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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 Sandy,
I'm glad you've found us. Sounds like you've got a lot going on, but also that your doctors are taking good care of you so far.
MS is scary, but I've found that it gets less scary the more I know about it. It can be really hard for some people and not very bad at all for others, but every case is different from the next one. There are also quite a few medication options available these days to help slow progression down.
Either way, you've found a great place to share support and talk with others who've already been down the road we're going down now. Welcome and if there is anything you want to ask or share, feel free.
Laura
I'm glad you've found us. Sounds like you've got a lot going on, but also that your doctors are taking good care of you so far.
MS is scary, but I've found that it gets less scary the more I know about it. It can be really hard for some people and not very bad at all for others, but every case is different from the next one. There are also quite a few medication options available these days to help slow progression down.
Either way, you've found a great place to share support and talk with others who've already been down the road we're going down now. Welcome and if there is anything you want to ask or share, feel free.
Laura
Hello Everyone! I've been posting in the MS forum since April 13th. I am also in limbo land at this time. I have had a few symptoms here and there in the past 5 years but never thought anything of it and didn't want to complain to the doctor in fear of sounding like a was a hypochondriac. Then in the end of March and beginning of April,
I began having ocular migraines. I didn't know what they were and kept having them and freaked out. Went to prompt care and they thought it could be detached retina. They sent me to an eye specialist. The eye doctor said my eyes looked healthy. He kept stressing that I need to see my regular doctor right away. I finally did and she asked if I have had balance issues or dizzy at all. I said yes. She ordered an MRI. Went to a Neuro and she said I have extensive hyperintense periventricular white matter lesions on my brain. She said it could be MS.
I have a Lumbar Puncture scheduled on May 15th. I also have to do a bunch of blood work.
I never considered this possibility. Didn't know much about MS at all. I'm really scared and have been dealing with this scare for a few weeks now.
Sandy
I began having ocular migraines. I didn't know what they were and kept having them and freaked out. Went to prompt care and they thought it could be detached retina. They sent me to an eye specialist. The eye doctor said my eyes looked healthy. He kept stressing that I need to see my regular doctor right away. I finally did and she asked if I have had balance issues or dizzy at all. I said yes. She ordered an MRI. Went to a Neuro and she said I have extensive hyperintense periventricular white matter lesions on my brain. She said it could be MS.
I have a Lumbar Puncture scheduled on May 15th. I also have to do a bunch of blood work.
I never considered this possibility. Didn't know much about MS at all. I'm really scared and have been dealing with this scare for a few weeks now.
Sandy
Thanks for the welcome! I, too, believe it is wwaaaaayyyy under diagnosed. Doctors are remarkably unaware of the myriad of symptoms and many go undiagnosed for years. I had it for 6 years before my diagnosis.
I will hang around to see if anybody posts who might have Lyme.
I will hang around to see if anybody posts who might have Lyme.
Hello and welcome to the forum! I'm really glad your here! Maybe you can stick around and give some advice to others going through similar situations regarding Lyme's.
We see many people come and go through this forum seeking a diagnosis of some kind. I think that like your case, Lyme's is WAY underdiagnosed. We have another forum member here who is very knowledgeable about Lyme's and other coinfections. He could maybe shed some light for you as to why it took so long for them to find your Lyme's.
I am really glad for you that you finally have the answers to what is ailing you and that you are on your way to recovery. Please stick around and share what you can/will. We can always use more forum members who are knowledgeable about other neuro diseases other than MS.
Take care!
Sarah
We see many people come and go through this forum seeking a diagnosis of some kind. I think that like your case, Lyme's is WAY underdiagnosed. We have another forum member here who is very knowledgeable about Lyme's and other coinfections. He could maybe shed some light for you as to why it took so long for them to find your Lyme's.
I am really glad for you that you finally have the answers to what is ailing you and that you are on your way to recovery. Please stick around and share what you can/will. We can always use more forum members who are knowledgeable about other neuro diseases other than MS.
Take care!
Sarah
Hello. I just joined the forum. I am pretty much out of Limboland now, but I wish I had found this forum when I was in it!
I was deteriorating rapidly with fatigue, brain fog, headaches, unexplained air hunger and shortness of breath (lungs are fine, no asthma), tingling, twitching, light sensitivity, reduced vision, floaters, tinnitus, sound sensitivity, and cognitive problems. An MRI showed about 20 scattered small lesions in my white matter, all unenhanced.
