Aa
Crying in Limbo Land, what now?
I had my follow-up after my LP with my neurologist today. She said that everything came back fine; no evidence of any disease; my CSF and blood work were all good. I asked her a few specific questions, like "no Lyme disease?" and she said no. She was just about positive that I didn't have MS. She didn't suggest anything else, just sat there and let me talk about my brain lesions, tremors, dizziness, occipital headaches, aggravated urinary symptoms with a buzzing feeling, and extreme fatigue.
I mentioned my old diagnosis of Fibromyalgia, and said that it wasn't enough to explain what was going on, and that I wasn't sure that it fit at all, as I had improved my health through exercise and diet, and the fibro symptoms had pretty much gone away. She said that positive changes can improve symptoms, with a smile that set my teeth on edge. I told her that I had continued to exercise and eat right through herniated discs and other problems; that it wasn't until I woke up with acute onset tremors that I became so fatigued that I could hardly do anything and put on weight.
She scrunched up her face and said that she would send me for new spine MRIs, from a different angle than the others, to make sure they weren't missing thing, but she was certain that I didn't have MS.
She suggested I see a rheumatologist I had seen in the past, who had pretty much just ruled out ankylosing spondilitis, and I told her that he had just had his assistant consult with me, talked to me briefly, did the blood test, went to Joshua Tree for several weeks, and came back and told me I should take anti-inflammatories (which my stomach cannot tolerate). My neurologist said he was one of the best diagnostic rheumatologist and if I wanted further diagnosis I should go back to him.
OK, if he's good, I can go see him armed with questions and my timeline and all the tests I've had done since I saw him last.
Speaking of tests, my neurologist wouldn't give me a copy of my test results. I told her that I hadn't received the copies that I had signed a release of information for the day of my LP and blood draw, and she just laughed and said that they had had a hard time retrieving the results. It seems that nurse that refused to have my blood drawn since she didn't understand the orders made such a fuss that the radiologist that performed my procedure wrote out new orders. I went to radiology and got his op notes; he made no mention of the two failed attempts; did say "There are no immediate complications", which kinda sounds he knew some were coming (spinal headache, ouch).
I had to go over to the lab and sign a new release of info. to get the LP and blood test results, which they will mail to me whenever, and was told that I had orders on file for a blood draw from my PCP, thyroid and stuff, which was supposed to be bundled with the blood draw on the day of my LP, so I had to have a draw, then remembered to go back and sign a new release of info. for the new tests. Excuse me for sounding paranoid, but I don't think that my case has been handled efficiently and want my own records. I discovered that I needed to keep my own records some time ago, but this reminded me to not let anything slip by.
My best friend's thyroid tests were in "normal" range, but she felt unwell enough to go to an endocrinologist, who noticed some issues, did a fine needle aspiration, and discovered thyroid cancer. During testing, they discovered a pituitary tumor that was blocking production of vital hormones, and she has to inject herself with human growth hormone every night. She could have been dead by now if she hadn't advocated for herself.
My MRI of my entire spine is scheduled for this Friday, the 25th. My neurologist told me that I didn't need a follow-up appointment; she would call me with the results. I felt a distinct dismissal.
I feel the overwhelming let-down that I have read from others at being left in Limbo Land. I will work on the strength to stand up and keep going, but right now I feel like crying and pounding my heels into the bed. That would probably hurt, though. I will look into finding a therapist to talk this out with, because I feel like I'm being branded a malingerer and doctor shopper and all the things that bad doctors have come up with when I sought a second opinion or continued to have symptoms that they couldn't find a reason for. I know that all of you will act as my support team and emotional therapists, but I can't dump all of this darkness on you. I know it will clear. I know you are there. I feel so alone and lost. I try to remain positive but I'm just so tired.
Whoa, I wasn't going to let that out, but I'll let it stand, to be honest with all of you.
Going for Kleenex...
