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
Hello Missfett,
Welcome to Limbo but hopefully you will get answers in the near future so you don't have to be here long.
It seems as if there is alot going on and you definitely need to see a Neurologist and at that point MRI's can be done etc.
We have so many wonderful members on this forum. Mrs.Aristotle started this and is great source of info along with so many others. They will be along soon to welcome you and offer good advice.
Here in limbo we all try to encourage,pray and help one another.
It is a blessing to have others to go along this journey with. Some are here longer than others but:) we have some that have been dx'd that visit and offer great encouragement and advice.:)
So, Welcome again and please do not lose faith and hope. There is a light at the end of this dark tunnel.
I'll be lifting you in prayer each day. Please let us know more of any test you may have had and please get your GP to refer you to neurologist ASAP!
Blessings to you,
Tammy:)
Welcome to Limbo but hopefully you will get answers in the near future so you don't have to be here long.
It seems as if there is alot going on and you definitely need to see a Neurologist and at that point MRI's can be done etc.
We have so many wonderful members on this forum. Mrs.Aristotle started this and is great source of info along with so many others. They will be along soon to welcome you and offer good advice.
Here in limbo we all try to encourage,pray and help one another.
It is a blessing to have others to go along this journey with. Some are here longer than others but:) we have some that have been dx'd that visit and offer great encouragement and advice.:)
So, Welcome again and please do not lose faith and hope. There is a light at the end of this dark tunnel.
I'll be lifting you in prayer each day. Please let us know more of any test you may have had and please get your GP to refer you to neurologist ASAP!
Blessings to you,
Tammy:)
Hello, all.
I'm a 34-yr-old single mum. I fell ill 3 years and one day ago. I still have no diagnosis.
I just discovered this group tonight. I read through several of the previous posts, and it seems this is where I belong.
My symptoms began very suddenly, 6 days after I moved to Arizona. I was walking to the car to clean it out and suddenly felt very dizzy and faint, with a strange feeling in my chest, as though I were wearing a vest that kept tightening itself. I sat down in the car for a while, and then made myself get up and get back inside the apartment. Once back indoors, my symptoms persisted, and my heart rate was jumping up to 140bpm while I was lying down, and then, after 20 minutes or so, it would crash down to about 50bpm. My level of consciousness dropped so badly that I could barely speak complete sentences.
I went to the emergency room that night and they couldn't find anything wrong with me, noting only that my heart rate was low. They sent me home.
I was so weak and dizzy and confused that I could barely sit up to eat. I couldn't think straight or speak at a normal pace and without slurring and stammering. Noises were piercing and would send a feeling of electric shock from the base of my skull to my chest. Vertigo set in, along with the dizziness/faintness. My lips and nose area, my arms, legs, fingers, pelvic floor area, and abdomen were tingly like they had fallen asleep... this usually came in sickening waves, about 3 seconds apart. I became intolerant to any medication, caffeine, nicotine, and alcohol (anything that worked on the CNS or changed my blood pressure). My metabolism dropped to completely nothing... I gained 30 pounds in three weeks, making me the heaviest I'd been in my life, aside from pregnancy.
I spent months like that, barely able to leave my bed, and going to the emergency room when my heart rate would get too high or when I was barely able to maintain consciousness. Each time, they sent me home, only noting that my heart rate and blood pressure were low.
11 months later, I began to get red blotches in my eyes from burst blood vessels, and it felt like there was lots of pressure in my eyes. They felt like they were bulging. I got a migraine and was in so much pain that I had to take something for it, despite the intolerance to meds. I cut an ibuprofen in half and took it, and fell asleep about an hour later. When I woke, I noticed that my vision was blurry. I thought it was just blurry from the cat allergy or sleeping with my arm over my eyes or something, and that it would correct itself as the day went on. It didn't, and I realised that my eye wasn't actually blurry... I was experiencing double vision, in just one eye, so I was seeing three images, slightly askew from one another.
I saw my doctor the next day and he sent me to an opthalmologist. My eyes were perfectly healthy.
Several emergency room visits later, my doctor finally got me in to see a cardiologist. They did a tilt-table test, a 48-hr Holter monitor, and echocardiogram. Everything came back normal except that I am hypovolemic and that my heart rate drops as low as 38 beats/minute.
I had a Lyme's titer, thyroid tests, endocrine tests, etc. No signs of infection, hormone imbalance, organ dysfunction, etc.
