Aa
Just found you...
Hi there, my name is Stacie. I have a husband and 2 boys. I have been a part of the MS community for quite sometime, trying to find answers. I am a limbolander, so glad to find this community. I have had symptoms of MS for a long time. My frist symptom was vertigo and it started in 2007. I fell twice down the stairs during this time. It's as if my foot didn't know where to go or how to move right. Since, I've had symptoms of tingling, numbness, heaviness, stiffening of my left leg. I've had horrible pain behind my right eye with blurry vision and dark spots, the right sdie of my face has gone numb, tongue numb, I have muscle weakness, and extreme fatigue. Just recently have been losing my balance a lot and after my last bout of numbness in my left leg, the left arm went numb and spread to my chest/trunk. It's been quite an ordeal, but unfortunately no answers. MRI of brain and cervical spine have come back negative for lesions and my recent LP was normal. I feel like I'm going crazy sometimes, living with these symptoms and no answers. I'm sure all of you feel the same way or similar. I look forward to getting to know you all more and how you are coping and/or taking action on behalf of your health.
Blessings
Stacie
Blessings
Stacie
Thank you Niko, I will look into this. I recently had a LP, I'm not sure, but I was thinking anything affecting the brain or spinal fluid would show in the fluid right? I really appreciate all the help and support, it helps so much knowing others care enough to try to help!
Blessings to you and your family!
Stacie
Blessings to you and your family!
Stacie
Hey Stacie,
This is something I have mentioned in a recent post.
"Leaky Brain Syndrome", which encompasses the Brain and
the CNS with many symptoms, some matching yours.
The cause of this is a compromised BBB-Blood Barrier Brain and an accumulation of ammonia in the brain, creating a mess.
Some studies found that people suffering from MS, Lymes and other chronic diseases all tested positive for ammonia in the brain.
There's a fast way to test. You just need a health practitioner ,familiar with Autonomous Response Testing, and a vial of ammonia. The test takes only a few minutes!
You may want to look into this. With leaky Brain Syndrome, an Alkaline Diet, known for lts effectiveness in all conditions is NOT recommended here, as it actually feeds the Leaky Brain Syndrome.
I believe this the only time an Alkaline Diet has negative effects.
It's good to rule it out, I think.
Let me know if you need more info.
Blessings,
Niko
This is something I have mentioned in a recent post.
"Leaky Brain Syndrome", which encompasses the Brain and
the CNS with many symptoms, some matching yours.
The cause of this is a compromised BBB-Blood Barrier Brain and an accumulation of ammonia in the brain, creating a mess.
Some studies found that people suffering from MS, Lymes and other chronic diseases all tested positive for ammonia in the brain.
There's a fast way to test. You just need a health practitioner ,familiar with Autonomous Response Testing, and a vial of ammonia. The test takes only a few minutes!
You may want to look into this. With leaky Brain Syndrome, an Alkaline Diet, known for lts effectiveness in all conditions is NOT recommended here, as it actually feeds the Leaky Brain Syndrome.
I believe this the only time an Alkaline Diet has negative effects.
It's good to rule it out, I think.
Let me know if you need more info.
Blessings,
Niko
Sidesteps, how wonderfully right you are. I LOVE how you said that...."Think strategy....your goal is to figure out what's wrong, the type of DX isn't as important as long as you get your answer :)" I am doing my best to be assertive, please pray that I keep doing so and get answers very soon. I've had a habit of NOT being assertive, which might be why I'm where I am now :(
I just recently asked for my MRI's . I will definitely educate myself on what lesions look like and be sure to ask the specialist to look at them.
Thank you so much, I so appreciate your thoughts!
Blessings
I just recently asked for my MRI's . I will definitely educate myself on what lesions look like and be sure to ask the specialist to look at them.
Thank you so much, I so appreciate your thoughts!
Blessings
Stacie,
I was where you were a year ago; except my symptoms really only start a few months prior. There hasn't been a real long history of my symptoms; so I'm totally new to all of this craziness. :(
That said, your doctor does sound wonderful... but I also urge you to look through you MRI yourself. If you are even someone able to look at MS lesions online and do some research then look through it and right down slides that you see might be questionable. The reason? I had two MRIs in 6 months and in those two MRIs they missed my largest lesion.
I just kept at trying to figure out WHY I felt so sick...so I got a referral about 4 months after the attack. My first appointment with a MSologist was interesting, he listed all the positives to my situation of at the time my not having lesions and gave me all the statistics associated with someone that was CiS without lesions. Problem was --- he didn't thoroughly review my MRI himself and also missed the lesion! lol ~
So now, I've had three/four attacks, one was undocumented (and was left between doctors because of his not calling me back during an attack) so I am stuck in limboland because my new MSologist really wants to see me sick or with new lesions. She also seems to not want to freak me out but that has caused more concern. In the future, I'll take someone with me that is a bit more objective than I am.
In the end, I think with MSologists, I'd pick someone who has the best equipment available to them because you can ALWAYS take those tests elsewhere for a second or third opinion. Think strategy... your goal is to figure out what's wrong, the type of DX isn't as important as long as you get your answer. :)
I am glad you are being assertive.