Kathy
I mentioned my old diagnosis of Fibromyalgia, and said that it wasn't enough to explain what was going on, and that I wasn't sure that it fit at all, as I had improved my health through exercise and diet, and the fibro symptoms had pretty much gone away. She said that positive changes can improve symptoms, with a smile that set my teeth on edge. I told her that I had continued to exercise and eat right through herniated discs and other problems; that it wasn't until I woke up with acute onset tremors that I became so fatigued that I could hardly do anything and put on weight.
She scrunched up her face and said that she would send me for new spine MRIs, from a different angle than the others, to make sure they weren't missing thing, but she was certain that I didn't have MS.
She suggested I see a rheumatologist I had seen in the past, who had pretty much just ruled out ankylosing spondilitis, and I told her that he had just had his assistant consult with me, talked to me briefly, did the blood test, went to Joshua Tree for several weeks, and came back and told me I should take anti-inflammatories (which my stomach cannot tolerate). My neurologist said he was one of the best diagnostic rheumatologist and if I wanted further diagnosis I should go back to him.
OK, if he's good, I can go see him armed with questions and my timeline and all the tests I've had done since I saw him last.
Speaking of tests, my neurologist wouldn't give me a copy of my test results. I told her that I hadn't received the copies that I had signed a release of information for the day of my LP and blood draw, and she just laughed and said that they had had a hard time retrieving the results. It seems that nurse that refused to have my blood drawn since she didn't understand the orders made such a fuss that the radiologist that performed my procedure wrote out new orders. I went to radiology and got his op notes; he made no mention of the two failed attempts; did say "There are no immediate complications", which kinda sounds he knew some were coming (spinal headache, ouch).
I had to go over to the lab and sign a new release of info. to get the LP and blood test results, which they will mail to me whenever, and was told that I had orders on file for a blood draw from my PCP, thyroid and stuff, which was supposed to be bundled with the blood draw on the day of my LP, so I had to have a draw, then remembered to go back and sign a new release of info. for the new tests. Excuse me for sounding paranoid, but I don't think that my case has been handled efficiently and want my own records. I discovered that I needed to keep my own records some time ago, but this reminded me to not let anything slip by.
My best friend's thyroid tests were in "normal" range, but she felt unwell enough to go to an endocrinologist, who noticed some issues, did a fine needle aspiration, and discovered thyroid cancer. During testing, they discovered a pituitary tumor that was blocking production of vital hormones, and she has to inject herself with human growth hormone every night. She could have been dead by now if she hadn't advocated for herself.
My MRI of my entire spine is scheduled for this Friday, the 25th. My neurologist told me that I didn't need a follow-up appointment; she would call me with the results. I felt a distinct dismissal.
I feel the overwhelming let-down that I have read from others at being left in Limbo Land. I will work on the strength to stand up and keep going, but right now I feel like crying and pounding my heels into the bed. That would probably hurt, though. I will look into finding a therapist to talk this out with, because I feel like I'm being branded a malingerer and doctor shopper and all the things that bad doctors have come up with when I sought a second opinion or continued to have symptoms that they couldn't find a reason for. I know that all of you will act as my support team and emotional therapists, but I can't dump all of this darkness on you. I know it will clear. I know you are there. I feel so alone and lost. I try to remain positive but I'm just so tired.
Whoa, I wasn't going to let that out, but I'll let it stand, to be honest with all of you.
Going for Kleenex...
Kathy
Thanks for the advice and prayers. I heard of a neuro nearby that I will look into, that someone on the forum suggested, when I'm ready. I've got a lot to offer a neuro that really loves a challenge!
I think the last two neuros had their minds made up before I showed up, but at least this one had read my history and suggested the LP. The last one suggested I get another brain MRI in a year or more. I'll keep plugging along.
Oh, thanks for all the smiles; I went and looked at the pictures of your family; great stuff! I have no close family; my best friend shares her three grandchildren with me. I have a sister that lives in town, and a nephew with two daughters, but they don't communicate with me much, no matter how often I reach out. Oh well, I've got an online family now!
Kathy
I think the last two neuros had their minds made up before I showed up, but at least this one had read my history and suggested the LP. The last one suggested I get another brain MRI in a year or more. I'll keep plugging along.
