Aa
Introduce yourself here.
Hi everyone you can introduce yourself on this thread.
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
Hi, I'm new here. And just getting settled into limboland as well. It looks like I'm going to be here awhile though since none of my doctors know what to do with me.
Back in October when my only symptom was severe diplopia and some squeezing around my chest I had an MRI and an EMG on the arm, both of which were fine.
A month later though, instead of it going away as they told me it would likely do, I started having other symptoms (eye pain, lost vision in one eye and then had sustained loss of color vision, my legs were shaking so bad I was falling down when I tried to stand up, tingling fingers on left hand and in big toes, muscle twitching). My neurologist brushed everything off as stress at first, but when another doc (internist) gave me prednisone to help me get some strength back and maybe stop shaking, my double vision started clearing up. Everyone kept saying it was impossible, but my neurologist decided then that I had ocular myasthenia and now it was just all the other symptoms to be impossible. She's pushing me to have a full trans-sternum thymectomy. (yikes!) I have to say that she did all of the tests for myasthenia and ALL of them came back negative and add to that the fact that the meds for it caused only problems with no benefit whatsoever. All of the other doctors I've seen think that she's insanely rash and way off base on the myasthenia/thymectomy idea.
Around the end of November I started having weird electical-feeling shocks running down one of my legs to the knee (my new doc has identified them as L'hermittes) and the squeezing around the chest got worse. My left hand was slow and had limited sensation (mostly just to burn and tingle) for about 3 weeks in January, but now it's almost back to normal. Just those original fingers to keep on tingling a bit at the tips. My old neuro kept telling me it was because I was right handed. (!?) I'm still on Prednisone (going on 3 months now) and my diplopia is still gone, but my eyes still occasionally hurt.
At the end of January, when my symptoms seemed like they were as cleared up as they were going to be but still not gone, I went to see a new eye doctor about the eye pain. He said I had had optic neuritis and referred me to a new neurologist. The new neuro won't tell me specifically what he suspects without doing more tests (and repeating some of the old ones), but had me admitted to the hospital to have them done right away. He would just say the he was quite sure that I had an inflammation to the CNS. I saw a piece of my file that I wasn't supposed to see and it said right across the top "Probable MS". He did another MRI, this time including the spine, but all without contrast. He ordered a lumbar puncture but after 4 tries without success I told them I'd had enough so I'll never know on that one.
He also ordered a new VEP and a VESS which I did Friday. The VEP was coming out with similar results to one that I had already done at my own request at my hometown hospital. My old neuro said they were normal, but the doc/tech who did the tests Friday said they didn't understand why the old tests were marked normal and that they would have to investigate a bit before doing the interpretation.
At the moment, I feel pretty good, but the fact that I'm not quite back to normal makes me wonder. The eye pain also makes me worry that ON (if that's what it was) will come back.
We'll see! Anyway, this is the short version of my story (luckily ;-) ) and I'm looking forward to chatting with you and hearing more of your stories.
Back in October when my only symptom was severe diplopia and some squeezing around my chest I had an MRI and an EMG on the arm, both of which were fine.
A month later though, instead of it going away as they told me it would likely do, I started having other symptoms (eye pain, lost vision in one eye and then had sustained loss of color vision, my legs were shaking so bad I was falling down when I tried to stand up, tingling fingers on left hand and in big toes, muscle twitching). My neurologist brushed everything off as stress at first, but when another doc (internist) gave me prednisone to help me get some strength back and maybe stop shaking, my double vision started clearing up. Everyone kept saying it was impossible, but my neurologist decided then that I had ocular myasthenia and now it was just all the other symptoms to be impossible. She's pushing me to have a full trans-sternum thymectomy. (yikes!) I have to say that she did all of the tests for myasthenia and ALL of them came back negative and add to that the fact that the meds for it caused only problems with no benefit whatsoever. All of the other doctors I've seen think that she's insanely rash and way off base on the myasthenia/thymectomy idea.
Around the end of November I started having weird electical-feeling shocks running down one of my legs to the knee (my new doc has identified them as L'hermittes) and the squeezing around the chest got worse. My left hand was slow and had limited sensation (mostly just to burn and tingle) for about 3 weeks in January, but now it's almost back to normal. Just those original fingers to keep on tingling a bit at the tips. My old neuro kept telling me it was because I was right handed. (!?) I'm still on Prednisone (going on 3 months now) and my diplopia is still gone, but my eyes still occasionally hurt.
