I'm not usually one to ask but I need some dust!

[Asscherhalo_lover]

Well I got home yesterday at about 4pm. The LP had made me horribly sick, really bad headaches and virtually non-stop vomiting and nausea for three days. I finally had my last MRI on the 23rd and then had a blood patch for the leaking LP on the 24th and was able to go home. Even though my LP was normal opening pressure some of the neurology Drs still think it might be psuedo tumor just because my vision improved after the LP. I also had some off results with my bloodwork though, specifically high ANA numbers and WBC so I've been referred to rheumatology for a possible autoimmune problem as well. Basically everything is still going to be more testing until we have some kind of explanation but until then the real frights of a brain tumor, aneurysm, or stroke have been crossed off the list so all is well.

It's odd, those 6 days and 5 nights in the hospital feel like they never happened now that they're over. It was almost like an out of body experience for me, like it happened to someone else and I was just watching. I'M relieved to have it all behind me and hope to find some solid answers and treatment going forward. Thank you all for the dust and thoughts, it really helped me when I was ill and mostly alone to know that you were all rooting for me. PS is a wonderful place!

Merry Christmas to all of those who celebrate and Happy Newton's Birthday as well!

Asscher, I can completely sympathize with everything you've gone through! I also had a LP and was very sick from it. I spent two weeks in the hospital because of the awful side effects. I, too, have a very high ANA. The process of getting a diagnosis for anything autoimmune related can be very long and very frustrating. Please hang in there! I'm glad that you got cleared for some of the other things they may have thought it was. Was everything normal with the brain MRI?

Thanks for replying with your experience, yes all of my MRIs have been totally normal as well as my LP except for blood but they figured they just hit a blood vessel so they were not concerned. I suffered from the LP side effects for 4 days until they did the blood patch, I cannot imagine 2 weeks! Did you ever get a diagnosis? Thanks for sharing.

 

[Autumnovember]

Well I got home yesterday at about 4pm. The LP had made me horribly sick, really bad headaches and virtually non-stop vomiting and nausea for three days. I finally had my last MRI on the 23rd and then had a blood patch for the leaking LP on the 24th and was able to go home. Even though my LP was normal opening pressure some of the neurology Drs still think it might be psuedo tumor just because my vision improved after the LP. I also had some off results with my bloodwork though, specifically high ANA numbers and WBC so I've been referred to rheumatology for a possible autoimmune problem as well. Basically everything is still going to be more testing until we have some kind of explanation but until then the real frights of a brain tumor, aneurysm, or stroke have been crossed off the list so all is well.

It's odd, those 6 days and 5 nights in the hospital feel like they never happened now that they're over. It was almost like an out of body experience for me, like it happened to someone else and I was just watching. I'M relieved to have it all behind me and hope to find some solid answers and treatment going forward. Thank you all for the dust and thoughts, it really helped me when I was ill and mostly alone to know that you were all rooting for me. PS is a wonderful place!

Merry Christmas to all of those who celebrate and Happy Newton's Birthday as well!

Asscher, I can completely sympathize with everything you've gone through! I also had a LP and was very sick from it. I spent two weeks in the hospital because of the awful side effects. I, too, have a very high ANA. The process of getting a diagnosis for anything autoimmune related can be very long and very frustrating. Please hang in there! I'm glad that you got cleared for some of the other things they may have thought it was. Was everything normal with the brain MRI?

Thanks for replying with your experience, yes all of my MRIs have been totally normal as well as my LP except for blood but they figured they just hit a blood vessel so they were not concerned. I suffered from the LP side effects for 4 days until they did the blood patch, I cannot imagine 2 weeks! Did you ever get a diagnosis? Thanks for sharing.

Oh good, I'm so glad both came out normal!! Mine didn't After 3 months I was diagnosed with multiple sclerosis. They had been debating between MS and Lupus. For a long time they thought I had both but we finally ruled lupus out completely about 5 months ago.

 

[ksinger]

Well I got home yesterday at about 4pm. The LP had made me horribly sick, really bad headaches and virtually non-stop vomiting and nausea for three days. I finally had my last MRI on the 23rd and then had a blood patch for the leaking LP on the 24th and was able to go home. Even though my LP was normal opening pressure some of the neurology Drs still think it might be psuedo tumor just because my vision improved after the LP. I also had some off results with my bloodwork though, specifically high ANA numbers and WBC so I've been referred to rheumatology for a possible autoimmune problem as well. Basically everything is still going to be more testing until we have some kind of explanation but until then the real frights of a brain tumor, aneurysm, or stroke have been crossed off the list so all is well.