Oh, thanks for all the smiles; I went and looked at the pictures of your family; great stuff! I have no close family; my best friend shares her three grandchildren with me. I have a sister that lives in town, and a nephew with two daughters, but they don't communicate with me much, no matter how often I reach out. Oh well, I've got an online family now!
Kathy
Kathy, my advice to you would be to go get a new neurologist. I know it's a hassle going somewhere new because they all want their own test instead of another doctors. But, once a doctor has ran all of the tests that they normally run and have exhausted all other aspects of your complications then that's when they really don't want to treat you any more. We both know not all doctors are like this, in fact I personally think it's only a very few who are. Once they can't diagnose you by doing all the things they know then they start grasping at straws. Like, running repeat test, running test that has nothing to do with your symptoms, sending you to other specialist, you know the run around cycle.
To me this is when it's time to say thank you doc but now I think it's time for both of us to move on. There are a whole lot of neurologist out there and I know there is one who is just waiting for you to walk through the door. Some doctors love the challenge of people like us. It motivates them and in all reality those are the good doctors.
Now, that's my opinion which usually isn't worth a grain of salt but it's truly what I believe. I wish the best for you and please know that we are here for you through it all. You can rant, rave, cry, be depressed, or just want a friend. Regardless of what you need you know you can turn to us at any time of the day or night.
I'll be praying,
Carol
To me this is when it's time to say thank you doc but now I think it's time for both of us to move on. There are a whole lot of neurologist out there and I know there is one who is just waiting for you to walk through the door. Some doctors love the challenge of people like us. It motivates them and in all reality those are the good doctors.
Now, that's my opinion which usually isn't worth a grain of salt but it's truly what I believe. I wish the best for you and please know that we are here for you through it all. You can rant, rave, cry, be depressed, or just want a friend. Regardless of what you need you know you can turn to us at any time of the day or night.
I'll be praying,
Carol
Ha ha ha; even numbers, Mary, that's why I bought two pints of low fat frozen yogurt! Yesterday's was Mint Chocolate Chip; today's is vanilla chocolate swirl (actually that one is fat free)! I love this organic stuff, Stonyfield Farm.
See, Maggie, chocolate all the way. My favorite flavor is Cookies N Dreams, but no store in my area carries it any more. I went to a basketball game once and ate dinner at a New Seasons Market on the way there. They had Cookies and Dreams, so I ate the whole pint at the game!
I do understand that I have the right to all my records; It's called HIPAA, or Health Information Portability and Accountability act. My best friend is a compliance officer and teaches health care professionals (including doctors) about the law that has been in effect for several years now. Some people are slow to comply, and others just have incompetent staff. They are also supposed to keep our info. private, so I kind of cringed while I was waiting for my LP and the retired nurse in the next bed was asked to tell her name, date of birth, why she was there. I learned that she was there for a complete historectomy and the doctor told her he was going to make sure they get "it all".
After my appointment yesterday I picked up the radiologist's op notes, what his interpretation of how he did my spinal tap was, and filled out the form (for the second time) to get the LP and blood work results sent to me. They have 30 days by law, but most places are quicker than that.
I have no compunction about, if I am stonewalled for too long, asking my friend to come with me and have a friendly chat about HIPAA violations. I've told people that I know someone that can come in and train their staff when they really ticked me off, like my first neuro's office staff. I should probably hold off on stuff like that, since it probably shows up in my chart that I'm a difficult patient or something..
Rena, I've been so bitter that I have wrinkles around my mouth from my face puckering up. I didn't mean to sound flip; I was so relieved at everyone's kindness and supportive comments that I was getting silly. I know it's not that simple to get through things, or I'd be out earning lots of money and climbing mountains on my vacations. I couldn't sleep last night, because my mind wouldn't let go of everything, and my tremors were jerking me around a bit. First thing when I woke up this morning, I turned on my computer to see if there can be false negatives in spinal taps. I got sidetracked here to all of you, because you're my new family, and I love to check in and see how things are going.
See, Maggie, chocolate all the way. My favorite flavor is Cookies N Dreams, but no store in my area carries it any more. I went to a basketball game once and ate dinner at a New Seasons Market on the way there. They had Cookies and Dreams, so I ate the whole pint at the game!
