Aa
SO NOW WHAT??
I went to my appt. with neuro today for follow up. Sleep apnea results were all good. The spinal MRI only showed a 2 mm buldge so this is not causing the problem. SO NOW WHAT???
I feel like I'm lost.............He saw how upset I was and told me dont worry I'm not giving up on you. I am in pain on a ldaily basis. He put me on Keppra to use as a preventive med for the migraines. Also, changed my migraine med to Axert. The migraines are not the problem..........its the pain in my neck that does not get relieved, and causes my headaches. I told him my sx seem to be getting worse. Now I have started tremors in my left hand. This is just one example on my list. I just dont know what else to do. He wants me to call him in 2 weeks to see how meds are doing. I dont have anothe appt with him until end of July. I really feel like he is doing all he can. I did not feel put off. I just cant stop crying, because I dont know what is wrong. Oh, yeah, I am going to have to wear a heart monitor for 21 days. He wanted to look closer into that. I wore one for 24 hours, but he wants to look further into it.
Thank you all for being here for me to talk to. I feel like I'm alone and just dont know what to do from this point. I am not usually this down, not feeling well is just really getting to me. I drove today for the first time in 3 months. Made me very dizzy and nauseaus. I plan to call and schedule an appt with him in about 2 weeks, if for nothing else, just to check in.
I hope you all have had a better day!
Hugs,
Beth
I feel like I'm lost.............He saw how upset I was and told me dont worry I'm not giving up on you. I am in pain on a ldaily basis. He put me on Keppra to use as a preventive med for the migraines. Also, changed my migraine med to Axert. The migraines are not the problem..........its the pain in my neck that does not get relieved, and causes my headaches. I told him my sx seem to be getting worse. Now I have started tremors in my left hand. This is just one example on my list. I just dont know what else to do. He wants me to call him in 2 weeks to see how meds are doing. I dont have anothe appt with him until end of July. I really feel like he is doing all he can. I did not feel put off. I just cant stop crying, because I dont know what is wrong. Oh, yeah, I am going to have to wear a heart monitor for 21 days. He wanted to look closer into that. I wore one for 24 hours, but he wants to look further into it.
Thank you all for being here for me to talk to. I feel like I'm alone and just dont know what to do from this point. I am not usually this down, not feeling well is just really getting to me. I drove today for the first time in 3 months. Made me very dizzy and nauseaus. I plan to call and schedule an appt with him in about 2 weeks, if for nothing else, just to check in.
I hope you all have had a better day!
Hugs,
Beth
Thanks for your input. Actually, I have been reading on lymphnoma. I realized that the swelling in my neck and the pain behind my ear may be swollen lymph nodes. I also have swelling under my arms. The sweats that drench me are also a sx of that. I will speak to my doctor about this. Thanks for your input again. Dont worry ya'll wont get rid of me that easily. I'm addicted now..................LOL
I was very upset today, but now my determentation has set in once again. I am going to keep pushing to find out waht is going on with me.
Hugs,
Beth
I was very upset today, but now my determentation has set in once again. I am going to keep pushing to find out waht is going on with me.
Hugs,
Beth
Hi, there. I read your timeline on your journal. Thank you for putting that there. It made it so much easier to get a grip on everything you've been going through.
That said, I do not have a great feel for what the problem is. It sounds like you have a type of neuralgia - pain from a damaged nerve. The fact that it leads into a migraine makes things much murkier. None of what you have described sounds like MS to me. The episode of losing your vision for less than an hour would not be consistent. MS is a disease of actual damage to the myelin and, because of this, the symptoms are much more persistent than you describe. A doctor that doesn't deal often with MS might hear "vision loss" and think MS, because there is that link in our minds.
The requirement for an MS symptom is that it last at least 24 hours. It might be continuous, but if it is not, then it needs to be recurring throughout the day for at least 24 hours.
Does your neurologist have access to any of the major university headache clinics? I know you feel that migraines are the result and not the cause of your severe pain, but, the reverse is often the case in complicated migraine.
I'm sorry I don't have anything better to add. I was not a neurologist and really don't have neurologist training. What I know about it ahs been the reading I have done in the last year+ about MS. But, you are very welcome here, we can all understand severe pain. One more thought. Sometimes Pain Management experts can tell what the problem is by the pain's behavior.
Lots of Hugs and good luck!
Quix
That said, I do not have a great feel for what the problem is. It sounds like you have a type of neuralgia - pain from a damaged nerve. The fact that it leads into a migraine makes things much murkier. None of what you have described sounds like MS to me. The episode of losing your vision for less than an hour would not be consistent. MS is a disease of actual damage to the myelin and, because of this, the symptoms are much more persistent than you describe. A doctor that doesn't deal often with MS might hear "vision loss" and think MS, because there is that link in our minds.