It's odd, those 6 days and 5 nights in the hospital feel like they never happened now that they're over. It was almost like an out of body experience for me, like it happened to someone else and I was just watching. I'M relieved to have it all behind me and hope to find some solid answers and treatment going forward. Thank you all for the dust and thoughts, it really helped me when I was ill and mostly alone to know that you were all rooting for me. PS is a wonderful place!

Merry Christmas to all of those who celebrate and Happy Newton's Birthday as well!

Asscher, I can completely sympathize with everything you've gone through! I also had a LP and was very sick from it. I spent two weeks in the hospital because of the awful side effects. I, too, have a very high ANA. The process of getting a diagnosis for anything autoimmune related can be very long and very frustrating. Please hang in there! I'm glad that you got cleared for some of the other things they may have thought it was. Was everything normal with the brain MRI?

Thanks for replying with your experience, yes all of my MRIs have been totally normal as well as my LP except for blood but they figured they just hit a blood vessel so they were not concerned. I suffered from the LP side effects for 4 days until they did the blood patch, I cannot imagine 2 weeks! Did you ever get a diagnosis? Thanks for sharing.

Oh good, I'm so glad both came out normal!! Mine didn't After 3 months I was diagnosed with multiple sclerosis. They had been debating between MS and Lupus. For a long time they thought I had both but we finally ruled lupus out completely about 5 months ago.

I've just gotten into this thread, so yes Asscherhalo_lover, it is good that both tests are normal, although I have questions as to what exactly they were looking for in MRIs and LP. As we know, the MRI really requires contrast, and the LP requires a concurrent blood sample to compare to if you are looking to run the test that looks for unmatched O-bands.

And yes, I sound like I may actually know what I'm talking about because like you Autumnovember, unfortunately, I know what I'm talking about. It only took them slightly over 2 months (which is blazing speed in the world of MS diagnoses) to diagnose me with MS: 11 blood tests, 4 MRIs, and an O-band-loaded LP (NOT a partridge in a pear tree, which I would have much preferred!) which (in order) ruled out just about everything else, and netted 3 classic MS lesions, 8 unmatched o-bands, and cast my neurological history, that I had no idea had any connection to anything except my bad back, in a new light. And then the latest of the 4 MRIs, which showed 2 new lesions last week. I never wanted to be in this crappy club, and quite frankly am annoyed, because I'm too stinkin' OLD for this. Old broads like me are supposed to be immune to this, dammit! (Or so I tell myself when I'm being particularly sour about circumstances: I hate it when I "beat the odds".)

And Asscherhalo, I'm so sorry you had such a rotten time with the LP. They are just so NOT fun, having any more pain and stress than the test itself, is just the utter pits. My deepest sympathies, and I'm glad you're feeling better and sorry you're in diagnosis limbo. I know how that feels, even though my time to a diagnosis was relatively short. It felt like forever, and was very stressful. I hope the holidays are banishing that strain for a while at least. Best of luck!!

 

[Asscherhalo_lover]

Thank you both ladies for sharing your experience and I'm sorry for your troubles, I hope you are both able to manage well and have good care available to you. It sounds like you are both well educated and able to advocate for yourselves which I'm learning is the most important thing anyone facing anything like this can do. I had one full brain MRI with contrast that I was told was "clean" and a second focusing on my orbital and optic nerve since I had blurred vision also with contrast which showed as "clean". The LP was done because the original suspicion for my issues was psuedotumor cerebri, this was ruled out BC of my "normal" opening pressure during the LP. I'm not sure about the other things you mentioned but I'll be sure to be thorough with my doctors in my follow up appointments. If you have any suggestions for specific questions I should ask my doctors please feel free to leave them here, thank you again for your help!

 

[Autumnovember]

Well I got home yesterday at about 4pm. The LP had made me horribly sick, really bad headaches and virtually non-stop vomiting and nausea for three days. I finally had my last MRI on the 23rd and then had a blood patch for the leaking LP on the 24th and was able to go home. Even though my LP was normal opening pressure some of the neurology Drs still think it might be psuedo tumor just because my vision improved after the LP. I also had some off results with my bloodwork though, specifically high ANA numbers and WBC so I've been referred to rheumatology for a possible autoimmune problem as well. Basically everything is still going to be more testing until we have some kind of explanation but until then the real frights of a brain tumor, aneurysm, or stroke have been crossed off the list so all is well.

It's odd, those 6 days and 5 nights in the hospital feel like they never happened now that they're over. It was almost like an out of body experience for me, like it happened to someone else and I was just watching. I'M relieved to have it all behind me and hope to find some solid answers and treatment going forward. Thank you all for the dust and thoughts, it really helped me when I was ill and mostly alone to know that you were all rooting for me. PS is a wonderful place!