As far as any test went, I was perfectly healthy.
In the meantime, my vision grew worse, and I have double vision in my left eye. About a year ago, the right eye began to get a little blurry, as well... so I see two clear images superimposed over a third, blurry one.
The heart rate, blood pressure, vertigo, and dizziness issues continued, along with the impaired mental functioning and loss of memory.
I am always ill with these things, but they become especially bad if I try to walk anywhere or do even the lightest of housework. Sometimes, I will have an episode of these exacerbated symptoms for no apparent reason, but it's usually brought on by trying to take care of my apartment by vacuuming or tidying up. When I have these "episodes", they last anywhere from several hours to 6 months.
After 3 years and a day, I am no closer to discovering what's wrong with me than I was the day it suddenly began. I cannot work, I cannot take care of my own apartment. My teenage son handles the shopping and laundry and pays the bills, because I physically cannot.
My metabolism is still nearly dead, and I have not been able to take off the 30 extra pounds (because I can't exercise). My maintenance weight intake is now 600-700 calories/day. If I eat any more than that, I pack on weight. I don't dare eat less than that, to take off the extra weight, even though it would make for less work in just moving around, and trigger the illness less.
I currently have no more testing lined up, and no more appointments lined up. I'm fairly certain that my doctors just don't care about whether I get treatment or not.
After 3 years of being unable to work and being unwilling to ask for help, I am finally applying for SSI. I no longer have any faith that this will get sorted.
I'm a 34-yr-old single mum. I fell ill 3 years and one day ago. I still have no diagnosis.
I just discovered this group tonight. I read through several of the previous posts, and it seems this is where I belong.
My symptoms began very suddenly, 6 days after I moved to Arizona. I was walking to the car to clean it out and suddenly felt very dizzy and faint, with a strange feeling in my chest, as though I were wearing a vest that kept tightening itself. I sat down in the car for a while, and then made myself get up and get back inside the apartment. Once back indoors, my symptoms persisted, and my heart rate was jumping up to 140bpm while I was lying down, and then, after 20 minutes or so, it would crash down to about 50bpm. My level of consciousness dropped so badly that I could barely speak complete sentences.
I went to the emergency room that night and they couldn't find anything wrong with me, noting only that my heart rate was low. They sent me home.
I was so weak and dizzy and confused that I could barely sit up to eat. I couldn't think straight or speak at a normal pace and without slurring and stammering. Noises were piercing and would send a feeling of electric shock from the base of my skull to my chest. Vertigo set in, along with the dizziness/faintness. My lips and nose area, my arms, legs, fingers, pelvic floor area, and abdomen were tingly like they had fallen asleep... this usually came in sickening waves, about 3 seconds apart. I became intolerant to any medication, caffeine, nicotine, and alcohol (anything that worked on the CNS or changed my blood pressure). My metabolism dropped to completely nothing... I gained 30 pounds in three weeks, making me the heaviest I'd been in my life, aside from pregnancy.
I spent months like that, barely able to leave my bed, and going to the emergency room when my heart rate would get too high or when I was barely able to maintain consciousness. Each time, they sent me home, only noting that my heart rate and blood pressure were low.
11 months later, I began to get red blotches in my eyes from burst blood vessels, and it felt like there was lots of pressure in my eyes. They felt like they were bulging. I got a migraine and was in so much pain that I had to take something for it, despite the intolerance to meds. I cut an ibuprofen in half and took it, and fell asleep about an hour later. When I woke, I noticed that my vision was blurry. I thought it was just blurry from the cat allergy or sleeping with my arm over my eyes or something, and that it would correct itself as the day went on. It didn't, and I realised that my eye wasn't actually blurry... I was experiencing double vision, in just one eye, so I was seeing three images, slightly askew from one another.
I saw my doctor the next day and he sent me to an opthalmologist. My eyes were perfectly healthy.
Several emergency room visits later, my doctor finally got me in to see a cardiologist. They did a tilt-table test, a 48-hr Holter monitor, and echocardiogram. Everything came back normal except that I am hypovolemic and that my heart rate drops as low as 38 beats/minute.
I had a Lyme's titer, thyroid tests, endocrine tests, etc. No signs of infection, hormone imbalance, organ dysfunction, etc.
As far as any test went, I was perfectly healthy.
