Aa
on the road to nowhere...
...after getting my most recent blood test results yesterday.
i got a call from the rheumatologist who ordered all the autoimmune & lyme disease tests and they were normal. i know i should be happy that i didn't screen positive for lupus or lyme, but instead i cried my eyes out.
the only thing that showed up was that my blood sugar was extremely low, and i wasn't even fasting. it was 56 with the normal range being 70-100. there is a suspicion that it was an errant result, so i went back in to have another fasting blood draw this a.m. just to make sure.
so where do we go from here? my neurologist mentioned a lumbar puncture to rule out any inflammation in the CSF, but the rheumatologist doesn't feel that is warranted. i am sad and confused.
here in the U.S., tomorrow is thanksgiving day, and i am trying desperately to recognize the things for which i am grateful. i am blessed with an incredibly supportive husband and beautiful daughter, but given all my health problems, i am beginning to feel they'd be better off without me.
please do not misunderstand--i have no intention of hurting myself. the guilt i feel about how my situation has completely derailed our lives is just really overwhelming sometimes and i want to run away so my little family has a chance to have a normal life.
i got a call from the rheumatologist who ordered all the autoimmune & lyme disease tests and they were normal. i know i should be happy that i didn't screen positive for lupus or lyme, but instead i cried my eyes out.
the only thing that showed up was that my blood sugar was extremely low, and i wasn't even fasting. it was 56 with the normal range being 70-100. there is a suspicion that it was an errant result, so i went back in to have another fasting blood draw this a.m. just to make sure.
so where do we go from here? my neurologist mentioned a lumbar puncture to rule out any inflammation in the CSF, but the rheumatologist doesn't feel that is warranted. i am sad and confused.
here in the U.S., tomorrow is thanksgiving day, and i am trying desperately to recognize the things for which i am grateful. i am blessed with an incredibly supportive husband and beautiful daughter, but given all my health problems, i am beginning to feel they'd be better off without me.
please do not misunderstand--i have no intention of hurting myself. the guilt i feel about how my situation has completely derailed our lives is just really overwhelming sometimes and i want to run away so my little family has a chance to have a normal life.
I know how frustrating this whole waiting for an answer is and I send prayers for all of us that Dr. Prince/Princess Charming will show up in our lives and give us the answers and the treatments that WE DESERVE. Trust your instincts..don't give up...keep trying and yell and scream when you have to.
My husband is getting over the dreaded H1N1 virus. Wow, is that a terror. We spent Thanksgiving morning at the emergency room. The rest of Thanksgiving was rather good as my husband got the meds he needed and went to sleep and I went over to a friend's house for a bit.
My computer bit the dust and I'm at the library where they give you only one hour. I haven't read all the posts here, but will when I can. Hugs to you all, Charley.
My husband is getting over the dreaded H1N1 virus. Wow, is that a terror. We spent Thanksgiving morning at the emergency room. The rest of Thanksgiving was rather good as my husband got the meds he needed and went to sleep and I went over to a friend's house for a bit.
My computer bit the dust and I'm at the library where they give you only one hour. I haven't read all the posts here, but will when I can. Hugs to you all, Charley.
I totally agree with you. How can you have inflammation yet no concern.
I havent seen the rheumatologist yet, but when I do believe me I shall be asking that question.
I will let you know how I get on. Mariaxx
I havent seen the rheumatologist yet, but when I do believe me I shall be asking that question.
I will let you know how I get on. Mariaxx
I also showed inflammation in my blood tests (looking for lupus, but the rest of that panel was normal so no Lupus diagnosis. When I asked my Dr why I had inflammation, he had know idea and just wrote me a script for anti-inflammatories....I switched Drs! My current Dr is doing tests, referring me to specialists, etc. So hopefully I will have an answer soon and I hope you will as well.
Maria...Does your rheumy have those LP results hun? Inflammation is inflammation. You have symptoms of inflammation...HUGE symptoms!!!!!
Let ME be the doctor here...you have inflammation on your LP results...hmmm...dot...to dot...to dot...it connects!!!!!...maybe we have something here. Duh!!!!!
Maria, I'm p***ed off for you.
I was told about a "red herring" but at least they were not ignoring it, were willing to test and test until they were certain it was not anything they needed to do anything about, then move on and treat me. Mine scared them, and they were afraid if they preceded with treatment it would come back and haunt them. It was a CYA situation I am sure, but still, they were concerned.
bix67...Sounds like they are throwing CNS vasculitis around without regard to what you might be feeling about it and what it might mean. It's not a simple dx and not one they should simply toss out there.
It amazes me how some doctors will do that...roll dx off their tongue without regard for the human being who is sitting in front of them...the life in front of them...mother, wife, child, student, artist, athlete, singer, writer, lover, dreamer...we are people with lives to live, and we need real anwers, not just a guess. It's not a game to us, it's our life.