Merry Christmas to all of those who celebrate and Happy Newton's Birthday as well!

Asscher, I can completely sympathize with everything you've gone through! I also had a LP and was very sick from it. I spent two weeks in the hospital because of the awful side effects. I, too, have a very high ANA. The process of getting a diagnosis for anything autoimmune related can be very long and very frustrating. Please hang in there! I'm glad that you got cleared for some of the other things they may have thought it was. Was everything normal with the brain MRI?

Thanks for replying with your experience, yes all of my MRIs have been totally normal as well as my LP except for blood but they figured they just hit a blood vessel so they were not concerned. I suffered from the LP side effects for 4 days until they did the blood patch, I cannot imagine 2 weeks! Did you ever get a diagnosis? Thanks for sharing.

Oh good, I'm so glad both came out normal!! Mine didn't After 3 months I was diagnosed with multiple sclerosis. They had been debating between MS and Lupus. For a long time they thought I had both but we finally ruled lupus out completely about 5 months ago.

I've just gotten into this thread, so yes Asscherhalo_lover, it is good that both tests are normal, although I have questions as to what exactly they were looking for in MRIs and LP. As we know, the MRI really requires contrast, and the LP requires a concurrent blood sample to compare to if you are looking to run the test that looks for unmatched O-bands.

And yes, I sound like I may actually know what I'm talking about because like you Autumnovember, unfortunately, I know what I'm talking about. It only took them slightly over 2 months (which is blazing speed in the world of MS diagnoses) to diagnose me with MS: 11 blood tests, 4 MRIs, and an O-band-loaded LP (NOT a partridge in a pear tree, which I would have much preferred!) which (in order) ruled out just about everything else, and netted 3 classic MS lesions, 8 unmatched o-bands, and cast my neurological history, that I had no idea had any connection to anything except my bad back, in a new light. And then the latest of the 4 MRIs, which showed 2 new lesions last week. I never wanted to be in this crappy club, and quite frankly am annoyed, because I'm too stinkin' OLD for this. Old broads like me are supposed to be immune to this, dammit! (Or so I tell myself when I'm being particularly sour about circumstances: I hate it when I "beat the odds".)

And Asscherhalo, I'm so sorry you had such a rotten time with the LP. They are just so NOT fun, having any more pain and stress than the test itself, is just the utter pits. My deepest sympathies, and I'm glad you're feeling better and sorry you're in diagnosis limbo. I know how that feels, even though my time to a diagnosis was relatively short. It felt like forever, and was very stressful. I hope the holidays are banishing that strain for a while at least. Best of luck!!

Hey, ya know what? It is so comforting to know I have someone here to connect with on a deeper level. Thank you so much for sharing. Woman, I am way TOO young for this kinda stuff though! But ya know, sometimes I am thankful because the entire process of diagnosis and then management has truly changed my perspective on life and what's important. I am forever grateful. I hope your MS has been manageable. It's truly nice to know someone on here understands the process asscher, no matter what the outcome is, we are definitely here to listen, always.

 

[ksinger]

Well I got home yesterday at about 4pm. The LP had made me horribly sick, really bad headaches and virtually non-stop vomiting and nausea for three days. I finally had my last MRI on the 23rd and then had a blood patch for the leaking LP on the 24th and was able to go home. Even though my LP was normal opening pressure some of the neurology Drs still think it might be psuedo tumor just because my vision improved after the LP. I also had some off results with my bloodwork though, specifically high ANA numbers and WBC so I've been referred to rheumatology for a possible autoimmune problem as well. Basically everything is still going to be more testing until we have some kind of explanation but until then the real frights of a brain tumor, aneurysm, or stroke have been crossed off the list so all is well.

It's odd, those 6 days and 5 nights in the hospital feel like they never happened now that they're over. It was almost like an out of body experience for me, like it happened to someone else and I was just watching. I'M relieved to have it all behind me and hope to find some solid answers and treatment going forward. Thank you all for the dust and thoughts, it really helped me when I was ill and mostly alone to know that you were all rooting for me. PS is a wonderful place!

Merry Christmas to all of those who celebrate and Happy Newton's Birthday as well!

Asscher, I can completely sympathize with everything you've gone through! I also had a LP and was very sick from it. I spent two weeks in the hospital because of the awful side effects. I, too, have a very high ANA. The process of getting a diagnosis for anything autoimmune related can be very long and very frustrating. Please hang in there! I'm glad that you got cleared for some of the other things they may have thought it was. Was everything normal with the brain MRI?

