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    Old 04-10-2019, 06:43 AM   #16
    yayagirl
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    Re: Brain Biopsy

    That seems like a great idea, Blathanna.

    I hope you will be at peace no matter what the answer turns out to be.
    Confusion is certainly not fun.

    Hugs,
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    Old 04-10-2019, 10:56 AM   #17
    Blathanna77
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    Re: Brain Biopsy

    Quote:
    Originally Posted by yayagirl View Post
    That seems like a great idea, Blathanna.

    I hope you will be at peace no matter what the answer turns out to be.
    Confusion is certainly not fun.

    Hugs,
    yayagirl,

    Thanks for your reply. My GP is going to write to the neurosurgeon to get me an appointment to talk about the meaning of the word infective.

    She told me infective means a process, that's all she knows, but would like to know in what context this word is being used in my report and if that is why I am ill.

    She did also say, that my neurologist is sure I do not have an Infection. I am to be reassured by that. Things are stable since 2014, and I should be happy with that as well.

    Of course I am happy whatever it is is stable and not progressing. I just do not know what it is that is being referred to as Infective. I can hazard a guess, that I once had an infection, that stabilized and the effects are what I am suffering. If it is a process, then I don't know does it mean, a process began then stopped, and it stopped and seen as it is five years without processing further, there is no concern that it will. But I would like to know the meaning obviously and if it is why I became ill. If they can see a process happening, then surely they can clarify what that process is, as in type and name of whatever process is going on. I told you that a few years back, a neurologist told me when I was asking what does he think it is, and he told me a process may be happening, that's all he said.

    Too be totally honest, if this process is why I am ill, the search for answers is over, and I will be very glad for it to be over because I cannot make head or tail of infective, process, stable, no progression. These are words, that would not be in my report, should everything be normal, so its like will someone please just tell me what it all means, so I can have closure and stop searching. I'm ill for a reason, but these words, mean something must have been seen to be abnormal on my brain, but what is the 64 million dollar question?

    Is it possible do you know yayagirl, if I have a psychiatric illness it would show as an infective process on my scan? I'm trying also to understand if my neurologist is saying there is no infection, to the word infective, and I do not have a particular neurological disorder, then psychiatrists are saying I have these different psychiatric disorders, is infective a word that would be used on a brain MRI report, should a psychiatric illness be the cause? I do not understand that either if that was the case because I feel generally so unwell, it doesn't feel at all like mental health illness. I can't get the connection if that were the case, because the word infective is potential to infect, my GP says it means a process, psychiatric illness doesn't infect, I tell you yayagirl, its the most unusual case, mine, its like a maze. I think I am getting a step further, only to have to go 10 steps back.

    I asked for biopsy, an MRI was done by the neurosurgeon, infective is a new listing on that report, and never in any previous MRI reports, so either they are telling me the answer, so I stop trying to get biopsy, and biopsy would tell no more, or its a random word of no significance, but that makes no sense either. This word alone could be the missing piece of the puzzle. It could be the answer. My neurologist and neurosurgeon could be trying to help in a roundabout way that this is the answer, nothing can be done and leave it at that. If that's the case, I am so glad they are my doctors. I feel this word infective is only in my report because my neurologist knew how passionate I am in trying to get an answer, he didn't want me pursuing biopsy, and all is OK, but this I don't know. Im just wondering if that's why infective is in my report. Its a word never used before, until I was pursuing biopsy.

    Can you yayagirl, make anything out of it, do you think infective is why I am ill, or is just another word, no meaning or significance to my illness. Am I chasing yet another dead duck, am I thinking all wrongly or am I making sense. I don't know what to think. Its a terrible way to be having to try and figure out words, meanings, whether its the answer or not, the word infective is boggling, and it could all mean nothing as well, this is the way things are since 2014, I cannot get sense made for my illness.

    Hopefully my neurosurgeon will make sense of the word infective, if its in or out regarding my illness.

    Hugs to you too. I will keep you posted. I appreciate your thoughts, thanks.

     
    Old 04-11-2019, 09:29 AM   #18
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    Re: Brain Biopsy

    Dear Blathanna,

    Not everything in life can be fully defined. Infective is just a word that someone typed that was not connected to other words. It may have been a typo. In fact, the person that typed it may not even remember typing it.