I was where you were a year ago; except my symptoms really only start a few months prior. There hasn't been a real long history of my symptoms; so I'm totally new to all of this craziness. :(
That said, your doctor does sound wonderful... but I also urge you to look through you MRI yourself. If you are even someone able to look at MS lesions online and do some research then look through it and right down slides that you see might be questionable. The reason? I had two MRIs in 6 months and in those two MRIs they missed my largest lesion.
I just kept at trying to figure out WHY I felt so sick...so I got a referral about 4 months after the attack. My first appointment with a MSologist was interesting, he listed all the positives to my situation of at the time my not having lesions and gave me all the statistics associated with someone that was CiS without lesions. Problem was --- he didn't thoroughly review my MRI himself and also missed the lesion! lol ~
So now, I've had three/four attacks, one was undocumented (and was left between doctors because of his not calling me back during an attack) so I am stuck in limboland because my new MSologist really wants to see me sick or with new lesions. She also seems to not want to freak me out but that has caused more concern. In the future, I'll take someone with me that is a bit more objective than I am.
In the end, I think with MSologists, I'd pick someone who has the best equipment available to them because you can ALWAYS take those tests elsewhere for a second or third opinion. Think strategy... your goal is to figure out what's wrong, the type of DX isn't as important as long as you get your answer. :)
I am glad you are being assertive.
Hi again, and thanks for the warm welcome. I have seen many of you on the MS forum as well! This is such a strange, sad place we are in in limboland. I have had days of complete darkness and others of joy and light. I went to my neuro yesterday and he said he really feels it is not MS, but he is honoring me by giving me the referral to the MS specialist. I go see the specialist on Jan. 25th. I just hope not matter what happens I will know what to do next. I think the hardest thing for me will be hearing that I do not have MS and then having no direction of what to do next.
Niko, I asked the neuro yesterday if I had been tested for all mimics and he said all of them which share the symptoms I have. He feels my symptoms are coming from my Celiac Disease which I don't feel is the case. He's a good neuro, and I just think he is at a loss. My gastro doctor feels that Celiac is not causing the neuro symptoms. I have been on the gluten free diet for 2 1/2 yrs. I am doing well on it and am very careful...I don't understand how my symptoms would be progressing and getting worse when I am on the diet....doens't make sense. Usually if there are neuro symptoms with Celiac it is peripheral...fingers, toes, extremities. Not, leg, arm, face, chest.
About the things leading up to my symptoms. I had a lot of stress in my life when the vertigo started. I fell down stairs twice. After the vertigo stopped I felt okay for quite a while and then foot, leg started burning and going numb, right sided weakness -I would just trip or fall. Started losing balance, blurry vision. Then, again I was fine. Each time I had an "attack" there would be new symptoms that were progressing. Last year, the right side of my face went numb, tongue, lip, cheek, and spread up and around my head. I couldn't swallow well and couldn't talk. The beginning of Dec. I had extreme eye pain, blurry vision, electric shock (which I had had before but not like that) that started at base of skull and ran down my spine through my leg. I felt paralized for a bit. Numbness spread up my leg, my arm and across my trunk and stayed for a day-two.
Just lots of things that are scary, but now are becoming the new normal...how sad.
ANyway, that's a brief snip it of what's going on. (even though I wrote a small novel :) hee hee
Blessings
Stacie
Niko, I asked the neuro yesterday if I had been tested for all mimics and he said all of them which share the symptoms I have. He feels my symptoms are coming from my Celiac Disease which I don't feel is the case. He's a good neuro, and I just think he is at a loss. My gastro doctor feels that Celiac is not causing the neuro symptoms. I have been on the gluten free diet for 2 1/2 yrs. I am doing well on it and am very careful...I don't understand how my symptoms would be progressing and getting worse when I am on the diet....doens't make sense. Usually if there are neuro symptoms with Celiac it is peripheral...fingers, toes, extremities. Not, leg, arm, face, chest.
About the things leading up to my symptoms. I had a lot of stress in my life when the vertigo started. I fell down stairs twice. After the vertigo stopped I felt okay for quite a while and then foot, leg started burning and going numb, right sided weakness -I would just trip or fall. Started losing balance, blurry vision. Then, again I was fine. Each time I had an "attack" there would be new symptoms that were progressing. Last year, the right side of my face went numb, tongue, lip, cheek, and spread up and around my head. I couldn't swallow well and couldn't talk. The beginning of Dec. I had extreme eye pain, blurry vision, electric shock (which I had had before but not like that) that started at base of skull and ran down my spine through my leg. I felt paralized for a bit. Numbness spread up my leg, my arm and across my trunk and stayed for a day-two.
Just lots of things that are scary, but now are becoming the new normal...how sad.
ANyway, that's a brief snip it of what's going on. (even though I wrote a small novel :) hee hee
Blessings
Stacie
Hey luvnGod Stacie.
Welcome. You've been through a lot! Like many people here.
However, there are a lot things that can be done and there's some positive stories like Sidesteps.