Thanks for replying with your experience, yes all of my MRIs have been totally normal as well as my LP except for blood but they figured they just hit a blood vessel so they were not concerned. I suffered from the LP side effects for 4 days until they did the blood patch, I cannot imagine 2 weeks! Did you ever get a diagnosis? Thanks for sharing.

Oh good, I'm so glad both came out normal!! Mine didn't After 3 months I was diagnosed with multiple sclerosis. They had been debating between MS and Lupus. For a long time they thought I had both but we finally ruled lupus out completely about 5 months ago.

I've just gotten into this thread, so yes Asscherhalo_lover, it is good that both tests are normal, although I have questions as to what exactly they were looking for in MRIs and LP. As we know, the MRI really requires contrast, and the LP requires a concurrent blood sample to compare to if you are looking to run the test that looks for unmatched O-bands.

And yes, I sound like I may actually know what I'm talking about because like you Autumnovember, unfortunately, I know what I'm talking about. It only took them slightly over 2 months (which is blazing speed in the world of MS diagnoses) to diagnose me with MS: 11 blood tests, 4 MRIs, and an O-band-loaded LP (NOT a partridge in a pear tree, which I would have much preferred!) which (in order) ruled out just about everything else, and netted 3 classic MS lesions, 8 unmatched o-bands, and cast my neurological history, that I had no idea had any connection to anything except my bad back, in a new light. And then the latest of the 4 MRIs, which showed 2 new lesions last week. I never wanted to be in this crappy club, and quite frankly am annoyed, because I'm too stinkin' OLD for this. Old broads like me are supposed to be immune to this, dammit! (Or so I tell myself when I'm being particularly sour about circumstances: I hate it when I "beat the odds".)

And Asscherhalo, I'm so sorry you had such a rotten time with the LP. They are just so NOT fun, having any more pain and stress than the test itself, is just the utter pits. My deepest sympathies, and I'm glad you're feeling better and sorry you're in diagnosis limbo. I know how that feels, even though my time to a diagnosis was relatively short. It felt like forever, and was very stressful. I hope the holidays are banishing that strain for a while at least. Best of luck!!

Hey, ya know what? It is so comforting to know I have someone here to connect with on a deeper level. Thank you so much for sharing. Woman, I am way TOO young for this kinda stuff though! But ya know, sometimes I am thankful because the entire process of diagnosis and then management has truly changed my perspective on life and what's important. I am forever grateful. I hope your MS has been manageable. It's truly nice to know someone on here understands the process asscher, no matter what the outcome is, we are definitely here to listen, always.

Autumnovember - at 52 I was already deep in the process of having my perspective changed just due to age, but it has undergone another shift with this diagnosis, it's true. I don't expect to get anything like a 15 year hiatus, since late onset (which I am considered) generally progresses faster, turns into SP faster. I don't see me working until age 60, let alone beyond. I will very surprised if ends up being possible for me. A friend of mine my age was diagnosed in 2008, and she got 6 years more of working before the exhaustion and increasing impairment like tremor in her hands, finally made her cry "uncle". Fortunately, she had just shy of 30 years in at her job, so she could actually start taking her retirement. I won't be that lucky I fear. But hopefully I can swing at least 5 more years. It's a goal.

In retrospect, many of the MS symptoms have been with me for a while now - again, all of which could (and maybe still could) be attributed to something else. The doc said there was really no way to know how long I've really had this, since so many of my old symptoms are common to MS, meaning now I must reassess the last decade in light of this new circumstance. The most glaring thing I've had for a long time is significant fatigue. It's a bit MORE significant now and in the last few years has had a heat-related component.

I don't know how old you are, but I'm assuming quite a bit younger than me. And yes, you are WAY TOO young for such a situation. I do know a young woman who was diagnosed at 23 (I think she is now 2, and she has had more progression than anyone her age should have to deal with. I just weep inside to think of being her or your age, and having that diagnosis. I almost can't breath thinking of it. I'M pretty devastated as it is, but let's face it, I'm already pretty old - nearer retirement anyway, paid off house, past the agony of having to make choices of having or not having children, that sort of thing. I feel so much for you younger people. But again, as you said, it IS an opportunity to strip life of those silly things that don't matter in the end - all the petty crap we waste so much time fretting about. So, I hear ya, I really do.

If I can help or offer an ear for venting in any way, give a shout.

 

[ksinger]

Thank you both ladies for sharing your experience and I'm sorry for your troubles, I hope you are both able to manage well and have good care available to you. It sounds like you are both well educated and able to advocate for yourselves which I'm learning is the most important thing anyone facing anything like this can do. I had one full brain MRI with contrast that I was told was "clean" and a second focusing on my orbital and optic nerve since I had blurred vision also with contrast which showed as "clean". The LP was done because the original suspicion for my issues was psuedotumor cerebri, this was ruled out BC of my "normal" opening pressure during the LP. I'm not sure about the other things you mentioned but I'll be sure to be thorough with my doctors in my follow up appointments. If you have any suggestions for specific questions I should ask my doctors please feel free to leave them here, thank you again for your help!