    Knowing what was on the mind of the person that typed the word is not going to change your life.

    I bet there are things you need to be doing to serve your health. Those things are worth learning and concentrating on.

    Blessings,
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    Old 04-11-2019, 02:24 PM   #19
    Blathanna77
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    Re: Brain Biopsy

    yayagirl,

    I am trying to figure out why that word is in my report. It is just that it is listed with small vessel disease, inflammation. If it is not significant to my symptoms hopefully the neurosurgeon will clarify. The radiologist who did my report, is staff at the same hospital that my neurologist and neurosurgeon work. I had the MRI done at that hospital as well.

    If its a typo, hopefully they can clarify that as well. My GP will be writing to my neurosurgeon. Hopefully he will ask the radiologist if the word was a typo, or maybe they can look at my scan again, because I would obviously like to know if it is in my report for something or nothing. If its not meant to be in report at all, and is a typo I suppose they wouldn't mind to remove it.

    It's just that it is not a word, that I am sure is meant to be in my report or not. I just want more information about it that's all. It could be relevant or not to my symptoms. I would say my GP will find out more.

    The other thing is awhile back, I went for a second opinion, following my first neurologist. The second neurologist, had a look at the first neurologist's MRI. He told me my prognosis was good. He then ordered his own MRI. That report came back, but on it the radiologist said, he had no clinical information or question as to why this MRI was ordered or previous imaging for comparison. He noted that post trauma, or small vessel disease. A 3mm abnormality were noted.

    That's my second MRI report. I just didn't understand then, why no information was given to the radiologist by the second neurologist I went to see. I then asked the hospital where I had that MRI done, would they mind if I dropped down my first MRI, they said no problem, the radiologist who reported on the second MRI would view and do an addendum. He didn't do the addendum so, that was the end of that. He later wrote to me and told me that if I had questions about my first MRI, they would have to be asked to my first neurologist. The radiologist said, he cannot comment on my first MRI, even though he did compare it to my second one.

    My first MRI noted , 19 lesions, largest measuring 6.6mm, the remainder between 2-3mm. I do not have a particular neurological disorder, they were checking for. In the end my first neurologist, said I may have picked up a virus.

    I'm left with whatever happened, continually drowsy and fluy, five years on and still drowsy , feeling very generally unwell. A continuous sickly feeling in my head, Stumbling full feeling in my head, severe fatigue. Headaches, and I've no idea why.

    Its ongoing and very frustrating. Things are just not making sense. We will wait and see what the neurosurgeon says about infective.

    Thanks for your reply yayagirl.

     
    Old 04-17-2019, 10:11 AM   #20
    Blathanna77
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    Latest Brain MRI Report

    Hi,

    Following my last post, I managed to find my last MRI report, from 2017. It says, comparison made with prior study dating back to 2012. The neurosurgeon requested this 2017 MRI. I did give him my all my other MRIs from 2014, through to 2016 also, but they are not included in the comparison. I did have an MRI in 2012, at the same hospital my neurosurgeon now works, so maybe he didn't want my most up to date scans compared only the 2012 one, but I became very unwell in 2014 and had many scans since then.

    My 2017, report says,

    There is no hydrocephalus, midline shift or space occupying mass. There is no extra axial collection or intraparenchymal hemorrhage.

    There are scattered T2 hyper intense foci in the deep cerebral white matter bilaterally, grossly stable in appearance allowing for slight differences in slice selection. No cortical infarct. No abnormal diffusion restriction. No lesions seen in the corpus callosum, brainstem or cerebellum.

    Impression. Mild Cerebral white matter disease. The differential diagnosis is broad including, infective, inflammatory, migrainous, and vascular aetiologies,but without definite interval change allowing for differences in slice selection

    No one explained to me if any of these impressions are related to my symptoms. As I said in my previous post, infective was never in any of my reports, while the others were. I wonder if infective is a word put in by mistake. I'm trying to get it clarified but its kind of difficult.

    I haven't got a clue why I am so unwell and all these this and that in my reports, seem to mean nothing at all to any neurologist I have seen. My now neurologist hasn't explained what infective means either. Its really very frustrating. Its like whatever is listed means nothing or why I am ill.