In the meantime, my vision grew worse, and I have double vision in my left eye. About a year ago, the right eye began to get a little blurry, as well... so I see two clear images superimposed over a third, blurry one.
The heart rate, blood pressure, vertigo, and dizziness issues continued, along with the impaired mental functioning and loss of memory.
I am always ill with these things, but they become especially bad if I try to walk anywhere or do even the lightest of housework. Sometimes, I will have an episode of these exacerbated symptoms for no apparent reason, but it's usually brought on by trying to take care of my apartment by vacuuming or tidying up. When I have these "episodes", they last anywhere from several hours to 6 months.
After 3 years and a day, I am no closer to discovering what's wrong with me than I was the day it suddenly began. I cannot work, I cannot take care of my own apartment. My teenage son handles the shopping and laundry and pays the bills, because I physically cannot.
My metabolism is still nearly dead, and I have not been able to take off the 30 extra pounds (because I can't exercise). My maintenance weight intake is now 600-700 calories/day. If I eat any more than that, I pack on weight. I don't dare eat less than that, to take off the extra weight, even though it would make for less work in just moving around, and trigger the illness less.
I currently have no more testing lined up, and no more appointments lined up. I'm fairly certain that my doctors just don't care about whether I get treatment or not.
After 3 years of being unable to work and being unwilling to ask for help, I am finally applying for SSI. I no longer have any faith that this will get sorted.
Hi another invisible dont want you to think no one has NOTICED YOU LOL.
Could you impart your information on our main threads? I would be interested in reading it. Mariax
Could you impart your information on our main threads? I would be interested in reading it. Mariax
Hi, it's AnotherInvisible. I lost my password and for some reason, the email they send when you ask them to let you reset wasn't working. Oh, well. Now I'm Another_Invisible.
I haven't been on since I've been diagnosed, but for some reason was browsing the other night. I think I might have some info. that would be useful to a couple of Limbolanders, so I've hopped on for a bit.
Wishing the best to everyone!
I haven't been on since I've been diagnosed, but for some reason was browsing the other night. I think I might have some info. that would be useful to a couple of Limbolanders, so I've hopped on for a bit.
Wishing the best to everyone!
Awww. Thank you Laura and Tammy! You are both very sweet and thank you for the warm welcome and the prayers. I didn't realize there was this limbo forum and I'm thrilled to find it.
I just had my physical today and found out that my BP is 140 systolic. It normally is 120 or lower. Doctor took it sitting and standing. It dropped 20 when standing. It was 120. She's making me come back in a month to check that. ugh. Just another health thing to worry about! I'm tired of health issues! Oh well. Could be worse.
You're all in my thoughts and prayers. Hugs!
I just had my physical today and found out that my BP is 140 systolic. It normally is 120 or lower. Doctor took it sitting and standing. It dropped 20 when standing. It was 120. She's making me come back in a month to check that. ugh. Just another health thing to worry about! I'm tired of health issues! Oh well. Could be worse.
You're all in my thoughts and prayers. Hugs!
Welcome Sandy,
I too am in Limbo possible MS.
I have seen/read several of your post's over on MS forum. You seem to be a very caring and optimistic person. That is what we all need!
Here in Limbo it is hard but just know that we're all here for each other and will lift up one another in prayer and we also have several from MS forum that comment and encourage us during our journey of waiting to where it may be the good Lord is sending us. It's sort of like were in Limbo as a way of being prepared for what is to come with our dx.
Some don't have as long of a wait as others. But while we wait we have this forum of family and friends to help us along the way.
I thank God for this forum and MS forum for all their prayers,support and well given advice.
So, WELCOME again and I pray you will get answers soon.:)
Grateful and blessed,
Tammy:)
I too am in Limbo possible MS.
I have seen/read several of your post's over on MS forum. You seem to be a very caring and optimistic person. That is what we all need!
Here in Limbo it is hard but just know that we're all here for each other and will lift up one another in prayer and we also have several from MS forum that comment and encourage us during our journey of waiting to where it may be the good Lord is sending us. It's sort of like were in Limbo as a way of being prepared for what is to come with our dx.
Some don't have as long of a wait as others. But while we wait we have this forum of family and friends to help us along the way.
I thank God for this forum and MS forum for all their prayers,support and well given advice.
So, WELCOME again and I pray you will get answers soon.:)
Grateful and blessed,
Tammy:)
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.