Since they have ruled out the pseudotumor cerebri, I would ask the where they are going from here? What do they have in mind now? I would ask them what tests they have done to make them not consider MS. With a couple of clean MRIs, I can see why, but I would wonder why they didn't (if they didn't) go ahead and just check the LP for O-bands ("oligoclonal bands") when they were in there, just to be thorough. However, I warn you, if they didn't do it at the time, it's too late now without another LP, and I suspect you want another one of THOSE not a all! If both of those tests (MRI and LP) came back negative, then a diagnosis of MS would indeed become much less likely. However, the thing to remember about an MS diagnosis, is that first and foremost it is generally a difficult diagnosis to make, and there is no one test that rules it in or out. There are usually only tests and a personal history that taken all together, suggest MS. It is very very often misdiagnosed as something else early on, sometimes even by neurologists, especially those who don't specialize in it, or who just haven't seen it very often. And sometimes not enough of the pieces are in place to make a definitive diagnosis, and they HAVE to refrain. At first everyone thought I'd had a stroke (very common with certain initial presentations) but I pretty quickly got shifted from a neuro specializing in stroke, and who really thought my symptoms were migraine related (except that I don't have the kind of migraine that might produce something like what I had AND my face and speech were not involved) when my MRI "found something", to one specializing in MS.

If they finally throw up their hands, or give you some diagnosis that just doesn't ring true to you, then the best advice I can give is keep a hawk-eye on yourself going forward. And go back over your own history and write stuff down as it occurs to you (you'd be amazed at stuff I was able to recall that I had just blown off at the time, that was significant in retrospect). Have you had any other eye episodes like what you have now, that resolved? Any strange symptoms of numbness anywhere, that bothered you and lasted for a few days, but then resolved, and that maybe you didn't go to the doctor for? Write it all down and keep it for future reference.

You said they did a lot of blood work - did they test your vitamin D levels? If they didn't, DEMAND ONE. NOW. And if you find you are deficient (numbers under 50), supplement with D3 until you are not any longer, and then keep it there (this requires periodic re-testing. Basically, this is good advice for anyone, but you'll have to ask for it most likely) Did they ask if you'd ever had symptomatic mono and if so, when, childhood or adulthood? Almost everyone has had mono, even those who think they have not. But whether it was as a child or as an adult, and whether it was symptomatic or not is important - increased risk is correlated with having had symptomatic mono as an adult. ( http://archneur.jamanetwork.com/article.aspx?articleid=793221 )

What is your ancestry? European? Do you live in a northern state now? And did you grow up in northern latitudes or southern? Basically what I'm doing here, is asking you to do an assessment of your risk factors. Please know however, none of the things I've mentioned above are deemed causative, because they don't know what causes MS, but all of them are strongly correlated with increased risk of MS: low vit D levels, infectious mono as an adult, latitude of where you grew up, and particular ethnic groups. And gender of course, can't forget gender. Women get it way more than men. (BTW - I'm not asking you to tell all here on PS, just mull over a few of these things, and if they ring any bells, take note and keep an eye open going forward)

I'm sorry if I'm coming across as some sort of zealot, but I came of age long before the internet, and wish now I'd had some sort of knowledge that would have allowed me to know these risk factors (I'm not sure they knew all this 20+ years ago tho) and to know neurological signs better and to attempt to reduce my risk of MS over a period of decades. So, regardless of what they ultimately find is happening with you, consider this a PSA for knowing your risks and being vigilant in reducing the the one you have control over, which is the vit D deficiency.

Again, best of luck in getting the correct diagnosis, which with a neurological issue can be a challenge for everyone involved. I have to say, I can see why some docs just have to become neurologists: the human brain is pretty fascinating, and still quite mysterious.

I do so hope that this will be resolved easily and soon for you!

 

[Asscherhalo_lover]

Thank you so much for the information and perspective! I am not one to back away from something like this, I tend to push forward until I find I am satisfied with what I find. I will be sure to research what you have listed here and I have been mulling over in my mind all of the things I have always written off about myself. From what I have researched it still seems more on the autoimmune side of things to me. I reread all of my hospital reports the other night and googled anything I needed clarification on. I do not see my vitamin D checked so I will ask about that. I do live in the North East of the US so vitamin D is a problem for many of us. This is the part of my report focusing on the autoimmune:

Rheumatology was consulted due to elevated CRP(4.4, ESR(47), and ANA of 1:80 with speckled pattern. Per rheumatology consult she had additional bloodwork drawn that will be followed up as an outpatient (ACE, Sjorgren's, B2, glycoprotein, DS DNA, Lupus panel, ENA, RH factor, C3, and C4).