And now I'll get off my soapbox...lol.
Have a lovely day...
(((HUGS)))
Wanna :o)
Let ME be the doctor here...you have inflammation on your LP results...hmmm...dot...to dot...to dot...it connects!!!!!...maybe we have something here. Duh!!!!!
Maria, I'm p***ed off for you.
I was told about a "red herring" but at least they were not ignoring it, were willing to test and test until they were certain it was not anything they needed to do anything about, then move on and treat me. Mine scared them, and they were afraid if they preceded with treatment it would come back and haunt them. It was a CYA situation I am sure, but still, they were concerned.
bix67...Sounds like they are throwing CNS vasculitis around without regard to what you might be feeling about it and what it might mean. It's not a simple dx and not one they should simply toss out there.
It amazes me how some doctors will do that...roll dx off their tongue without regard for the human being who is sitting in front of them...the life in front of them...mother, wife, child, student, artist, athlete, singer, writer, lover, dreamer...we are people with lives to live, and we need real anwers, not just a guess. It's not a game to us, it's our life.
And now I'll get off my soapbox...lol.
Have a lovely day...
(((HUGS)))
Wanna :o)
Hi bin well I havent got a clue what blood tests I am having lOL. I think one is ANA again. I want to know why they found so much inflammation in my LP and yet no one is checking out why.
It seems as though as long as the inflammation doesnt belong to the neurologist then they dont care a damn. I mean what is the point of having a lumbur puncture if they just ignore the results. My LP showed a lot of bands in the CNS, but inflammation in the blood test which they say is a negative result for MS, BUT then you read that the blood test result can just be red herring and I might have had an inflammation anywhere at the time.
SO WHAT is the point of having a LP for gods sake if they ignore the results.
Bah humbug LOL.xxx
It seems as though as long as the inflammation doesnt belong to the neurologist then they dont care a damn. I mean what is the point of having a lumbur puncture if they just ignore the results. My LP showed a lot of bands in the CNS, but inflammation in the blood test which they say is a negative result for MS, BUT then you read that the blood test result can just be red herring and I might have had an inflammation anywhere at the time.
SO WHAT is the point of having a LP for gods sake if they ignore the results.
Bah humbug LOL.xxx
hi again, wanna,
well, the CNS vasculitis dx arose through my neuro-ophthalmologist a few weeks back who noted that the arteries feeding into my optic nerve are smaller than he would expect for someone my age. he labeled it vasculitis and referred me to the rheumatologist who ran all my aforementioned blood tests.
i told my neurologist about that and he said that the vasculitis could be isolated to my optic nerves, but then brought up the possibility of CNS vasculitis. he didn't think it was likely after examining me over the past 8.5 months, but wants to further rule it out. that is one of the reasons why he has scheduled me for the LP.
it is frustrating! i am doing okay--not great. the past couple days have been rough with lots of headaches, night sweats, nausea.
i hope all's well on your end.
binx
well, the CNS vasculitis dx arose through my neuro-ophthalmologist a few weeks back who noted that the arteries feeding into my optic nerve are smaller than he would expect for someone my age. he labeled it vasculitis and referred me to the rheumatologist who ran all my aforementioned blood tests.
i told my neurologist about that and he said that the vasculitis could be isolated to my optic nerves, but then brought up the possibility of CNS vasculitis. he didn't think it was likely after examining me over the past 8.5 months, but wants to further rule it out. that is one of the reasons why he has scheduled me for the LP.
it is frustrating! i am doing okay--not great. the past couple days have been rough with lots of headaches, night sweats, nausea.
i hope all's well on your end.
binx
I find it a bit odd that your neuro would suggest CNS vasculitis without a referral to a doctor who specializes in it????? WTH???? I've been through that diagnosis and it isn't fun...nor cheap. Thank God it was ruled out, but it was a scary time while waiting for all the test results.
Frustration!!!!!! Hope you are doing okay.
Wanna :o)
Frustration!!!!!! Hope you are doing okay.
Wanna :o)
thank you all for the really great responses to my post. i did manage to have a nice thanksgiving--we had a very low key day here at home which is in stark contrast to how we usually spend the holiday. i hope everyone else had a nice day yesterday, too.
hi wanna: i haven't gotten all the hard copies of my test results back yet, but the phlebotomist drew 17 different tubes. the ones i do know are: DNA antibody, "sed rate", another was for cardiolipin--all results were in the normal range. i also had lyme titer screening done at Quest labs, which from what i understand is not known for its accuracy. i am looking into pursuing testing through IgeneX in palo alto, ca, just to get a more accurate lyme result. and as far as the docs living in a bubble is concerned--i couldn't have stated it better myself. the neurologist casually states "come back and see me in 3 (or 4 or 6) weeks" after dropping a bomb about possibly having central nervous system vasculitis. that really blows my mind. how can he expect someone to get any rest when they are wondering about such an ominous disease?