I do understand that I have the right to all my records; It's called HIPAA, or Health Information Portability and Accountability act. My best friend is a compliance officer and teaches health care professionals (including doctors) about the law that has been in effect for several years now. Some people are slow to comply, and others just have incompetent staff. They are also supposed to keep our info. private, so I kind of cringed while I was waiting for my LP and the retired nurse in the next bed was asked to tell her name, date of birth, why she was there. I learned that she was there for a complete historectomy and the doctor told her he was going to make sure they get "it all".
After my appointment yesterday I picked up the radiologist's op notes, what his interpretation of how he did my spinal tap was, and filled out the form (for the second time) to get the LP and blood work results sent to me. They have 30 days by law, but most places are quicker than that.
I have no compunction about, if I am stonewalled for too long, asking my friend to come with me and have a friendly chat about HIPAA violations. I've told people that I know someone that can come in and train their staff when they really ticked me off, like my first neuro's office staff. I should probably hold off on stuff like that, since it probably shows up in my chart that I'm a difficult patient or something..
Rena, I've been so bitter that I have wrinkles around my mouth from my face puckering up. I didn't mean to sound flip; I was so relieved at everyone's kindness and supportive comments that I was getting silly. I know it's not that simple to get through things, or I'd be out earning lots of money and climbing mountains on my vacations. I couldn't sleep last night, because my mind wouldn't let go of everything, and my tremors were jerking me around a bit. First thing when I woke up this morning, I turned on my computer to see if there can be false negatives in spinal taps. I got sidetracked here to all of you, because you're my new family, and I love to check in and see how things are going.
It is really clear that you need me to come kick some behind!! I can't believe all of this, well I do but! That is why I am not pushing for more tests at this time need to regroup.
my neuro on the intake form said they do NOT release the reports to patients only parts. I find that odd, so my plan is to get them from my GP!!! I am not dumb.
Anyway I luckily will continue to be monitored and just waitng for my next sign of flair to go in and demand answers.
In your corner just sending big hugs and someone to talk to is a great idea did it years ago and it really helped to hear I was NOT crazy and that it was medical to keep searching. Now I can through that out for my doctors I have a pysc dx of NOT crazy!
OH I feel for you hang in there want me to send you girl scout cookies i am into my forth box myself! I believe in even numbers of boxes so my thighs are not off one heavier then the other and further complicate my walking!!! :-)
Hugs
Mary
my neuro on the intake form said they do NOT release the reports to patients only parts. I find that odd, so my plan is to get them from my GP!!! I am not dumb.
Anyway I luckily will continue to be monitored and just waitng for my next sign of flair to go in and demand answers.
In your corner just sending big hugs and someone to talk to is a great idea did it years ago and it really helped to hear I was NOT crazy and that it was medical to keep searching. Now I can through that out for my doctors I have a pysc dx of NOT crazy!
OH I feel for you hang in there want me to send you girl scout cookies i am into my forth box myself! I believe in even numbers of boxes so my thighs are not off one heavier then the other and further complicate my walking!!! :-)
Hugs
Mary
"Rena, ya' know, maybe some favorite ice cream, sorbet, or gelato can help take the bitterness out of your mouth."
I hope that your journey isn't as long and as arduous as some and that you don't get to the point of being bitter...it's sometimes hard to find understanding people when you become bitter and
"maybe it just takes time and breathing fresh air and drinking cool, clear water, and all the simple pleasures in life."
Good Luck with that.
Rena
I hope that your journey isn't as long and as arduous as some and that you don't get to the point of being bitter...it's sometimes hard to find understanding people when you become bitter and
"maybe it just takes time and breathing fresh air and drinking cool, clear water, and all the simple pleasures in life."
Good Luck with that.