    What should I do, just forget all the reports and no answer for my illness, suffer on and be given no explanation. Take what the psychiatrists are advising, which I don't see is of any help but making me more drowsy. I honestly don't know what is going on. Its a nightmare. I don't think at all what I have wrong is psychiatric. I am not getting my reports, the feedback on them is very vague, and it is I think all baffling. Its not adding up at all for me and there isn't much willingness to explain things in my reports.

    Anyone would want to know what infective means , and can it be ruled in or out. Can they do a test or something to rule in or out infective do any of you know? Its meaning I do want to know because its in my report.

    Where things are at now is I know nothing, other than words in a report that either do or don't have a relation to my illness. I don't get why I am being left hanging. That's neither here or there. If something is written in a report and I don't understand if it is meant to be there or not, then my neurosurgeon or neurologist should tell me or the radiologist. Surely one of them can explain it.

    Thanks for reading my post and if any of you can make anything out of my report, would appreciate your thoughts. I have not had an MRI since my 2017 one.

     
    Old 04-18-2019, 08:35 AM   #21
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    Re: Brain Biopsy

    I'm going to ask you something you may think is out in left field, but do you have any root canal's in your mouth? They can cause all kinds of problems, and if you do I urge you to do some research on them and get them removed.

     
    Old 04-18-2019, 11:07 AM   #22
    Blathanna77
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    Re: Brain Biopsy

    Quote:
    Originally Posted by rosequartz View Post
    I'm going to ask you something you may think is out in left field, but do you have any root canal's in your mouth? They can cause all kinds of problems, and if you do I urge you to do some research on them and get them removed.
    Hi and thanks for the information. I do not have root canals I don't think. Last time I was at dentist, he just did a filling and all was fine. I go to my dentist once a year. He hasn't found any issues. I will mention about root canals to him.

    I'm just wondering about infective in my brain MRI report. I wish someone would explain what it means. Its very vague what I've been told. I do not have an infection is what my neurologist told me. Infective my GP says means a process, that's all she knows about it. Am trying to get more information about it.

    There's a lot of different words in my reports, but they seem to be of no relevance at all to my symptoms. My neurologist says there is difficulty coming to a diagnosis in my case. If he diagnosis something, it may not be the right diagnosis. That's what he was saying more or less at my last appointment.

    There seems to be something he is thinking but I don't know at all what it is he is thinking of that's difficult to diagnose. He did day I do not have a particular disorder that for a long time, I was thinking it could be, and my neurologist was kind of pointing in that direction as well, but isn't now, nor did any if the second opinions think it was this particular disease.

    Will meet with my neurosurgeon at the end of May. He may be able to explain things. Will have an up to date MRI first before I see him. The feedback I have been getting is very little. Certainly there is no clear indication as to what is causing my symptoms yet.

    Its all just very frustrating because if my symptoms are anything to go by, there is an answer I feel but it isn't clear as to what this is. The lesions are stable, but the type of lesions, inflammatory, infective etc.., is where the difficulty seems to be. I asked for biopsy in the hope it could provide more info or distinguish what type of process, but that didn't go ahead as I hoped. Its on the back burner for now. I will see what my neurosurgeon says in May. All depending I guess on my next MRI whether he will have anything further to help have to wait and see.

     
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    Old 04-19-2019, 07:46 AM   #23
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    Re: Brain Biopsy

    Dear Blathanna,

    Why don't you list the symptoms that have been bothering you?
    Then we can make some guesses about what is going on.

    List your physical symptoms ~ not test results or reports.
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    Old 04-19-2019, 02:03 PM   #24
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    Re: Brain Biopsy

    yayagirl,

    Yes sorry that's what I should have done. List my symptoms. Since 2014, I feel flu in my head daily, with drowsiness and drunkenness. It all began with real bad morning headaches and numbness all over. I was feeling generally unwell with the headaches. I started to fall to my right side, and became clumsy and awkward. My spacial awareness got bad as well. I definitely didn't feel myself at all.

    To this day, I have that awful fluy, drowsiness in my head, fullness and simple things take a lot out of me. Everything is affected like, walking. When I walk, I get severe leg pain, which requires me to stop, and go, and at a very slow pace. I have severe fatigue, I never feel refreshed or well with this terrible feeling in my head. Because of it, I stumble and stagger, and hit off things as well. My head feels like cotton wool, fuzzy fluy, foggy. I'm calling people by the wrong names as well, it hurts my head to think and organise things, I have become so slow.