additionally--i believe you are right about not solving this mystery before the end of the year. i pray for, but certainly do not expect, answers as we enter 2010. i cautiously reserve the hope to be pleasantly surprised though :-)
hello, stormyrenee: it sounds like you have been through the wringer as well, and i thank you for sharing your story with me, and you're right, we do have a lot of parallels in our symptoms. no one has addressed migraine with me since this all started in january when that was all the ER doc could come up with, and 4 docs are insisting i do not have MS, although i have not bought that conclusion at this point. actually, i haven't bought any conclusion except for the fact that the constellation of symptoms i have are not related to my cervical spine issues. i am due for another brain and c-spine MRI which i hope to have done before the dreaded end of the year, and i will inquire about the migraine possibility with my neuro. he is incredibly brilliant and very well meaning, but has a real attention span problem, so i often have to repeat things over and over again. seeing him is kind of like that movie "groundhog day".
needless to say, i wish you the very best in your pursuit of the holy grail, and look forward to keeping up with you during your journey.
maria: what tests is your neuro going to run next week? i hope your visit to vampira is a productive one for you and provides even the tiniest tidbit of information that will help you on your way. i also know what you mean about the joy of blood tests. everyone in the lab is starting to know me, which is good and bad.
you know, i have some other friends in the U.K. who complain about your national health care system, but as with most things, i am sure it has its pluses and minuses. i will try to avoid getting political here, but it is my opinion--and i know certainly not all would agree--that our health care system in the u.s. is in serious need of improvement. i don't think people understand how flawed it can be until they are facing mounting medical bills, and an actual worry about receiving a diagnosis for fear of not being covered in the future based on a pre-existing condition. when one is healthy, it's easy to think that things are fine the way they are. also, i used to have really excellent coverage through my husband's previous employer, so i never had to deal with any concerns about deductibles, maximum out-of-pocket expenses, etc. now it's a different story.
(see me stepping off of my soapbox...)
thank you all for the encouragement.i will be dam*ed if i am going to be deterred from my path towards finding out where lies the origin of the BEAST within. yes, i will take breaks and work on finishing my little hat--i'm ready to start decreasing now--but i am not going to be complacent. some days i feel so sick and scared, i am tempted to just give up, but i get myself back on my feet and keep plodding along.
with healing thoughts,
binx
hi wanna: i haven't gotten all the hard copies of my test results back yet, but the phlebotomist drew 17 different tubes. the ones i do know are: DNA antibody, "sed rate", another was for cardiolipin--all results were in the normal range. i also had lyme titer screening done at Quest labs, which from what i understand is not known for its accuracy. i am looking into pursuing testing through IgeneX in palo alto, ca, just to get a more accurate lyme result. and as far as the docs living in a bubble is concerned--i couldn't have stated it better myself. the neurologist casually states "come back and see me in 3 (or 4 or 6) weeks" after dropping a bomb about possibly having central nervous system vasculitis. that really blows my mind. how can he expect someone to get any rest when they are wondering about such an ominous disease?
additionally--i believe you are right about not solving this mystery before the end of the year. i pray for, but certainly do not expect, answers as we enter 2010. i cautiously reserve the hope to be pleasantly surprised though :-)
hello, stormyrenee: it sounds like you have been through the wringer as well, and i thank you for sharing your story with me, and you're right, we do have a lot of parallels in our symptoms. no one has addressed migraine with me since this all started in january when that was all the ER doc could come up with, and 4 docs are insisting i do not have MS, although i have not bought that conclusion at this point. actually, i haven't bought any conclusion except for the fact that the constellation of symptoms i have are not related to my cervical spine issues. i am due for another brain and c-spine MRI which i hope to have done before the dreaded end of the year, and i will inquire about the migraine possibility with my neuro. he is incredibly brilliant and very well meaning, but has a real attention span problem, so i often have to repeat things over and over again. seeing him is kind of like that movie "groundhog day".
needless to say, i wish you the very best in your pursuit of the holy grail, and look forward to keeping up with you during your journey.
maria: what tests is your neuro going to run next week? i hope your visit to vampira is a productive one for you and provides even the tiniest tidbit of information that will help you on your way. i also know what you mean about the joy of blood tests. everyone in the lab is starting to know me, which is good and bad.
you know, i have some other friends in the U.K. who complain about your national health care system, but as with most things, i am sure it has its pluses and minuses. i will try to avoid getting political here, but it is my opinion--and i know certainly not all would agree--that our health care system in the u.s. is in serious need of improvement. i don't think people understand how flawed it can be until they are facing mounting medical bills, and an actual worry about receiving a diagnosis for fear of not being covered in the future based on a pre-existing condition. when one is healthy, it's easy to think that things are fine the way they are. also, i used to have really excellent coverage through my husband's previous employer, so i never had to deal with any concerns about deductibles, maximum out-of-pocket expenses, etc. now it's a different story.