Rena
Kathy,
I wanted to say how sorry I am for the news you got from your test results and I can so relate it is scary. I read the first paragraph and must admit it took me back to about 6 weeks ago. It was my last visit with my neuro all over again. In the short time I have been with this group I would say don't give up. I would demand my results and do not take no for an answer. Someone will listen, the answer is out there to figure out. I look at my problems as I am a challenge that some Doctor will learn from in order to help others. That keeps me going some days. I do however have days where the "mountain" and the "search" get to be to much. The pain makes me want to give up. Hang in there! I am sure my insurance company hates me I have had over 11 MRIs in two years. I am still in limbo land. I have a second appt. with an MS specialist. He is no magic man believe me. My regular neuro gave me the abandoned feleling as well. Her fix before sending me to the MS expert was two sessions of PT was all I needed. I am so sore daily it hurts to about anything.
That in a not shell is my quick stint to limbo land I hope it helps. I hope you find this fourm as helpful as I have. it sure helps me through the rough spots. My thoughts and prayers are with you. take care..........God Bless. mike
I wanted to say how sorry I am for the news you got from your test results and I can so relate it is scary. I read the first paragraph and must admit it took me back to about 6 weeks ago. It was my last visit with my neuro all over again. In the short time I have been with this group I would say don't give up. I would demand my results and do not take no for an answer. Someone will listen, the answer is out there to figure out. I look at my problems as I am a challenge that some Doctor will learn from in order to help others. That keeps me going some days. I do however have days where the "mountain" and the "search" get to be to much. The pain makes me want to give up. Hang in there! I am sure my insurance company hates me I have had over 11 MRIs in two years. I am still in limbo land. I have a second appt. with an MS specialist. He is no magic man believe me. My regular neuro gave me the abandoned feleling as well. Her fix before sending me to the MS expert was two sessions of PT was all I needed. I am so sore daily it hurts to about anything.
That in a not shell is my quick stint to limbo land I hope it helps. I hope you find this fourm as helpful as I have. it sure helps me through the rough spots. My thoughts and prayers are with you. take care..........God Bless. mike
Forget low fat frozen yoghurt, go straight for the German Chocolate cake! Trust me, you will feel better after! It's proven chocolate has somthing in it that boosts our mood!
Be sure to get copies oy your lab work. It can be frustrating trying to get them from your dr. Is the lab that is running the tests local? You can get them directly from them if it is, or call them and request a copy if not. Don't take no for an answer, you are entitled to them. Good luck, sure wish I was going to Vegas! I love it! Pull a few handles for me while you are there. If you win millions, maybe you can share with us all, LOL! Gentle hugs, Maggie
Be sure to get copies oy your lab work. It can be frustrating trying to get them from your dr. Is the lab that is running the tests local? You can get them directly from them if it is, or call them and request a copy if not. Don't take no for an answer, you are entitled to them. Good luck, sure wish I was going to Vegas! I love it! Pull a few handles for me while you are there. If you win millions, maybe you can share with us all, LOL! Gentle hugs, Maggie
Hi, LA,
My insurance doesn't cover an MS specialist, but the out of network costs aren't too high, so I may try OHSU if this isn't resolved in some other way soon. I'll just make sure any tests they might want are ordered through my primary care doctor at a covered facility.
I'll hang on and push for answers. Thanks for the input.
Take care,
Kathy
My insurance doesn't cover an MS specialist, but the out of network costs aren't too high, so I may try OHSU if this isn't resolved in some other way soon. I'll just make sure any tests they might want are ordered through my primary care doctor at a covered facility.
I'll hang on and push for answers. Thanks for the input.
Take care,
Kathy
Wanna, Rena, and Elaine,
Thank you for kind, supportive, and tough cookie comments. I'll be up and swinging in no time. When I get my MRIs on Friday, I'll take them with me on disc. I get to spend May 2 - 8 in Las Vegas, going back and forth between sunshine and air-conditioned casinos, and forget all the health issues (as best I can!). My friend with the conference down there is taking her laptop, so maybe I can check in and share some good mood with everyone.
I do believe I'll find my answers some day. I just need to be patient, persistant, and do the best I can.
Rena, ya' know, maybe some favorite ice cream, sorbet, or gelato can help take the bitterness out of your mouth. Then again, maybe it just takes time and breathing fresh air and drinking cool, clear water, and all the simple pleasures in life. Sometimes simple is all I have the strength for.