At the end of January, when my symptoms seemed like they were as cleared up as they were going to be but still not gone, I went to see a new eye doctor about the eye pain. He said I had had optic neuritis and referred me to a new neurologist. The new neuro won't tell me specifically what he suspects without doing more tests (and repeating some of the old ones), but had me admitted to the hospital to have them done right away. He would just say the he was quite sure that I had an inflammation to the CNS. I saw a piece of my file that I wasn't supposed to see and it said right across the top "Probable MS". He did another MRI, this time including the spine, but all without contrast. He ordered a lumbar puncture but after 4 tries without success I told them I'd had enough so I'll never know on that one.
He also ordered a new VEP and a VESS which I did Friday. The VEP was coming out with similar results to one that I had already done at my own request at my hometown hospital. My old neuro said they were normal, but the doc/tech who did the tests Friday said they didn't understand why the old tests were marked normal and that they would have to investigate a bit before doing the interpretation.
At the moment, I feel pretty good, but the fact that I'm not quite back to normal makes me wonder. The eye pain also makes me worry that ON (if that's what it was) will come back.
We'll see! Anyway, this is the short version of my story (luckily ;-) ) and I'm looking forward to chatting with you and hearing more of your stories.
Hi and welcome to our forum.
Now I am going to play devils advocate here.....with what you have told us and what you have described, I would start DMDs really. What have you to loose?
The quicker you start them the better your recovery if it is an CIS.
Vertigo is one of the symptoms of MS.
I dont and never usually tell people they have a specific disease I am not an expert, BUT if the neurologist is happy to start you on a treatment for this CIS then I would go for it.
NEGATIVE LP does not mean you dont have MS. Nope.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36
I honestly if it was me would start the treatment especially with a new lesion showing.
May I ask please do not shoot me but I am an honest person and say it how I see it, are you hanging back because you are in denial? I kind of feel bad about writing that but......I just get a feeling.....
You know what i mean..xxxx I really would take the treatment for now and see how it makes you feel like i said it cant make it worse can it, and if you are active it can slow it all down.
BIG BIG HUGS. Maria. xxxx
Now I am going to play devils advocate here.....with what you have told us and what you have described, I would start DMDs really. What have you to loose?
The quicker you start them the better your recovery if it is an CIS.
Vertigo is one of the symptoms of MS.
I dont and never usually tell people they have a specific disease I am not an expert, BUT if the neurologist is happy to start you on a treatment for this CIS then I would go for it.
NEGATIVE LP does not mean you dont have MS. Nope.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36
I honestly if it was me would start the treatment especially with a new lesion showing.
May I ask please do not shoot me but I am an honest person and say it how I see it, are you hanging back because you are in denial? I kind of feel bad about writing that but......I just get a feeling.....
You know what i mean..xxxx I really would take the treatment for now and see how it makes you feel like i said it cant make it worse can it, and if you are active it can slow it all down.
BIG BIG HUGS. Maria. xxxx
Hey Kim,
Welcome to our group.
You will find much needed support here, along with- hopefully- some
useful information, based on members' experiences and knowledge.
May I suggest that you copy and paste your post and re-post it
as new question -your choice of title- as you will probably get more visibility and more replies.
Take care and I'll also reply to it soon.
Blessings.
Niko
P.S.
You have a beautiful family! Nice photo!
Welcome to our group.
You will find much needed support here, along with- hopefully- some
useful information, based on members' experiences and knowledge.
May I suggest that you copy and paste your post and re-post it
as new question -your choice of title- as you will probably get more visibility and more replies.
Take care and I'll also reply to it soon.
Blessings.
Niko
P.S.
You have a beautiful family! Nice photo!
Hello to all. I'm new to this board and looking for any thoughts on what I have going on right now. Little background...I'm female, 31 years old, mom of 5 year old twins, married for 8 years and am in overall good general health:)
The fact that I even found any lesions is crazy. The test was looking for a pituitary tumor given my very high prolactin levels (whole other issue). No tumor but there were spots in the distance...a full MRI with and w/o contrast was ordered. I didn't even make it out of the hospital parking lot when I slid that CD of the MRI into my laptop. Holy Christmas tree! It really did look like white Christmas lights scattered all over my brain. Literally dozens throughout the periventricular and subcortical white matter of both hemispheres. There was a big one in there too.. 2.1 x 1.2 x 1 cm in size. Nothing else abnormal to be found but my lesion load was scary enough.
