( an older med used for many of the same things). Mainly I've heard really good things about it (not a very scientific answer)but, with the provision that you know it may make you feel tired or spacey initially, to start at a lower dose and work up and that the weird initial effects usually wear off. It is similar to starting an antidepressant. When the brain neurochemical balnace begins changing you can feel "off" for a while.
I'll try to pay a little more attention, now that I know you don't feel a part. I misread your interactions, I guess. It also could be an evolution of the depression and isolation of having a neuro disease. But, keep at us.
You have asked a couple times if anyone thought that your MRI spots are from on-going strokes or not. From what you told us, you were in severe enough dehydration (which accompanies severe DKA) to have had strokes. But, since that episode resolved, I can't see any reason that would continue to be the answer to your still developing problems. As I understand it you are still getting new symptoms, right? Now the neuro you're seeing has found very high EBV titers. Is he treating you with antivirals? If so, is it helping with the fatigue or with the swollen glands and are the titers dropping? What does he think of the possibility of this also being MS? Has he said anything about the link between persistently high EBV titers and a predisposition to MS? Have you read my write ups on that topic?
Have you had any of the other parts of an MS work up except the MRIs? I should remember, but with 60 or so people on the forum, I do lose track. Have you had an LP?
It is true that with all the horror you went trhough that your history is different from others, but your symptoms aren't. I hope we can get you over this feeling of differentness and I hope I didn't contribute to it.
Tell me again what the debate is in your condition. Between what and MS - ministrokes?
Would a kitty hickie from little Clyde help? She just gave me one on the neck that I would love to share. She was spayed yesterday and really needs the nuzzling time. Quix
Hi UK, Thank you so much for your response. I dont' seem to be meshing here or really getting responses to my posts, so I definitely appreciate it, and its a bummer because I felt at home when I joined. Sorry it took me a bit to respond.
I am doing ok this week, I have came out of the 'phase' I had a few weeks ago where I was suffering and could not think clearly at all, even to read and comprehend. This coming week I have the last of three tests and then my next appointment and it will decide if my Neuro agrees with the gov. doctor's diagnosis of MS or not. I can't seem to find much in the way of info that I can understand about the two things compared. So I have tried to just not think about it at all until I find out on Wednesday. I feel like a lone wierdo and not sure if I fit in anywhere, there seems to be no one with a diagnosis like me, no one I can talk to. Its hard to put it on the family all the time and even when they are supportive they can't understand.
I hope you are doing ok. Its great to talk to you
Jazzy
I am doing ok this week, I have came out of the 'phase' I had a few weeks ago where I was suffering and could not think clearly at all, even to read and comprehend. This coming week I have the last of three tests and then my next appointment and it will decide if my Neuro agrees with the gov. doctor's diagnosis of MS or not. I can't seem to find much in the way of info that I can understand about the two things compared. So I have tried to just not think about it at all until I find out on Wednesday. I feel like a lone wierdo and not sure if I fit in anywhere, there seems to be no one with a diagnosis like me, no one I can talk to. Its hard to put it on the family all the time and even when they are supportive they can't understand.
I hope you are doing ok. Its great to talk to you
Jazzy
Hi
Lyrica effects people in many ways and it can be a hard drug to cope with, they have a great werbsite with peoples reactions on there and what it has done for them.
You are on such a low dose i doubt it will have any side effects im on 375mg and i dont feel that many apart from motion sickness,weight gain and abit floaty!
You will know if it is the right drug for you after a while. Hope your well.
Lyrica effects people in many ways and it can be a hard drug to cope with, they have a great werbsite with peoples reactions on there and what it has done for them.
You are on such a low dose i doubt it will have any side effects im on 375mg and i dont feel that many apart from motion sickness,weight gain and abit floaty!
You will know if it is the right drug for you after a while. Hope your well.
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