(see me stepping off of my soapbox...)
thank you all for the encouragement.i will be dam*ed if i am going to be deterred from my path towards finding out where lies the origin of the BEAST within. yes, i will take breaks and work on finishing my little hat--i'm ready to start decreasing now--but i am not going to be complacent. some days i feel so sick and scared, i am tempted to just give up, but i get myself back on my feet and keep plodding along.
with healing thoughts,
binx
Hi guys, well we moan about our National Health Service in the U.K, but even with its problems I think I would rather have our system.
I hadnt realised how your system worked to be honest what a nightmare.
Still I think we need a photograph soon Bin of a lovely baby hat LOL, just to show us you have had a TINY BREAK away from it all LOL.
Now then I have had a phone call from my doctor and they want a load of blood tests doing she got a letter from my neurologist who wants certain tests doing, so I am booked for Vampira next Wednesday. Oh Joy how I love being pricked and poked about.
Still waiting for my appointment for the MRI but dont expect that will be until January now.
Bin I agree with Stormy dont give up there will be something showing up its the law of averages LOL.
Big hugs to you all, and I hope you had a great day yesterday with your families.
xxx Maria
I hadnt realised how your system worked to be honest what a nightmare.
Still I think we need a photograph soon Bin of a lovely baby hat LOL, just to show us you have had a TINY BREAK away from it all LOL.
Now then I have had a phone call from my doctor and they want a load of blood tests doing she got a letter from my neurologist who wants certain tests doing, so I am booked for Vampira next Wednesday. Oh Joy how I love being pricked and poked about.
Still waiting for my appointment for the MRI but dont expect that will be until January now.
Bin I agree with Stormy dont give up there will be something showing up its the law of averages LOL.
Big hugs to you all, and I hope you had a great day yesterday with your families.
xxx Maria
Hi There!
It is sooo damn scary when you know somthings wrong but have no real answers. I know exactly how you feel. I have alot of the same symptoms as you.I have made my way thru a gauntlet of doctors.I had what seemed like every test imaginable.MRI's,blood tests and 24 hr urine catches and all were normal except ANA test 1:32 titer homogenous.I was also told that my initial brain MRI was normal when in fact it was not. After 6 months I finally made my way to a great neurologist who listened to me and did not tell me I was suffering from anxiety. He diagnosed me with Transverse Myelitis and Compilcated Migraines with aura. I had a new brain MRI that showed 15 brain lesions.The neuro said they had been there all along after reviewing my previous supposed normal brian mri. But now I am back in Limbo and facing a possible MS diagnosis.I no longer fit the criterian for TM but do not meet the criteria for MS.My neruo now refers to the TM as CIS (clinically isolated syndrom).
From my own experience with migraines your head and eye symptoms sound like mine. My migraines mimic stroke.I even have silent migraines(aura without actual headache).
There are rare migraine varients like basilar or hemapligic migraines that can cause all the symptoms your having.Migraines in general cause vascular changes in the blood vessels in the brain.Those changes would show up on mri like in your case.
Do not give up just because a doctor tells you theres nothing wrong.
I was told in the beginning that I was anorexic and suffering from panic attacks. So in less that a year I go form the panicy anorexic to possibly having MS. Believe in yourself.
Please Take care
It is sooo damn scary when you know somthings wrong but have no real answers. I know exactly how you feel. I have alot of the same symptoms as you.I have made my way thru a gauntlet of doctors.I had what seemed like every test imaginable.MRI's,blood tests and 24 hr urine catches and all were normal except ANA test 1:32 titer homogenous.I was also told that my initial brain MRI was normal when in fact it was not. After 6 months I finally made my way to a great neurologist who listened to me and did not tell me I was suffering from anxiety. He diagnosed me with Transverse Myelitis and Compilcated Migraines with aura. I had a new brain MRI that showed 15 brain lesions.The neuro said they had been there all along after reviewing my previous supposed normal brian mri. But now I am back in Limbo and facing a possible MS diagnosis.I no longer fit the criterian for TM but do not meet the criteria for MS.My neruo now refers to the TM as CIS (clinically isolated syndrom).
From my own experience with migraines your head and eye symptoms sound like mine. My migraines mimic stroke.I even have silent migraines(aura without actual headache).
There are rare migraine varients like basilar or hemapligic migraines that can cause all the symptoms your having.Migraines in general cause vascular changes in the blood vessels in the brain.Those changes would show up on mri like in your case.
Do not give up just because a doctor tells you theres nothing wrong.
I was told in the beginning that I was anorexic and suffering from panic attacks. So in less that a year I go form the panicy anorexic to possibly having MS. Believe in yourself.
Please Take care
Hi there...
Just reading through your post...curious what were all the tests the rheumatologist ran? How extensive were they?