Tests for MS, sarcoid, cancer, and other neurological possibilities were coming up negative and my neuro was stumped. I came across Lyme Disease in my research and my neuro tested my CSF and my blood, but both were negative.
I also developed sore and then painful ribs, stomach pain, IBS-like symptoms, loss of appetite, loss of sense of taste, weight loss, gallbladder and liver pain, kidney/adrenal pain, loss of libido, hand tremor, high BP, and elevated heart rate with palpitations up to 155 bpm. Having so many non-MS symptoms convinced me it wasn't MS.
I ended up in the hospital with severe abdominal pain where they insisted I didn't have Lyme, but they had no idea what was wrong. They discharged me with a Vicodin Rx and told me to go to a nearby research hospital. Since it would take 2 months to get in and I felt like I was dying, I went out of network to an LLMD, a Lyme Literate Medical Doctor. I got tested at IGeneX, where they found Lyme specific antibodies in my blood. I was diagnosed by my LLMD and began treatment with long term antibiotics. I am steadily getting better, but I have a long way to go.
I just had a follow up MRI and I am hoping that some of my lesions have shrunk or healed. In some cases, the lesions are permanent, but I am hoping some of them heal.
I have learned a lot about the body during my research, especially neurological issues as well as GI issues. I went 16 months from the onset of chronic symptoms and 6 years total with Lyme and a coinfection called Bartonella before I was diagnosed. I hope my experience can help others in their journey through Limboland.
I was deteriorating rapidly with fatigue, brain fog, headaches, unexplained air hunger and shortness of breath (lungs are fine, no asthma), tingling, twitching, light sensitivity, reduced vision, floaters, tinnitus, sound sensitivity, and cognitive problems. An MRI showed about 20 scattered small lesions in my white matter, all unenhanced.
Tests for MS, sarcoid, cancer, and other neurological possibilities were coming up negative and my neuro was stumped. I came across Lyme Disease in my research and my neuro tested my CSF and my blood, but both were negative.
I also developed sore and then painful ribs, stomach pain, IBS-like symptoms, loss of appetite, loss of sense of taste, weight loss, gallbladder and liver pain, kidney/adrenal pain, loss of libido, hand tremor, high BP, and elevated heart rate with palpitations up to 155 bpm. Having so many non-MS symptoms convinced me it wasn't MS.
I ended up in the hospital with severe abdominal pain where they insisted I didn't have Lyme, but they had no idea what was wrong. They discharged me with a Vicodin Rx and told me to go to a nearby research hospital. Since it would take 2 months to get in and I felt like I was dying, I went out of network to an LLMD, a Lyme Literate Medical Doctor. I got tested at IGeneX, where they found Lyme specific antibodies in my blood. I was diagnosed by my LLMD and began treatment with long term antibiotics. I am steadily getting better, but I have a long way to go.
I just had a follow up MRI and I am hoping that some of my lesions have shrunk or healed. In some cases, the lesions are permanent, but I am hoping some of them heal.
I have learned a lot about the body during my research, especially neurological issues as well as GI issues. I went 16 months from the onset of chronic symptoms and 6 years total with Lyme and a coinfection called Bartonella before I was diagnosed. I hope my experience can help others in their journey through Limboland.
Hi and welcome! I'm fairly new here as well. :) Sorry you've been through so much and with doctors who aren't helping. My doctors sent me through the mental route too and I took it to prove them wrong. The psych that they sent me to decided on the first appointment that I needed new medical doctors and even wrote me some referrals to get me started in the right direction. With the psych saying that my problems weren't due to any psychological reason, my doctors - out of professional courtesy, if nothing else - had to respect his opinion and were forced to dig deeper. You may just find a friend in talking to a psychiatrist - especially since your PCP isn't helping.
Aside from that, have you thought about getting a second opinion from another neurologist? You have the right to a second opinion and your PCP should be willing to write a referral for one, even if he agrees with the first diagnosis.
Hang in there! Limboland s*cks, but we're all here together and happy to support each other and that helps.
Aside from that, have you thought about getting a second opinion from another neurologist? You have the right to a second opinion and your PCP should be willing to write a referral for one, even if he agrees with the first diagnosis.
Hang in there! Limboland s*cks, but we're all here together and happy to support each other and that helps.
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