The requirement for an MS symptom is that it last at least 24 hours. It might be continuous, but if it is not, then it needs to be recurring throughout the day for at least 24 hours.
Does your neurologist have access to any of the major university headache clinics? I know you feel that migraines are the result and not the cause of your severe pain, but, the reverse is often the case in complicated migraine.
I'm sorry I don't have anything better to add. I was not a neurologist and really don't have neurologist training. What I know about it ahs been the reading I have done in the last year+ about MS. But, you are very welcome here, we can all understand severe pain. One more thought. Sometimes Pain Management experts can tell what the problem is by the pain's behavior.
Lots of Hugs and good luck!
Quix
Thank you all for your wonderful support!! Believe me I really do feel the comforting coming from all of you! I feel like this is the only place I can really say how I feel. My children and husband...........they know I am in pain, but you look good they say. My husband says maybe if you getup and do something you'll feel better. I would feel better if I COULD get up!
Yes the pain is at the base of my skull and in my neck. It NEVER goes away. This all started in Jan. with neck and ear pain. It has just grown into many more sx since then. I am wondering if I should see a Rhume. maybe fibro?? At this point, I'm just at a loss. Woke up this morning, could hardly move. By the time I think i'm ready to start moving around, the neck pain is full blown.
I really really thank all of you wonderful people for being here for me. I promise to keep you posted.
Love and Blessings,
Beth
Yes the pain is at the base of my skull and in my neck. It NEVER goes away. This all started in Jan. with neck and ear pain. It has just grown into many more sx since then. I am wondering if I should see a Rhume. maybe fibro?? At this point, I'm just at a loss. Woke up this morning, could hardly move. By the time I think i'm ready to start moving around, the neck pain is full blown.
I really really thank all of you wonderful people for being here for me. I promise to keep you posted.
Love and Blessings,
Beth
Hey Nikki -
I'm so sorry for you pain. I don't have a lot to offer, but wanted to mention a few things since I've had unrelenting neck and base of skull pain for so many years. I only found relief from various positions that take the pressure off, and from stretching it.
If you can, slowly drop your shoulders down, each and everytime you think about it. The pain causes you to tighten them up and you don't even realize your doing it. This clinching makes it worse. I use to lie hanging my head off the end of my bed (I know sounds nuts) but it was the only thing to make me relax my head completely and stretch those muscles.
You can drop them down and then lean your head slowly from side to side too. Also When you sleep, you have to some how get the pressure off that neck. Is it primarily in one side? But, by the end of the day you feel all jammed up?
I'm sorry if you've tried these things, just know how horribly painful it is and hope some of the things I have done can help you. I also took naproxen for it, helped only a little, but a little does a lot of good sometimes.
I hope it subsides a little for you,
SL
I'm so sorry for you pain. I don't have a lot to offer, but wanted to mention a few things since I've had unrelenting neck and base of skull pain for so many years. I only found relief from various positions that take the pressure off, and from stretching it.
If you can, slowly drop your shoulders down, each and everytime you think about it. The pain causes you to tighten them up and you don't even realize your doing it. This clinching makes it worse. I use to lie hanging my head off the end of my bed (I know sounds nuts) but it was the only thing to make me relax my head completely and stretch those muscles.
You can drop them down and then lean your head slowly from side to side too. Also When you sleep, you have to some how get the pressure off that neck. Is it primarily in one side? But, by the end of the day you feel all jammed up?
I'm sorry if you've tried these things, just know how horribly painful it is and hope some of the things I have done can help you. I also took naproxen for it, helped only a little, but a little does a lot of good sometimes.
I hope it subsides a little for you,
SL
You are so right. The waiting is the hardest part of all of this. So many of us that are having problems have appointments at least a couple of months away, while we are suffering right now. I now that we are not the only patients the doctor's have, but the waiting is murder. it's a wonder I have any hair left on my head after all these years of doctor's and test results.
At least I have a diagnosis of MS and know what I am dealing with. Of course other things can happen to the body and the waiting game starts all over again.
If it offers you any comfort, know that the members here are all behind you, every step of the way. I wish we could all be with you to give you the big hugs and hand holding that each of us could use. At least feel our energy and sap some of the strength we have, to get you through all of this.
You are never alone...even though we have never met.
Heather
At least I have a diagnosis of MS and know what I am dealing with. Of course other things can happen to the body and the waiting game starts all over again.