Know what you mean about the end of the year/rolling into a new year with health care coverage...and a lessening of coverage as well. We are going from 90/10 to 80/20 and our deductible and out-of-pocket have increased as well. Due to the lack of care from one cardiologist and I have been force into a new year...HUGE dollars need to be spent in January...and all of this could have been avoided if ONE arrogant doctor did her job.
It's like some doctors live in a bubble or something?????? It's not bad enough that we are ill, but the the worry about money adds to the stress and does not help.
I hope you had a nice Thanksgiving. Please try to enjoy the Holidays. You probably don't want to hear this, but It is more than likely that you will not have an answer this year. Stay here for support. Keep pushing the doctors for answers though. It was through being proactive that I found answers, and continue to be proactive...the longer we do this the more we know what red flags to look for!
Have a great day...talk to you soon,
Wanna :o)
Just reading through your post...curious what were all the tests the rheumatologist ran? How extensive were they?
Know what you mean about the end of the year/rolling into a new year with health care coverage...and a lessening of coverage as well. We are going from 90/10 to 80/20 and our deductible and out-of-pocket have increased as well. Due to the lack of care from one cardiologist and I have been force into a new year...HUGE dollars need to be spent in January...and all of this could have been avoided if ONE arrogant doctor did her job.
It's like some doctors live in a bubble or something?????? It's not bad enough that we are ill, but the the worry about money adds to the stress and does not help.
I hope you had a nice Thanksgiving. Please try to enjoy the Holidays. You probably don't want to hear this, but It is more than likely that you will not have an answer this year. Stay here for support. Keep pushing the doctors for answers though. It was through being proactive that I found answers, and continue to be proactive...the longer we do this the more we know what red flags to look for!
Have a great day...talk to you soon,
Wanna :o)
thanks, kristin, for your note.
you're exactly right--i didn't want to have lupus, but i just wanted to finally give a name for this awful experience, and get on some sort of path toward making myself feel better. i am beyond ready to try to regain some semblance of my previous life.
we did have a nice thanksgiving--i hope the same held true for you.
best wishes,
binx
you're exactly right--i didn't want to have lupus, but i just wanted to finally give a name for this awful experience, and get on some sort of path toward making myself feel better. i am beyond ready to try to regain some semblance of my previous life.
we did have a nice thanksgiving--i hope the same held true for you.
best wishes,
binx
Hi, I can sympathize! I also was upset when my results came back negative for Lupus. Of course I don't want to have Lupus, but I just wanted an explanation for why I felt so bad. it's okay to just feel how you feel.
I hope you were able to enjoy your Thanksgiving.
Kristin
I hope you were able to enjoy your Thanksgiving.
Kristin
dear maria,
thank you for your very thoughtful and insightful reply. i know you are right, and distance is truly what i need from all of this at the moment. unfortunately, there are a few issues that are making that harder for me to do than i would like.
primarily, there is the issue of my health care coverage. as i am sure you are well aware, our private health care system in this country can cause problems for some people who don't have the best coverage--like me for example. my husband's employer contracts with a health care provider that has a large deductible, in addition to only covering 80% of costs, with a maximum annual out of pocket amount. due to everything that has happened to me, we have not only met the deductible, but also the maximum out of pocket for this year; however, that will be re-set as of 1/1/10.
needless to say, i am motivated to get as many tests and appointments that may be required under my belt during the next 34 days to save my family a substantial chunk of money.
i know it is just money, and my health and well being should take priority, but the financial aspect of this whole mess is really causing my little family a lot of problems, so i don't feel that completely shelving all of this for the holidays is an option for me. that doesn't mean i can't take small breaks here and there, and then maybe after the new year would be better to take a more extensive vacation from the BEAST as you so aptly labeled it.
again, i thank you for your wisdom and compassion. i am actually a knitter, and have a hat 3/4 of the way done for my friend's new baby. you are right--i should just pick it up and stop thinking about all of this baloney as much as i can.
the scene you describe with your pets is absolutely dreamy. we are sadly pet-less at the moment, with both our feline and canine friends having gone to their respective rewards in the past 2 years, but like i mentioned above, i am hoping to be well enough soon to care for new ones.
thank you again. you are wonderful.
binx
thank you for your very thoughtful and insightful reply. i know you are right, and distance is truly what i need from all of this at the moment. unfortunately, there are a few issues that are making that harder for me to do than i would like.
primarily, there is the issue of my health care coverage. as i am sure you are well aware, our private health care system in this country can cause problems for some people who don't have the best coverage--like me for example. my husband's employer contracts with a health care provider that has a large deductible, in addition to only covering 80% of costs, with a maximum annual out of pocket amount. due to everything that has happened to me, we have not only met the deductible, but also the maximum out of pocket for this year; however, that will be re-set as of 1/1/10.