Sidesteps, I do hope that that you are on a permanent remission, with a one way ticket out of Limboland. lol!
But you can come here occasionally and visit of course. I'm happy for you!
In my case it's in my nature, to pursue the "impossible", to defy the odds,
to listen to my Spirit and to tap into my God given power to be able to fulfill
my True Purpose in Life.
I was in the past (seems like another life) in my own Limboland-undiagnosed, suffering, having no faith in the medical system that offered me no answers, no help-being treated with suspicion of faking or being
considered a psyche case or whatever.
I would take a slap in the face instead of that, anytime! lol!
And actually it was an easy decision. I took matters in my own hands, as I KNEW deep inside me that there was a different plan for me. I'm very Spiritual, and all I needed to do was to reconnect with my Source.
And it worked for the best possible outcome.
Long story, short, I'm here now, healthy and willing to help others.
It is part of our purpose to help and support one another. That's how our society can be functional again. I am so saddened to see how dysfunctional our health care system has become! We ought to do something about it, not for ourselves, but for our children and grand children
As the creators of this mess, we can be the creators of change.
Talk to your doctors. Appeal to their Inner Wisdom. Help them realize
that that they are still human, being of service to other humans in need, and not gears of an uncaring and dysfunctional mechanism whose purpose is only profit,power and greed!
Please post again with more details about events that preceded the onset
of your symptoms, any significant traumas perhaps or very stressful situations and are there any traits of yourself difficult to explain?
On the physical level, have you and your specialists ruled out the diseases that mimic MS? That includes Infectious diseases (most of the time extremely difficult to detect), Autoimmune diseases, Cerebro-Vascular, Neurological conditions and many others?
Please post again soon!
Blessings to you and your family.
Niko
Welcome. You've been through a lot! Like many people here.
However, there are a lot things that can be done and there's some positive stories like Sidesteps.
Sidesteps, I do hope that that you are on a permanent remission, with a one way ticket out of Limboland. lol!
But you can come here occasionally and visit of course. I'm happy for you!
In my case it's in my nature, to pursue the "impossible", to defy the odds,
to listen to my Spirit and to tap into my God given power to be able to fulfill
my True Purpose in Life.
I was in the past (seems like another life) in my own Limboland-undiagnosed, suffering, having no faith in the medical system that offered me no answers, no help-being treated with suspicion of faking or being
considered a psyche case or whatever.
I would take a slap in the face instead of that, anytime! lol!
And actually it was an easy decision. I took matters in my own hands, as I KNEW deep inside me that there was a different plan for me. I'm very Spiritual, and all I needed to do was to reconnect with my Source.
And it worked for the best possible outcome.
Long story, short, I'm here now, healthy and willing to help others.
It is part of our purpose to help and support one another. That's how our society can be functional again. I am so saddened to see how dysfunctional our health care system has become! We ought to do something about it, not for ourselves, but for our children and grand children
As the creators of this mess, we can be the creators of change.
Talk to your doctors. Appeal to their Inner Wisdom. Help them realize
that that they are still human, being of service to other humans in need, and not gears of an uncaring and dysfunctional mechanism whose purpose is only profit,power and greed!
Please post again with more details about events that preceded the onset
of your symptoms, any significant traumas perhaps or very stressful situations and are there any traits of yourself difficult to explain?
On the physical level, have you and your specialists ruled out the diseases that mimic MS? That includes Infectious diseases (most of the time extremely difficult to detect), Autoimmune diseases, Cerebro-Vascular, Neurological conditions and many others?
Please post again soon!
Blessings to you and your family.
Niko
Welcome! I thought your user name looked familiar. I must have seen it over on the MS forum at some point in time. I think most of us float over there every once in a while...
I also have leg issues, but in my right leg. I was actually just fitted for an AFO for my foot drop. I am having mixed emotions about it. I think it would be good if it fit properly. They gave me a stock one for now. We are trying to make that work so I don't have to fork over the money for a custom one.
Have you had any other tests done? An MRI of your T-spine? Or evoked potentials? Blood tests?
I think we all feel a little crazy at times and we all seem to deal with it differently. I think most of us over here have taken a break a time or two when it gets to be too much. It is soo wonderful over here though, everyone knows exactly what you are going through and it is a place to belong when you don't really fit in anywhere else.
Take care and welcome again! =)
Sarah
I also have leg issues, but in my right leg. I was actually just fitted for an AFO for my foot drop. I am having mixed emotions about it. I think it would be good if it fit properly. They gave me a stock one for now. We are trying to make that work so I don't have to fork over the money for a custom one.
Have you had any other tests done? An MRI of your T-spine? Or evoked potentials? Blood tests?
I think we all feel a little crazy at times and we all seem to deal with it differently. I think most of us over here have taken a break a time or two when it gets to be too much. It is soo wonderful over here though, everyone knows exactly what you are going through and it is a place to belong when you don't really fit in anywhere else.
Take care and welcome again! =)
Sarah
Welcome Stacie! We all are in very similiar categories. Based on my last MRI, I may be on my way out of limboland but we will see what she says.
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