If it offers you any comfort, know that the members here are all behind you, every step of the way. I wish we could all be with you to give you the big hugs and hand holding that each of us could use. At least feel our energy and sap some of the strength we have, to get you through all of this.
You are never alone...even though we have never met.
Heather
Beth,
Hello my name is Mike. I can so feel your frustration. My problems all began two and a half years ago with neck problems and severe headaches. I am still in limbo land with my next appointment on May 6. One thing I will say Your doc said he was not giving up, that is a good sign. Hang in there. I have been here for a relatively short time and have found great support. Good luck to you. I look forward to reading your future posts.
God Bless,
Mike
Hello my name is Mike. I can so feel your frustration. My problems all began two and a half years ago with neck problems and severe headaches. I am still in limbo land with my next appointment on May 6. One thing I will say Your doc said he was not giving up, that is a good sign. Hang in there. I have been here for a relatively short time and have found great support. Good luck to you. I look forward to reading your future posts.
God Bless,
Mike
Hey Sweetie,
Hate to hear you're having a hell of a time... have you tried acupuncture or massage for your neck pain.. my pcp had me to visit the chiropractic for an alignment and that helped with the neck pain and migraines... my pcp is an DO (ostepathic) and she did this thing to level out my shoulders because their were drooping so bad, and it helped greatly.
I don't know what to say about 21 days on the heart monitor I wore it for a weekend and thought I was dying... darling hang in there, and my prayers are with you. I started out with the muscle weakness just on my left side, and now it radiates on both sides into paralysis so be strong... remeber everyday " THIS TOO SHALL PASS"... stay home get the rest your need if going back to work is not going to easy for you, I know that easier said than done, I wouldn't waste my time looking for another job if you didn't have to, that's just putting good energy that your body needs to waste.
But really if you can withstand a massage or accupunctue i would try that...
{{{{Hugs and Love}}}}
Talk with you soon,
Vessel
Hate to hear you're having a hell of a time... have you tried acupuncture or massage for your neck pain.. my pcp had me to visit the chiropractic for an alignment and that helped with the neck pain and migraines... my pcp is an DO (ostepathic) and she did this thing to level out my shoulders because their were drooping so bad, and it helped greatly.
I don't know what to say about 21 days on the heart monitor I wore it for a weekend and thought I was dying... darling hang in there, and my prayers are with you. I started out with the muscle weakness just on my left side, and now it radiates on both sides into paralysis so be strong... remeber everyday " THIS TOO SHALL PASS"... stay home get the rest your need if going back to work is not going to easy for you, I know that easier said than done, I wouldn't waste my time looking for another job if you didn't have to, that's just putting good energy that your body needs to waste.
But really if you can withstand a massage or accupunctue i would try that...
{{{{Hugs and Love}}}}
Talk with you soon,
Vessel
First, you are a sweetheart!!! Thank you...........
As for the MRI's all were done with and without contrast. The pain is at the base of my neck. If you bend your head back, right there. I plan on doing some reasearch tomorrow online. Only thing is............as all of you know, that is a good thing and a bad thing. I am going to call tomorrow and make another appt. for a few weeks down the road.
If anyone has any ideas ............throw them over. I plan on leaving no stone unturned.
Many Many Many Blessings
Love,
Beth
As for the MRI's all were done with and without contrast. The pain is at the base of my neck. If you bend your head back, right there. I plan on doing some reasearch tomorrow online. Only thing is............as all of you know, that is a good thing and a bad thing. I am going to call tomorrow and make another appt. for a few weeks down the road.
If anyone has any ideas ............throw them over. I plan on leaving no stone unturned.
Many Many Many Blessings
Love,
Beth
First of all...stick with the job that has the insurance! Don't leave if they are not giving you a hard time and even if they are, stay with the insurance!
Secondly, like I said, make an appointment with him for 2 weeks from now and let him know you are desperate and you need him! He said that he has a few more ideas and you want to get on with your life...explain that to him and ask him what his ideas are.
I don't know that the neck problem would have shown up on the MRI but that doesn't mean that it won't on the next one right? Did you have contrast? That is something you can look into right?
Honey, hang in there...we are not going anywhere and we will help all we can...I can feel your pain and I hope you believe me when I say that I truly wish I could just come over and take it all away. Keep talking and someone else will come with another idea that we haven't even fathomed yet...that is what is so great about being a part of this forum!
Lots and Lots and Lots of Hugs,
Rena
Secondly, like I said, make an appointment with him for 2 weeks from now and let him know you are desperate and you need him! He said that he has a few more ideas and you want to get on with your life...explain that to him and ask him what his ideas are.