needless to say, i am motivated to get as many tests and appointments that may be required under my belt during the next 34 days to save my family a substantial chunk of money.
i know it is just money, and my health and well being should take priority, but the financial aspect of this whole mess is really causing my little family a lot of problems, so i don't feel that completely shelving all of this for the holidays is an option for me. that doesn't mean i can't take small breaks here and there, and then maybe after the new year would be better to take a more extensive vacation from the BEAST as you so aptly labeled it.
again, i thank you for your wisdom and compassion. i am actually a knitter, and have a hat 3/4 of the way done for my friend's new baby. you are right--i should just pick it up and stop thinking about all of this baloney as much as i can.
the scene you describe with your pets is absolutely dreamy. we are sadly pet-less at the moment, with both our feline and canine friends having gone to their respective rewards in the past 2 years, but like i mentioned above, i am hoping to be well enough soon to care for new ones.
thank you again. you are wonderful.
binx
to bin and jib morning to you both and happy thanksgiving.
Well bin let me tell you I had a POSITIVE ANA for LUPUS and still did not get diagnosed with it LOL. Go figure. I was almost elated when the doctor told me it was POSITIVE I mean who wants lupus for gods sake.
Then I was told I would have to get a repeat in 6 weeks as a positive can be a negative and vice versus, so talk about confusing. The second one was negative. Lupus simply can not be diagnosed with blood test alone simple.
Now Dr Maria is going to prescribe you something to make you feel better. It does work if you are prepared to follow it ok.
So for now until after Christmas I think you need to have a completely free life away from illness.
I know you would be missed on the forum LOL BUT sometimes you just have to sit right back and recoup your energy. You are like me at the moment a dog chasing its tail going around and around and getting nowhere but feeling awful and not knowing why.
Take a few weeks and just do things with your family go out fresh air, walks play if you can with your daughter cuddle your hubby, get a babysitter in and go out with him. IF you have a hobby try to get back into it, IF not then think of something that wont tire you out, a bit of painting, cross stitch, writing even. Writing about your journey is huge therapy, and I supposed we all do that when we write on forums.
Sit back and really look at yourself and what you have today is a good day to do that.
Your family would be devistated if you were not there, THEY NEED YOU as much as you need them. Life is not gauranteed to be free of pain and health issues. I bet if the shoe was on the other foot and it was your hubby who was ill you would do everything in your power to make him well. Your hubby loves and needs you and so does your daughter.
What if you were told yesterday that you had Lupus, how would it have changed you? The symptoms would be the same the only difference is you would have known what you were fighting and perhaps then have some peace. The only difference today is you still dont know what you are fighting but the symptoms are the same.
Its just the not knowing that drives us mad. Round and round we go LOL.
Nothing will happen to you if you have a break away from thinking about it, you could even feel better as I am convinced the worry of worrying about what is wrong has a profound effect on our wellbeing.
So my prescription is go and get xmasy, enjoy 4 weeks free, enjoy YOU, your husband and your lovely daughter and go and get busy LOL.
Just remember to eat healthy, sleep and rest when you need it ok.
I feel for you more than you can ever believe I wish I could have a magic wand and make you all well to be honest.
Have a brilliant day today, the BEAST can wait for a few weeks you never know it might turn into a beautiful prince if you ignore it LOL.xxxxxx
IF after your break your symptoms have worsened or are still there then perhaps think about having a lumbur puncture but be warned the results could confuse you even more.
BIG HUGS from Maria sat in bed with the rain pelting down on my windows and I am lovely and snug thinking should I get up LOL. I wish you could see me. I am laying in my bed, and next to me is Lucy my jack Russell asleep, then Biscuit my big lazy female ginger cat, then towards the end of the bed is cookie my fluffy rag doll ginger tom WHAT A LIFE LOL.
xxxxxx
Well bin let me tell you I had a POSITIVE ANA for LUPUS and still did not get diagnosed with it LOL. Go figure. I was almost elated when the doctor told me it was POSITIVE I mean who wants lupus for gods sake.
Then I was told I would have to get a repeat in 6 weeks as a positive can be a negative and vice versus, so talk about confusing. The second one was negative. Lupus simply can not be diagnosed with blood test alone simple.
Now Dr Maria is going to prescribe you something to make you feel better. It does work if you are prepared to follow it ok.
So for now until after Christmas I think you need to have a completely free life away from illness.
I know you would be missed on the forum LOL BUT sometimes you just have to sit right back and recoup your energy. You are like me at the moment a dog chasing its tail going around and around and getting nowhere but feeling awful and not knowing why.
Take a few weeks and just do things with your family go out fresh air, walks play if you can with your daughter cuddle your hubby, get a babysitter in and go out with him. IF you have a hobby try to get back into it, IF not then think of something that wont tire you out, a bit of painting, cross stitch, writing even. Writing about your journey is huge therapy, and I supposed we all do that when we write on forums.
