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New to Neuro. "Limbo Land"
Hello Everyone, Happy to have found a place where at least someone will understand the frustration. Am 44 yrs. of age. 16 yrs. ago I experienced my first TIA with vision loss and extreme head pain on left side. 13 yrs. ago was diagnosed, after 2 yrs. of going from doctor to doctor, with fibromyalgia. Have experienced chronic muscle pain and stiffness, fibro fog, chronic fatigue, depression and all the other wonderfull things that go along w Fibro. 6 wks. ago experienced my second TIA with left side arm and leg weakness and left foot numbness. The doctor who saw me in the emergency room suggested that perhaps I did not have fibro., that it may be MS. So the family doctor orders a brain MRI w and without contrast, to bring along to my initial neurologist appointment, have not been to see him yet. The MRI results show: periventricular white matter changes and a punctate 3 mm area of increased signal adjacent to the right lateral ventricle in the parietal lobe. Well, that is mumbo-jumbo to me, don't know what it means. If anyone does I sure would appreciate the info. Have more recently, past 6 months, been experiencing severely decreased cognitive functions, loss of balance, severe bodywide muscle weakness, dragging feet. This is very frustrating and hope I don't end up in "neurological Lumbo Land" too long, hoping to find some answers when I begin to see this Neurologist, but obviously answers don't always come quickly, as I see from this site. I'm gratefull to have found this site. Blessings to all in "limbo land", it's a frustrating place to be, nice to have some company.
Your story sounds familiar to me in regard to the MRI results and the Fibro diagnosis.
I was given the diagnosis of Fibro about 6 months ago even though I didn't meet the criteria for it. My suspicion was that the doctor needed something so that he could help me with the pain etc. Several doctors have now examined me and told me that I don't have it. It is interesting to note that Fibro has led to a diagnosis to MS in a number of cases.
I have areas called hyperintensities or punctate foci that are in the periventricular region of my brain. Basically those are lesions of some type.
This can be a long road to a diagnosis of any kind wether it be MS or other disease.
sammyxx gave you some important advice
I was given the diagnosis of Fibro about 6 months ago even though I didn't meet the criteria for it. My suspicion was that the doctor needed something so that he could help me with the pain etc. Several doctors have now examined me and told me that I don't have it. It is interesting to note that Fibro has led to a diagnosis to MS in a number of cases.
I have areas called hyperintensities or punctate foci that are in the periventricular region of my brain. Basically those are lesions of some type.
This can be a long road to a diagnosis of any kind wether it be MS or other disease.
sammyxx gave you some important advice
Hi chippi and welcome to you!
Gosh, you too have been struggling with all sorts of neuro nasties for so long. It's so wearing isn't it?
I'm not sure I can add much light to your MRI results but white matter changes can mean many things - mostly the story we hear here is that doctors say that they can be ignored. From my understanding, WML (white matter lesions) are basically scars from injuries, much as bruises or cuts and bumps on skin. Apparently, it depends where these WML are as to how important they are. For example, I believe that MS often shows up with quite distinctive WML.
It could be that your WML are scars from your TIAs? How long did it take you to recover from them?
Generally speaking, the best advice we have learnt is to a) make a clear, concise one page chronology of all symptoms to present to the neuro and b) ask questions and keep asking until you get answers that satisfy you.
oh yes, and the really important third thing to remember is that you're not alone...Limboland conditions can make you feel so isolated anyway and that's often compounded by the vagueness (and even dismissive attitudes) of the doctors. But, as jibs says, you're in very good company!! ;-) There are loads of us suffering very similarly out here and fellow Limbolanders can be a tower of strength - bless us all!
Please do let us know how you get on with the neuro.
Again, welcome aboard...
sammyxx
Gosh, you too have been struggling with all sorts of neuro nasties for so long. It's so wearing isn't it?
I'm not sure I can add much light to your MRI results but white matter changes can mean many things - mostly the story we hear here is that doctors say that they can be ignored. From my understanding, WML (white matter lesions) are basically scars from injuries, much as bruises or cuts and bumps on skin. Apparently, it depends where these WML are as to how important they are. For example, I believe that MS often shows up with quite distinctive WML.
It could be that your WML are scars from your TIAs? How long did it take you to recover from them?
Generally speaking, the best advice we have learnt is to a) make a clear, concise one page chronology of all symptoms to present to the neuro and b) ask questions and keep asking until you get answers that satisfy you.
oh yes, and the really important third thing to remember is that you're not alone...Limboland conditions can make you feel so isolated anyway and that's often compounded by the vagueness (and even dismissive attitudes) of the doctors. But, as jibs says, you're in very good company!! ;-) There are loads of us suffering very similarly out here and fellow Limbolanders can be a tower of strength - bless us all!
Please do let us know how you get on with the neuro.
Again, welcome aboard...
sammyxx
Hi,
Well you certainly are not alone!!! I am sorry you have been going through these miserable symptoms for so long..I am not keen on MRI reports, I can't even make heads or tails of mine but maybe someone else with more knowledge and experience here will come along with some input.
when do you see your neurologist? I hope it is soon!!!!!
Please stay, this is a wonderful place to find support in the meantime...Limbo land stinks but I have met so many nice people....
Be Well Jibs
Well you certainly are not alone!!! I am sorry you have been going through these miserable symptoms for so long..I am not keen on MRI reports, I can't even make heads or tails of mine but maybe someone else with more knowledge and experience here will come along with some input.
when do you see your neurologist? I hope it is soon!!!!!
Please stay, this is a wonderful place to find support in the meantime...Limbo land stinks but I have met so many nice people....
Be Well Jibs
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