I don't know that the neck problem would have shown up on the MRI but that doesn't mean that it won't on the next one right? Did you have contrast? That is something you can look into right?
Honey, hang in there...we are not going anywhere and we will help all we can...I can feel your pain and I hope you believe me when I say that I truly wish I could just come over and take it all away. Keep talking and someone else will come with another idea that we haven't even fathomed yet...that is what is so great about being a part of this forum!
Lots and Lots and Lots of Hugs,
Rena
Thanks for your reply. Like I said eariler, I know hes not giving up, its just the waiting thing. Also, the main complaint other than the fatigue, vision, dizziness, etc, is the pain I am having in my neck. I cant even put my head forward without it radiating all the way down my spine. My doc said he has a few more ideas and we will discuss it on my next appt. That's not till JULY!!! Discuss it now! He does acknowledge that I am having left side weakness. I showed him the brusies from falling. In my opinion, and I know im not a doctor, if we could find the root of the neck problem, we would have answers. He has MRI'd everything, so wouldn't it have shown up? I dont know .............I'm a mess right now. He said I could return to work if I felt up to it. H E L L no I dont feel up to it!
My job requires me to be on my feet ALL day and head forward looking down into a computer screen that is in a cabinet of sorts. Plus face to face with the public. I know I should look into changing jobs, but right now I need the insurance. I feel between a rock and a hard place.
Thanks for being there and supporting me
Hugs,
Beth
My job requires me to be on my feet ALL day and head forward looking down into a computer screen that is in a cabinet of sorts. Plus face to face with the public. I know I should look into changing jobs, but right now I need the insurance. I feel between a rock and a hard place.
Thanks for being there and supporting me
Hugs,
Beth
Hi Beth...I am so sorry and can feel your frustration clearly and I think that I can somewhat relate to what you are feeling. It is very frustrating when the doctor you rely on knowing what is happening to you doesn't really have a clue! We are brought up thinking that doctors should know everything and when they get stumped it is a real blow to us.
I have been dealing with the unknown for about a year now and after seeing two neurologists who did nothing to help I am now under the care of a Rheumatologist. I went to see her today and while she didn't have any steadfast answers, she did something that no one else has...she took me seriously and didn't just give me some drugs and tell me to see how they work! I have been through that over and over and over again. She did some blood tests and did a full work up and ordered a bone scan. I am to see her again in June for the results and even if she has no answers for me I feel like I can appreciate her because she is trying.
It sounds as though you have a neurologist that is fairly easy to talk to and that is very important. You need to let him know very clearly that you can't go on just waiting for the results of trying different meds. Explain that knowing what is wrong is very important and if you do some research, I am sure that you may be able to suggest a few options for him. I went for a full year not knowing anything and it was Quix that suggested I see a Rheumatologist for my symptoms. I then asked my family doctor if there was a possibility that I might get to see one and she booked the appointment.
I really hope that you are able to get to the bottom of your problems with the help of this doctor but please don't forget that there are other specialities out there that may be able to help. We are here for you and will offer as much support as possible and if there is any research you need help with, just ask ok?
Please keep in touch and let us know how you are doing...and I think making an appointment with him for 2 weeks from now certainly will not hurt...if nothing else it will ease some of the stress you are feeling knowing that it is there.
Lots of Hugs,
Rena
I have been dealing with the unknown for about a year now and after seeing two neurologists who did nothing to help I am now under the care of a Rheumatologist. I went to see her today and while she didn't have any steadfast answers, she did something that no one else has...she took me seriously and didn't just give me some drugs and tell me to see how they work! I have been through that over and over and over again. She did some blood tests and did a full work up and ordered a bone scan. I am to see her again in June for the results and even if she has no answers for me I feel like I can appreciate her because she is trying.
It sounds as though you have a neurologist that is fairly easy to talk to and that is very important. You need to let him know very clearly that you can't go on just waiting for the results of trying different meds. Explain that knowing what is wrong is very important and if you do some research, I am sure that you may be able to suggest a few options for him. I went for a full year not knowing anything and it was Quix that suggested I see a Rheumatologist for my symptoms. I then asked my family doctor if there was a possibility that I might get to see one and she booked the appointment.
I really hope that you are able to get to the bottom of your problems with the help of this doctor but please don't forget that there are other specialities out there that may be able to help. We are here for you and will offer as much support as possible and if there is any research you need help with, just ask ok?
Please keep in touch and let us know how you are doing...and I think making an appointment with him for 2 weeks from now certainly will not hurt...if nothing else it will ease some of the stress you are feeling knowing that it is there.
Lots of Hugs,
Rena
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