Sit back and really look at yourself and what you have today is a good day to do that.
Your family would be devistated if you were not there, THEY NEED YOU as much as you need them. Life is not gauranteed to be free of pain and health issues. I bet if the shoe was on the other foot and it was your hubby who was ill you would do everything in your power to make him well. Your hubby loves and needs you and so does your daughter.
What if you were told yesterday that you had Lupus, how would it have changed you? The symptoms would be the same the only difference is you would have known what you were fighting and perhaps then have some peace. The only difference today is you still dont know what you are fighting but the symptoms are the same.
Its just the not knowing that drives us mad. Round and round we go LOL.
Nothing will happen to you if you have a break away from thinking about it, you could even feel better as I am convinced the worry of worrying about what is wrong has a profound effect on our wellbeing.
So my prescription is go and get xmasy, enjoy 4 weeks free, enjoy YOU, your husband and your lovely daughter and go and get busy LOL.
Just remember to eat healthy, sleep and rest when you need it ok.
I feel for you more than you can ever believe I wish I could have a magic wand and make you all well to be honest.
Have a brilliant day today, the BEAST can wait for a few weeks you never know it might turn into a beautiful prince if you ignore it LOL.xxxxxx
IF after your break your symptoms have worsened or are still there then perhaps think about having a lumbur puncture but be warned the results could confuse you even more.
BIG HUGS from Maria sat in bed with the rain pelting down on my windows and I am lovely and snug thinking should I get up LOL. I wish you could see me. I am laying in my bed, and next to me is Lucy my jack Russell asleep, then Biscuit my big lazy female ginger cat, then towards the end of the bed is cookie my fluffy rag doll ginger tom WHAT A LIFE LOL.
xxxxxx
hi again,
thank you for filling me in on the details of your own travels through neurological limboland. i am so sorry you are having such a difficult time of it, and i will also send good thoughts your way for a positive outcome very soon.
i have had some of the same symptoms you describe--in particular the left-sided weakness, and numbness and tingling, but my MRIs have all been "normal" for MS, so my doctors have stopped considering it as a possibility. i haven't though.
i can completely understand the level of frustration you must be feeling about the change in your appointment. you get yourself mentally prepared for a particular date and the weeks crawl past--then they push it back another two weeks! uggghhh!
i can understand how easy it is to spoil your dog. i had a bernese mtn dog that slept in my bed before my husband and i moved in together. i hope to have another canine friend when my daughter gets a little older and when i am strong enough to take proper care of one again.
thanks for your good thoughts.
binx
thank you for filling me in on the details of your own travels through neurological limboland. i am so sorry you are having such a difficult time of it, and i will also send good thoughts your way for a positive outcome very soon.
i have had some of the same symptoms you describe--in particular the left-sided weakness, and numbness and tingling, but my MRIs have all been "normal" for MS, so my doctors have stopped considering it as a possibility. i haven't though.
i can completely understand the level of frustration you must be feeling about the change in your appointment. you get yourself mentally prepared for a particular date and the weeks crawl past--then they push it back another two weeks! uggghhh!
i can understand how easy it is to spoil your dog. i had a bernese mtn dog that slept in my bed before my husband and i moved in together. i hope to have another canine friend when my daughter gets a little older and when i am strong enough to take proper care of one again.
thanks for your good thoughts.
binx
Hi,
I did just read your into. On my goodness, my apologies for not reading it sooner. My toughts are with you...I can imagine what you're experiencing. Although I have not experienced ALL the SAME symptoms as you, I can relate to some and as I said I know your feelings of the frustration and confusion. Sometimes I feel so sick and tired of feeling so "sick and tired". It has taken a toll on me and my hubby too... I don't have children but my social and personal life has been effected. I am not the same get up and go girl...I am so tired all the time, amongst everything else I feel. It's tough to try to wait from appt. to appt for explanations and then you finally get to the doctor's (for me anyway) and then I leave there twice as confused and still no answers as when I got there..
My last MRI in July 2009 showed 20 lesions with possible demyelination..(he never told me that though, (I got the results on my own) and the one he did the first time I say him in 2006 showed lesions as well which indicated that MS should be included in the differential..(he never told me that either) so here I am. I also suffer from migraines but have recently been experiencing blurred vision and cognitive issues which was the reason for MRI in 2009. Since Aug. I have had numbing and tingling in left side of body, spasms in left calf and foot, weakness all over and difficulty climbing satirs, I have a hard time bending my leg (knee) climbing, fatigue, itchy and burning sensation over body (lasted about 2 days) and little shocks that happen down my leg and arm off and on...
I was supposed to have a follow up on 11/30/09 (Monday) but he called to change it because he will be out..Now it's the 15th of Dec.
Waiting game.