I have my neuro follow up next Tuesday and rheum next Friday. Thank you all again for the dust and information.

 

[Autumnovember]

Well I got home yesterday at about 4pm. The LP had made me horribly sick, really bad headaches and virtually non-stop vomiting and nausea for three days. I finally had my last MRI on the 23rd and then had a blood patch for the leaking LP on the 24th and was able to go home. Even though my LP was normal opening pressure some of the neurology Drs still think it might be psuedo tumor just because my vision improved after the LP. I also had some off results with my bloodwork though, specifically high ANA numbers and WBC so I've been referred to rheumatology for a possible autoimmune problem as well. Basically everything is still going to be more testing until we have some kind of explanation but until then the real frights of a brain tumor, aneurysm, or stroke have been crossed off the list so all is well.

It's odd, those 6 days and 5 nights in the hospital feel like they never happened now that they're over. It was almost like an out of body experience for me, like it happened to someone else and I was just watching. I'M relieved to have it all behind me and hope to find some solid answers and treatment going forward. Thank you all for the dust and thoughts, it really helped me when I was ill and mostly alone to know that you were all rooting for me. PS is a wonderful place!

Merry Christmas to all of those who celebrate and Happy Newton's Birthday as well!

Asscher, I can completely sympathize with everything you've gone through! I also had a LP and was very sick from it. I spent two weeks in the hospital because of the awful side effects. I, too, have a very high ANA. The process of getting a diagnosis for anything autoimmune related can be very long and very frustrating. Please hang in there! I'm glad that you got cleared for some of the other things they may have thought it was. Was everything normal with the brain MRI?

Thanks for replying with your experience, yes all of my MRIs have been totally normal as well as my LP except for blood but they figured they just hit a blood vessel so they were not concerned. I suffered from the LP side effects for 4 days until they did the blood patch, I cannot imagine 2 weeks! Did you ever get a diagnosis? Thanks for sharing.

Oh good, I'm so glad both came out normal!! Mine didn't After 3 months I was diagnosed with multiple sclerosis. They had been debating between MS and Lupus. For a long time they thought I had both but we finally ruled lupus out completely about 5 months ago.

I've just gotten into this thread, so yes Asscherhalo_lover, it is good that both tests are normal, although I have questions as to what exactly they were looking for in MRIs and LP. As we know, the MRI really requires contrast, and the LP requires a concurrent blood sample to compare to if you are looking to run the test that looks for unmatched O-bands.

And yes, I sound like I may actually know what I'm talking about because like you Autumnovember, unfortunately, I know what I'm talking about. It only took them slightly over 2 months (which is blazing speed in the world of MS diagnoses) to diagnose me with MS: 11 blood tests, 4 MRIs, and an O-band-loaded LP (NOT a partridge in a pear tree, which I would have much preferred!) which (in order) ruled out just about everything else, and netted 3 classic MS lesions, 8 unmatched o-bands, and cast my neurological history, that I had no idea had any connection to anything except my bad back, in a new light. And then the latest of the 4 MRIs, which showed 2 new lesions last week. I never wanted to be in this crappy club, and quite frankly am annoyed, because I'm too stinkin' OLD for this. Old broads like me are supposed to be immune to this, dammit! (Or so I tell myself when I'm being particularly sour about circumstances: I hate it when I "beat the odds".)

And Asscherhalo, I'm so sorry you had such a rotten time with the LP. They are just so NOT fun, having any more pain and stress than the test itself, is just the utter pits. My deepest sympathies, and I'm glad you're feeling better and sorry you're in diagnosis limbo. I know how that feels, even though my time to a diagnosis was relatively short. It felt like forever, and was very stressful. I hope the holidays are banishing that strain for a while at least. Best of luck!!

Hey, ya know what? It is so comforting to know I have someone here to connect with on a deeper level. Thank you so much for sharing. Woman, I am way TOO young for this kinda stuff though! But ya know, sometimes I am thankful because the entire process of diagnosis and then management has truly changed my perspective on life and what's important. I am forever grateful. I hope your MS has been manageable. It's truly nice to know someone on here understands the process asscher, no matter what the outcome is, we are definitely here to listen, always.