I'll set aside all my MRIs and reports for a while and pet Fluffy, read a good book, and get some sleep.
Thank you all so much for being you.
Kathy
Thank you for kind, supportive, and tough cookie comments. I'll be up and swinging in no time. When I get my MRIs on Friday, I'll take them with me on disc. I get to spend May 2 - 8 in Las Vegas, going back and forth between sunshine and air-conditioned casinos, and forget all the health issues (as best I can!). My friend with the conference down there is taking her laptop, so maybe I can check in and share some good mood with everyone.
I do believe I'll find my answers some day. I just need to be patient, persistant, and do the best I can.
Rena, ya' know, maybe some favorite ice cream, sorbet, or gelato can help take the bitterness out of your mouth. Then again, maybe it just takes time and breathing fresh air and drinking cool, clear water, and all the simple pleasures in life. Sometimes simple is all I have the strength for.
I'll set aside all my MRIs and reports for a while and pet Fluffy, read a good book, and get some sleep.
Thank you all so much for being you.
Kathy
Kathy,
Have you been able to see a MS specialist? I saw two neuros before I saw my MS doctor. If it is at all possible it would be a good idea...if you can.
I am really sorry you are going through this. I don't know how you all hang on without going crazy. If I felt the way I feel and didn't know what the reason was, I'd be so upset. Please do push for an answer for yourself.
LA
Have you been able to see a MS specialist? I saw two neuros before I saw my MS doctor. If it is at all possible it would be a good idea...if you can.
I am really sorry you are going through this. I don't know how you all hang on without going crazy. If I felt the way I feel and didn't know what the reason was, I'd be so upset. Please do push for an answer for yourself.
LA
Kathy,
I am very sorry for your disappointment. Craig and I have been through this more times than I would ever want to remember. I like Rena's advice. Take some time, regroup, and put this appointment behind you.
Please get actual copies of your test results...the LP, all blood work, all MRI reports and actual films or cd's of the MRI's. Go to the centers where everything was done. Don't depend on that horrible neuro to give you anything.
Please take care and stay with us. There is an answer for you. You just haven't found the right doctor yet.
Elaine
I am very sorry for your disappointment. Craig and I have been through this more times than I would ever want to remember. I like Rena's advice. Take some time, regroup, and put this appointment behind you.
Please get actual copies of your test results...the LP, all blood work, all MRI reports and actual films or cd's of the MRI's. Go to the centers where everything was done. Don't depend on that horrible neuro to give you anything.
Please take care and stay with us. There is an answer for you. You just haven't found the right doctor yet.
Elaine
Oh, Kathy...from the time I read your post after your LP I was hoping desperately that you would get some sort of answer be it positive for MS or something else although of course we all don't want a diagnosis of anything but the not knowing is so discomforting at the same time.
I don't think that your journey is over and there are other routes that can be taken...like the rheumatologist or searching out a new neurologist with new ideas. I understand how frustrating this all is and I think all of us feel that a journey to the South Pacific would be more in tune with what we want but please don't let this get you down too much ok? (yeah I know...easy for me to say right?)
Once you get over this hump though I am willing to bet that you are going to come out fighting and you will find the answer that either will hold you over for now or you will keep searching to get that final answer. You seem like a pretty tough cookie and you are not going to take this lying down...I am behind you 100%! I am taking a little bit of a rest right now because emotionally I am drained and sometimes we need a little breakdown to let out the bitterness we have in our mouths from the b.s. we have shoved down our throats...BUT...give me another week and I am going to have my gloves on again and I am going to come out fighting and you are welcome to join me in my ring!
So, grab some nice decadent food that you wouldn't normally eat and hunker down with a good movie like the Bucket List and have a good bawl and take a week to lick your wounds and you will be back for the next round in no time!
Please know that I mean this in only the most positive way and that I am here for you ok?