Yes that's my poochie..She's my lovebug...She actually gets her own little Thanksgivng plate..plus a lick or two off Mom's plate when dinner is done....(spoiled rotten)
Well, I don't know if I have helped any but if anything, you can be sure you are not alone! I will keep you in my thoughts..and hope that things will get better....
Be Well
JibJen
I did just read your into. On my goodness, my apologies for not reading it sooner. My toughts are with you...I can imagine what you're experiencing. Although I have not experienced ALL the SAME symptoms as you, I can relate to some and as I said I know your feelings of the frustration and confusion. Sometimes I feel so sick and tired of feeling so "sick and tired". It has taken a toll on me and my hubby too... I don't have children but my social and personal life has been effected. I am not the same get up and go girl...I am so tired all the time, amongst everything else I feel. It's tough to try to wait from appt. to appt for explanations and then you finally get to the doctor's (for me anyway) and then I leave there twice as confused and still no answers as when I got there..
My last MRI in July 2009 showed 20 lesions with possible demyelination..(he never told me that though, (I got the results on my own) and the one he did the first time I say him in 2006 showed lesions as well which indicated that MS should be included in the differential..(he never told me that either) so here I am. I also suffer from migraines but have recently been experiencing blurred vision and cognitive issues which was the reason for MRI in 2009. Since Aug. I have had numbing and tingling in left side of body, spasms in left calf and foot, weakness all over and difficulty climbing satirs, I have a hard time bending my leg (knee) climbing, fatigue, itchy and burning sensation over body (lasted about 2 days) and little shocks that happen down my leg and arm off and on...
I was supposed to have a follow up on 11/30/09 (Monday) but he called to change it because he will be out..Now it's the 15th of Dec.
Waiting game.
Yes that's my poochie..She's my lovebug...She actually gets her own little Thanksgivng plate..plus a lick or two off Mom's plate when dinner is done....(spoiled rotten)
Well, I don't know if I have helped any but if anything, you can be sure you are not alone! I will keep you in my thoughts..and hope that things will get better....
Be Well
JibJen
thank you for your response, jibjen. i hope you have a happy thanksgiving as well. if you're interested in reading more details about my situation, i posted in the "introduce yourself here" board on 11/15/09.
i do have a very supportive family, and i am really trying to keep my perspective for their sakes, as well as my own, since my feelings and mood have such a profound effect on them as well. as i am sure you can understand, this hasn't been easy for any of us.
it is incredibly helpful to have this forum available to us since being a resident of limboland can be so isolating. i sincerely appreciate your reaching out, as well as the others who have communicated with me since joining this board.
happy thanksgiving to you and yours. i saw the photos of your dog and she is a cutie pie! does she get to lick the plates after dinner?
best wishes,
binx
i do have a very supportive family, and i am really trying to keep my perspective for their sakes, as well as my own, since my feelings and mood have such a profound effect on them as well. as i am sure you can understand, this hasn't been easy for any of us.
it is incredibly helpful to have this forum available to us since being a resident of limboland can be so isolating. i sincerely appreciate your reaching out, as well as the others who have communicated with me since joining this board.
happy thanksgiving to you and yours. i saw the photos of your dog and she is a cutie pie! does she get to lick the plates after dinner?
best wishes,
binx
Hello,
I'm JibJen. I was just reading your post. I am in limbo and am not diagnosed with anything (yet) but can understand your frustration to a degree. I have been going back and forth to my neurologist and other doctors for tests wihtout any clear understanding of what is going on with me since I have been experiencing such weird symptoms for months now and have not any clear answers. I don't know what test will be next or why...It can be trying..
I don't know the details of your situation but I understand how it can be going through tests and the not know what is next ...especially while caring for a famly and trying to live your life.
I am from the US too...All I can say is hang in there..this forum is great..the members have so much to share and have helped me get through some times of cunfusion and frustration....
You sound like you have a great, loving and supportive family and that is a blessing! Enjoy your Thanksgiving! Try to take the day off from the confusion if you can. I know it is easier said than done.
Be Well and Have a Happy Thanksgiving!
JibJen
I'm JibJen. I was just reading your post. I am in limbo and am not diagnosed with anything (yet) but can understand your frustration to a degree. I have been going back and forth to my neurologist and other doctors for tests wihtout any clear understanding of what is going on with me since I have been experiencing such weird symptoms for months now and have not any clear answers. I don't know what test will be next or why...It can be trying..
I don't know the details of your situation but I understand how it can be going through tests and the not know what is next ...especially while caring for a famly and trying to live your life.
I am from the US too...All I can say is hang in there..this forum is great..the members have so much to share and have helped me get through some times of cunfusion and frustration....
You sound like you have a great, loving and supportive family and that is a blessing! Enjoy your Thanksgiving! Try to take the day off from the confusion if you can. I know it is easier said than done.
Be Well and Have a Happy Thanksgiving!
JibJen
You must join this user group in order to participate in this discussion.
You are reading content posted in the SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Group
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