Autumnovember - at 52 I was already deep in the process of having my perspective changed just due to age, but it has undergone another shift with this diagnosis, it's true. I don't expect to get anything like a 15 year hiatus, since late onset (which I am considered) generally progresses faster, turns into SP faster. I don't see me working until age 60, let alone beyond. I will very surprised if ends up being possible for me. A friend of mine my age was diagnosed in 2008, and she got 6 years more of working before the exhaustion and increasing impairment like tremor in her hands, finally made her cry "uncle". Fortunately, she had just shy of 30 years in at her job, so she could actually start taking her retirement. I won't be that lucky I fear. But hopefully I can swing at least 5 more years. It's a goal.

In retrospect, many of the MS symptoms have been with me for a while now - again, all of which could (and maybe still could) be attributed to something else. The doc said there was really no way to know how long I've really had this, since so many of my old symptoms are common to MS, meaning now I must reassess the last decade in light of this new circumstance. The most glaring thing I've had for a long time is significant fatigue. It's a bit MORE significant now and in the last few years has had a heat-related component.

I don't know how old you are, but I'm assuming quite a bit younger than me. And yes, you are WAY TOO young for such a situation. I do know a young woman who was diagnosed at 23 (I think she is now 2, and she has had more progression than anyone her age should have to deal with. I just weep inside to think of being her or your age, and having that diagnosis. I almost can't breath thinking of it. I'M pretty devastated as it is, but let's face it, I'm already pretty old - nearer retirement anyway, paid off house, past the agony of having to make choices of having or not having children, that sort of thing. I feel so much for you younger people. But again, as you said, it IS an opportunity to strip life of those silly things that don't matter in the end - all the petty crap we waste so much time fretting about. So, I hear ya, I really do.

If I can help or offer an ear for venting in any way, give a shout.

I read all the advice you have given asscher and it's way better worded than I would have been able to write!!

I have a lot of hope for anyone that's fighting this disease. I really do think that a cure will be found and I'm also thankful that we have better medication. I have relapsing remitting and I truly hope that I can live out the rest of my life being able to do the things I want to do. I want kids someday, I want to keep working, and I want to always be able to take care of my family. I was diagnosed two years ago and have had two relapses. Not bad ones but enough that I needed to go into the hospital for solumedrol infusions. I absolutely refuse to ever take oral prednisone. I'm friends with a few people on instagram that have really bad relapses and are also fighting some other serious diseases. It's scares the living crap out of me. I am absolutely horrified just thinking of not being able to walk someday. So my remedy is NOT to allow my mind to wonder into that direction. Unfortunately for me, I'm also now dealing with autoimmune hemolytic anemia which has now become more if a concern than the MS. I can deal with the MS, I have an incredible doctor from upenn! This autoimmune hemolytic anemia hasn't responded to oral or intravenous steroids. We're moving onto chemo next which will hopefully kill two birds with one stone. Are you on any kind of medication?

 

[ksinger]

I read all the advice you have given asscher and it's way better worded than I would have been able to write!!

I have a lot of hope for anyone that's fighting this disease. I really do think that a cure will be found and I'm also thankful that we have better medication. I have relapsing remitting and I truly hope that I can live out the rest of my life being able to do the things I want to do. I want kids someday, I want to keep working, and I want to always be able to take care of my family. I was diagnosed two years ago and have had two relapses. Not bad ones but enough that I needed to go into the hospital for solumedrol infusions. I absolutely refuse to ever take oral prednisone. I'm friends with a few people on instagram that have really bad relapses and are also fighting some other serious diseases. It's scares the living crap out of me. I am absolutely horrified just thinking of not being able to walk someday. So my remedy is NOT to allow my mind to wonder into that direction. Unfortunately for me, I'm also now dealing with autoimmune hemolytic anemia which has now become more if a concern than the MS. I can deal with the MS, I have an incredible doctor from upenn! This autoimmune hemolytic anemia hasn't responded to oral or intravenous steroids. We're moving onto chemo next which will hopefully kill two birds with one stone. Are you on any kind of medication?

Thank you Autumnovember, I hope it's good advice. I'm sure as heck no doc, but I have benefited a bunch from others' first-person accounts and tips on various fora, (and by reading a seemingly endless number of abstracts and studies on PubMed, etc) so if I can help anyone else like I was helped, I'm going to try.

I was only diagnosed in November, so I've JUST started Tecfidera a week ago. I'm back to normal for now, with a full recovery of all function that was affected by the first attack. It took almost a month to resolve fully though, and HAS left me with persistent dizzyness, feelings of weakness (I'm not actually weak, just FEEL limp), and getting exhausted easily and randomly. But all that is small potatoes compared to what I HAD, which was what I would call a small amount (ha! as if ANY amount is insignificant.) of intention tremor, and a loss of fine motor control in my right hand, and lack of balance and coordination in my right leg - I could barely walk without clutching a wall and could barely write and barely type, and I work in IT, so NOT typing is not much of an option. In that first two weeks my dishes and glassware took a massive hit, and I even ran my new car's passenger side-view mirror into a plastic trash bin in my neighborhood. It was NOT a happy time. Thing are better now. I hope they stay that way for a good long while.