Lots of Hugs,
Rena705
I don't think that your journey is over and there are other routes that can be taken...like the rheumatologist or searching out a new neurologist with new ideas. I understand how frustrating this all is and I think all of us feel that a journey to the South Pacific would be more in tune with what we want but please don't let this get you down too much ok? (yeah I know...easy for me to say right?)
Once you get over this hump though I am willing to bet that you are going to come out fighting and you will find the answer that either will hold you over for now or you will keep searching to get that final answer. You seem like a pretty tough cookie and you are not going to take this lying down...I am behind you 100%! I am taking a little bit of a rest right now because emotionally I am drained and sometimes we need a little breakdown to let out the bitterness we have in our mouths from the b.s. we have shoved down our throats...BUT...give me another week and I am going to have my gloves on again and I am going to come out fighting and you are welcome to join me in my ring!
So, grab some nice decadent food that you wouldn't normally eat and hunker down with a good movie like the Bucket List and have a good bawl and take a week to lick your wounds and you will be back for the next round in no time!
Please know that I mean this in only the most positive way and that I am here for you ok?
Lots of Hugs,
Rena705
Please get your blood test results. Another specialist might "see" something the neuro does not.
That was the case with me. Not that he was not an excellent neurologist, he knew his stuff, but he sent me to someone else in case he "missed" something.
Ya know, I don't think the low-fat stuff is a potent as fully loaded, fat-wonderful ice cream, but it does carry less guilt!
(((BIG HUGS)))
Wanna
That was the case with me. Not that he was not an excellent neurologist, he knew his stuff, but he sent me to someone else in case he "missed" something.
Ya know, I don't think the low-fat stuff is a potent as fully loaded, fat-wonderful ice cream, but it does carry less guilt!
(((BIG HUGS)))
Wanna
The neuro said my blood tests were good, but I haven't seen them. I do know that all the tests weren't done and that I had to have more blood drawn today.
I did eat a medicinal half pint of low fat frozen yogurt. :o)
OK, you all have me starting to smile again! I'll probably have a few more boo hoo moments tonight, but you really do help.
Hugs back at you!
Kathy
I did eat a medicinal half pint of low fat frozen yogurt. :o)
OK, you all have me starting to smile again! I'll probably have a few more boo hoo moments tonight, but you really do help.
Hugs back at you!
Kathy
Santana,
Yes, my brain MRI showed multiple white matter lesions, and my other tests came back normal. She wouldn't approve a VEP since my other tests were fine.If no one has a good explanation for the brain lesions, then I'm moving on to neuro #3 if my current one won't follow up on what I DO have. There are still the spine MRI, which might show something. I'd like some kind of answer, besides we don't have an answer!
Tammy,
Thanks for the hugs! I'm starting to get a slight smile on my face, with your kind words and support, as well as great input from others.
Kathy
Yes, my brain MRI showed multiple white matter lesions, and my other tests came back normal. She wouldn't approve a VEP since my other tests were fine.If no one has a good explanation for the brain lesions, then I'm moving on to neuro #3 if my current one won't follow up on what I DO have. There are still the spine MRI, which might show something. I'd like some kind of answer, besides we don't have an answer!
Tammy,
Thanks for the hugs! I'm starting to get a slight smile on my face, with your kind words and support, as well as great input from others.
Kathy
This sounds like a completely awful day for you as you have no more answers than when you started.
Cry, scream, rant, blow your nose..do all of this sweetie. We understand and are here for you.
Sorry if you have posted this before, but how are all your blood test results? Is everything normal or is there anything abnormal in the results?
(((HUGS)))
Wanna
Cry, scream, rant, blow your nose..do all of this sweetie. We understand and are here for you.
Sorry if you have posted this before, but how are all your blood test results? Is everything normal or is there anything abnormal in the results?
(((HUGS)))
Wanna
Hi Kathy!
God, I am so sorry for that disappointing appointment you had today. I know you had a positive attitude this morning and you were hoping for answers!
I do know and understand how frustrated, hurt and angry you feel....Please vent all you want, we are here for you....
Please don't feel bad if you have to go talk to someone about how you're feeling, because honestly, I'm thinking of asking for the same when I go see OTF on Friday...