My PCP sent me to a neurologist who did the usual neuro tests, reviewed my scans and basically said it looks like MS so lets just go for it and have the LP done to confirm...no beating around the bush or putting your through other tests. I liked that attitude and I went for it
About 2 weeks later I landed in the ER with very odd feeling in my right hand...pins and needles of a sort. Nothing more but the next morning my left hand had a Novocain type feeling. I could feel things, pick small things up but odd! Over the next two hours the cold Novocain feeling moved up my are, to my neck, up into my face, and across my left chest and back...but only the left side. I felt like I could draw a perfect line down the center of my body to show where the feeling stopped. Then at the ER they were taking my BP and the cuff made my arm feel like it was on FIRE. I even asked the nurse to check it, she did and even had me feel it. It was room temperature...not even warm...what the heck?!?!?! Nothing else was off with blood work. So what the heck was that?
On the 20th of October I got the LP...passed out. 2 days later needed a blood patch...passed out. I'm no sissy either so this was a little surprising to me. NEGATIVE...the LP came back negative for bands. My protein was within normal range but on the high end of normal. Nothing really to report other then that.
Neuro is still leaning toward MS and was willing to start me on DMDs giving the clinically isolated issue that landed me in the ER and that my MRI shows some "typical" lesions found in MS and the fact that just about everything else on the planet has been ruled out. But I wanted to wait and do another MRI to have more proof. He was okay with it.
Also, about a month before all this testing for MS started happening I went to the PCP with a bout of vertigo. Lasted about a day and a half is all...I just chalked it up to sinus issues or something. Now I wonder if this is related to a possible diagnosis.
I had a VEP and AEP test done about a month ago and a follow-up comparison MRI done about 2 weeks ago. It seems pretty clear to me that I have new lesions based on the CD but I have so many lesions it can be hard to tell. I have my follow-up appointment on this Saturday (February 11th, 2012) Ugh...I'm a wreck waiting. I just want an answer!
I have been on the MS forum for some time and someone mentioned the "limboland" forum! I'm so happy to find you all!
Thanks!
Kim
The fact that I even found any lesions is crazy. The test was looking for a pituitary tumor given my very high prolactin levels (whole other issue). No tumor but there were spots in the distance...a full MRI with and w/o contrast was ordered. I didn't even make it out of the hospital parking lot when I slid that CD of the MRI into my laptop. Holy Christmas tree! It really did look like white Christmas lights scattered all over my brain. Literally dozens throughout the periventricular and subcortical white matter of both hemispheres. There was a big one in there too.. 2.1 x 1.2 x 1 cm in size. Nothing else abnormal to be found but my lesion load was scary enough.
My PCP sent me to a neurologist who did the usual neuro tests, reviewed my scans and basically said it looks like MS so lets just go for it and have the LP done to confirm...no beating around the bush or putting your through other tests. I liked that attitude and I went for it
About 2 weeks later I landed in the ER with very odd feeling in my right hand...pins and needles of a sort. Nothing more but the next morning my left hand had a Novocain type feeling. I could feel things, pick small things up but odd! Over the next two hours the cold Novocain feeling moved up my are, to my neck, up into my face, and across my left chest and back...but only the left side. I felt like I could draw a perfect line down the center of my body to show where the feeling stopped. Then at the ER they were taking my BP and the cuff made my arm feel like it was on FIRE. I even asked the nurse to check it, she did and even had me feel it. It was room temperature...not even warm...what the heck?!?!?! Nothing else was off with blood work. So what the heck was that?
On the 20th of October I got the LP...passed out. 2 days later needed a blood patch...passed out. I'm no sissy either so this was a little surprising to me. NEGATIVE...the LP came back negative for bands. My protein was within normal range but on the high end of normal. Nothing really to report other then that.
Neuro is still leaning toward MS and was willing to start me on DMDs giving the clinically isolated issue that landed me in the ER and that my MRI shows some "typical" lesions found in MS and the fact that just about everything else on the planet has been ruled out. But I wanted to wait and do another MRI to have more proof. He was okay with it.
Also, about a month before all this testing for MS started happening I went to the PCP with a bout of vertigo. Lasted about a day and a half is all...I just chalked it up to sinus issues or something. Now I wonder if this is related to a possible diagnosis.
I had a VEP and AEP test done about a month ago and a follow-up comparison MRI done about 2 weeks ago. It seems pretty clear to me that I have new lesions based on the CD but I have so many lesions it can be hard to tell. I have my follow-up appointment on this Saturday (February 11th, 2012) Ugh...I'm a wreck waiting. I just want an answer!
I have been on the MS forum for some time and someone mentioned the "limboland" forum! I'm so happy to find you all!