I'm so sorry you're dealing with something else along with the MS. I hope they can get that anemia under control for you. And like you, I try not to dwell too much on tomorrow. I have no control over tomorrow, and fretting about it takes away from my living in the present. I know that is easier said than done, but when I find myself going down that rathole, I make a gentle effort to change the direction back to NOW. I talk to friends, I go window-shopping, or play with my dog. Dogs are great for making you be right here right NOW!

 

[Sunstorm]

I am sorry I missed this thread, I am also sending lots of healing vibes and dust your way! I do hope that you get an answer soon and it is one of the better possibilities. I too have a friend with pseudo, not a good thing but you can live with it for sure. MS , wow so sorry girls, AutumnNovember and KSinger, that is not an easy one to live with but you are right I too know someone who was diagnosed in his early twenties and it is much worse when you get it at a younger age. Please keep us posted about how things go, it is sad that the good people are always the ones going through such trials and tribulations but you will all prevail!

 

[Autumnovember]

I am sorry I missed this thread, I am also sending lots of healing vibes and dust your way! I do hope that you get an answer soon and it is one of the better possibilities. I too have a friend with pseudo, not a good thing but you can live with it for sure. MS , wow so sorry girls, AutumnNovember and KSinger, that is not an easy one to live with but you are right I too know someone who was diagnosed in his early twenties and it is much worse when you get it at a younger age. Please keep us posted about how things go, it is sad that the good people are always the ones going through such trials and tribulations but you will all prevail!

Just wanted to clarify, it truly depends on which type of MS you have. Age of diagnosis and how the disease progresses can be very different for each patient. Being diagnosed at an early age can sometimes be beneficial. Sometimes, the older you are at diagnosis, the quicker it can progress. <3

 

[Monnyjay]

Passing on good wishes to you AHL

 

[Asscherhalo_lover]

Saw neurology today and I'm officially passed off to rheumatology. My Dr. also advised me to make an appointment a few months ahead for a neuro ophthalmologist if this doesn't get figured out. I'm also going on Friday to get glasses for driving in the meantime. Hopefully this will eventually get figured out!

Thank you all again for the dust!

 

[ksinger]

Saw neurology today and I'm officially passed off to rheumatology. My Dr. also advised me to make an appointment a few months ahead for a neuro ophthalmologist if this doesn't get figured out. I'm also going on Friday to get glasses for driving in the meantime. Hopefully this will eventually get figured out!

Thank you all again for the dust!

Hey, just wanted you to know that I'll be holding a good thought for you. I hope they can get your issue sorted out quickly. It always seems like they never do get it done to suit OUR time schedules, but I hope it for you anyway!

 

[Asscherhalo_lover]

Well I saw rheum today and they saw "no red flags" in any of my additional bloodwork. They did more blood work which they'll call me for in about two weeks. I went today to get glasses. Even with the glasses my right side vision is still blurry so I'm going back at some point tomorrow, I'm not sure what they can do though. Ugh I hate this.

 

[Autumnovember]

Well I saw rheum today and they saw "no red flags" in any of my additional bloodwork. They did more blood work which they'll call me for in about two weeks. I went today to get glasses. Even with the glasses my right side vision is still blurry so I'm going back at some point tomorrow, I'm not sure what they can do though. Ugh I hate this.

Hmm... you know, this might be one of those things you just need to keep a close eye on. I feel like a lot of doctors that see a positive ANA freak out and assume something DEFINITELY has to be wrong. I disagree, completely. Just keep watch on your body. Keep us posted!

 

[GlamMosher]

Hi Asscherhalo_lover,
I don't have any advice but wanted to say I wish you all the best in your quest to find out what is wrong.
I have an auto immune disease in my eye (one only for now, and is quiet at present) but is totally different and not nearly as serious as what you girls have been going through. Mine is uveitis which can be bad if not treated but I see a fabulous ophthalmologist who specialises in inflammatory eye diseases. I am presuming this has been discounted for you as an ophthalmologist would pick it up pretty easily.
I hope you get some answers soon!

Glam

 

[Asscherhalo_lover]

Thank you both and yes I am basically just on high alert now for any changes in my body at all. I am just going to focus on my health in general and do what I can do to improve it all around. If I don't adjust to my glasses by the end of the weekend I'll go back to the shop on Monday and see if there's anything they can do. Thanks again and best wishes to you all!