I am nearing the point that I'm probably going to explode if I don't get this out--and soon!
My daughter suggested that I go talk to someone, as well--and you're right, it hurts--even though they love and care about us....
I think seeing a therapist could only benefit me in the long run. It never hurts to have someone else to bounce ideas off of.....
Take care, Kathy....I'm here if you need to talk, ok?
HUGS!
Tammy
God, I am so sorry for that disappointing appointment you had today. I know you had a positive attitude this morning and you were hoping for answers!
I do know and understand how frustrated, hurt and angry you feel....Please vent all you want, we are here for you....
Please don't feel bad if you have to go talk to someone about how you're feeling, because honestly, I'm thinking of asking for the same when I go see OTF on Friday...
I am nearing the point that I'm probably going to explode if I don't get this out--and soon!
My daughter suggested that I go talk to someone, as well--and you're right, it hurts--even though they love and care about us....
I think seeing a therapist could only benefit me in the long run. It never hurts to have someone else to bounce ideas off of.....
Take care, Kathy....I'm here if you need to talk, ok?
HUGS!
Tammy
From what I understand from your post you have lesions of your brain, and your LP was normal, is this right? And your neuro said that she was possitive that you didn't have MS? My brain MRI showed multiple white matter lesions, My VEP was abnormal, but my LP and all other blood test were all normal too! My neuro said that he thought that I had ADEM but that MS could not be totally excluded without monitoring me for some time. He has sent me for MRI's of the brain every six months for two years now. So far no change in the lesions, no enhancement, and no new lesions. Also no new attacks. I don't know how long he will monitor me for changes but he said for some time, but still he has not completely ruled out MS eventhough My LP was negative with no O banding and all blood test were normal. I am not sure that with brain lesions that your neuro can saftely rule out MS with out monitoring for new lesions in space and time. You might want to ask Quix or some of the others thier opinion, but this is what my neuro told me about my situation that sounds pretty similar to yours as far as test results go! Try not to worry too much, it does get easier to deal with the feeling of being ignored or dismissed. And yes you do need to stand up for yourself and you do have the right to be in some control of your own health. I posted a comment on the other thread that you might find helpful in this situation!
Santana
Santana
Thank, I needed that hug!
She's not a MS specialist, but came highly recommended by my PCP and a neuro-radiologist that my best friend works for. MS specialists don't seem to work in my insurance network.
The whole LP experience was frustrating, as well as today. And then my best friend suggested I see a therapist. I knew it was probably time, but it hurt a little, even though I know it's because she cares.
Kathy
She's not a MS specialist, but came highly recommended by my PCP and a neuro-radiologist that my best friend works for. MS specialists don't seem to work in my insurance network.
The whole LP experience was frustrating, as well as today. And then my best friend suggested I see a therapist. I knew it was probably time, but it hurt a little, even though I know it's because she cares.
Kathy
I'm sorry you feel like you got dismissed today. That is hard, I know, been there done that. It is such a let down when you know yourself that something is not right. I just can't believe that she is going to let you go with no answers as to what is causing your problems. I'm sorry for asking but I haven't been on much lately, was she a MS specialist?
You have every right to feel down right now and yes we are all here for you. Just don't give up. You have to keep fighting for answers. A therapist is a good idea and may help you to put this in a good perspective. I'm just sorry that this has brought you to this point. The whole appointment sounds like it was very frustrating for you.
I too am a limbo lander and although there are days where I want to just give up, everyone here supports me and gives me the boost to carry on, just as we all will for you. You may need to search for a new neuro. You deserve answers.
Sending big hugs your way
Moki
You have every right to feel down right now and yes we are all here for you. Just don't give up. You have to keep fighting for answers. A therapist is a good idea and may help you to put this in a good perspective. I'm just sorry that this has brought you to this point. The whole appointment sounds like it was very frustrating for you.
I too am a limbo lander and although there are days where I want to just give up, everyone here supports me and gives me the boost to carry on, just as we all will for you. You may need to search for a new neuro. You deserve answers.
Sending big hugs your way
Moki
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