Thanks!
Kim
Hi and welcome to our forum.
I did have a lymes test after asking for one and was told it was negative.
The reason why i did that was because of my fishing. My husband and I often went fishing on the lakes, which were also shared with many a sheep, which of course carry ticks.
I know that when you sit on the river bank for hours anything can bite us and we might not even notice.
I have been thinking about going to the Breakspeare medical centre near London who specialise in Lyme and other diseases. I have ummed and ahhed about it for too long really.
All I know is my illness is getting worse now and I am becoming more disabled.
IF I had Lymes I would not be in the least bit surprised.
Thank you so much for your post perhaps I need spurring on to do something now.
I am glad you got an answer. So many of these diseases well there are just no specialists really for them because they are all so new diseases really....the more we mix in where deer and sheep etc roam the more chance we have of getting something.
Again thank you. xxx Maria
I did have a lymes test after asking for one and was told it was negative.
The reason why i did that was because of my fishing. My husband and I often went fishing on the lakes, which were also shared with many a sheep, which of course carry ticks.
I know that when you sit on the river bank for hours anything can bite us and we might not even notice.
I have been thinking about going to the Breakspeare medical centre near London who specialise in Lyme and other diseases. I have ummed and ahhed about it for too long really.
All I know is my illness is getting worse now and I am becoming more disabled.
IF I had Lymes I would not be in the least bit surprised.
Thank you so much for your post perhaps I need spurring on to do something now.
I am glad you got an answer. So many of these diseases well there are just no specialists really for them because they are all so new diseases really....the more we mix in where deer and sheep etc roam the more chance we have of getting something.
Again thank you. xxx Maria
Hi - I remember you from the MS Forum where I spent a lot of time, having spinal tap, MRIs etc. yielding no answers. I've learned a lot since then. I am one of the many, many people with Lyme disease. Most are not diagnosed timely, if at all. That is because of the fixation on diagnostics for disease-diagnosing in this country. Truth is, Lyme diagnostics are highly inaccurate, missing potentially over half the people tested who really may have Lyme disease. And Lyme is as serious a disease as MS or cancer - it just isn't recognized as such because of widespread active suppression of Lyme in this country. Mrs. Aristotle, Lyme often involves excruciating pain. I suggest everyone here go to the ILADS website (International Lyme Disease) and view Leslie Wermer's video there (she died of Lyme) at http://www.ilads.org/lyme_disease/lyme_videos_9.html
Also, look at the home page at ilads.org and see what ILADS (a team of MDs) says about Lyme - how there need not be a "bull's eye rash" and you need never find a tick on yourself to have Lyme. They also mention the inaccuracy of Lyme tests. So what do you do? If your persistent neurologic symptoms have gone undiagnosed despite numerous tests, I suggest consulting a "Lyme-literate doctor." Note, I did NOT suggest seeing an infectious disease doctor, but a "Lyme-literate" doctor. To find one, contact ILADS or your local Lyme support group. Lyme is a disabler and a killer that can mimick MS, ALS and other diseases. Lyme diagnosis must be a "clinical diagnosis" based on your symptoms and history (NOT on diagnostics!). For years I was blown off by infectious disease doctors and told I had a false-positive Lyme test. The time I lost in dealing with the havoc that Lyme disease and its coinfections were wreaking inside my body due to nondiagnosis will likely result in permanent disability and premature death. Don't lose time. Find a "Lyme-literate" doctor now for evaluation. You may get your answer and start to feel better with treatment.
Also, look at the home page at ilads.org and see what ILADS (a team of MDs) says about Lyme - how there need not be a "bull's eye rash" and you need never find a tick on yourself to have Lyme. They also mention the inaccuracy of Lyme tests. So what do you do? If your persistent neurologic symptoms have gone undiagnosed despite numerous tests, I suggest consulting a "Lyme-literate doctor." Note, I did NOT suggest seeing an infectious disease doctor, but a "Lyme-literate" doctor. To find one, contact ILADS or your local Lyme support group. Lyme is a disabler and a killer that can mimick MS, ALS and other diseases. Lyme diagnosis must be a "clinical diagnosis" based on your symptoms and history (NOT on diagnostics!). For years I was blown off by infectious disease doctors and told I had a false-positive Lyme test. The time I lost in dealing with the havoc that Lyme disease and its coinfections were wreaking inside my body due to nondiagnosis will likely result in permanent disability and premature death. Don't lose time. Find a "Lyme-literate" doctor now for evaluation. You may get your answer and start to feel better with treatment.
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