    The current diagnosis for my symptoms is Somataform Disorder. All the neurologist's I have seen, do not know why I am ill.

    My old GP, was always baffled why I was seeing two on finger testing. This she said isn't normal. There has been various neurological exam findings, by different neurologist's, such as, altered heel to toe movements, hypereflexia in both upper and lower limbs with spread to supernator jerks, nystagmus, toes that go up.

    I do not know the meaning of the word infective, and told you my GP us writing to the neurosurgeon. Well she did and I read what she wrote. She didn't list my symptoms, and said, I presented distressed and agitated demanding an explanation regarding my last MRI report. She said I was focused on the word infective. I did not demand an explanation, I simply asked what the word means, and that it is frustrating all the going back and forth. She asks, in her letter, she wonders was there a change in the report and that I had a copy at home. She goes on to say, as you know L, has a somataform disorder and unfortunately does not wish to engage with the mental health services. I tried what they asked of me, took their medications since last summer and ended up in a real bad state, so I do not want to be taking the meds and because I do not want to take the meds, I am wasting my time, attending I was told my psychiatrist.

    My GP then goes on to say to the neurosurgeon, that I seem to be interpreteing that there is a missed cause for my condition. She then asks with a question mark, if the neurosurgeon can shed light on his report. He requested my last MRI, Tue report which I posted here recently.

    I am keen to explore the role of Biopsy and his interpretation of this MRI report. That's basically what my GP wrote to my neurosurgeon.

    I don't know if its just me or what, but I am not getting a lot of what is going on. I fail to see my diagnosis is down to a somataform disorder. I feel genuinely that my illness is neurological, it could be something rare, or something they may have some idea what it is, but if I ask questions it's as if I am not to ask. They would rather I not ask, but then that doesn't mean the oddities I see are not valid, I didn't put the oddities there, so they simply do not want me digging but that's not me, I like to get the bottom of things, especially when I am ill. I mean anyone would try to. It is just the way I am. If something doesn't add up or feel right, I ask questions and if they see that as being a pain in the neck, I have to keep pressing because I know every time I do, more oddities arise and that to me isn't helping the situation but making it a whole lot worse. There should not be so many oddities is all I am saying. Infective pops up in my report when I was pressing for biopsy, never in any other reports. What am I to think, don't ask what it means, I am not to find it odd, its just a word no need to worry, that's all very well if I'm not ill but I am, and any new information I am going to think, this may be why. Is there something wrong with me if I think that, or want answers. I don't see anything wrong with standing my ground on trying to get more information for my illness.

    Am I all wrong here? Is it psychiatric and I've lost all reasoning, I don't think so, my gut is really saying it is something else, so I'm sticking to my gut that I am ill due to a neurological issue, that I believe they may have an idea what it is. It stabilized so I don't know what that means either. Whatever it is, I want to know.

     
    Old 04-19-2019, 09:07 PM   #25
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    Re: Brain Biopsy

    Dear Blathanna,

    The word Somatism or Somatic refers to the effect that emotions and thoughts have on the body. Fear can cause us to have physical symptoms. Joy and Hope also make us have physical symptoms.

    So, what we dwell on can make us well and adjusted or in pain and sick. What might start from a temporary virus can turn into a huge fear that causes us pain and other physical symptoms. That is called Somatism.

    For that reason we need to learn to have an attitude of hope and joy, and not hold onto fear, EVEN and ESPECIALLY if we get a disease.

    Here is some scientific information about your condition ~
    (copy and paste the URL onto a search engine)

    https://www.mayoclinic.org/diseases-conditions/somatic-symptom-disorder/symptoms-causes/syc-20377776

    Your current doctors seem to have done all they can, so perhaps you can contact the Mayo clinic and find appropriate doctors that can help. That kind of doctor is who to tell your symptoms to.

    We, here, are just other patients, like you, all with our own set of health issues.
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    Old 04-20-2019, 03:30 PM   #26
    Blathanna77
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    Re: Brain Biopsy

    yayagirl,

    Thank you for the link. I think my symptoms are neurological. I am going to see my neurosurgeon in May to talk about biopsy and the meaning of the word infective.

    I was given hope by both my neurosurgeon and neurologist for biopsy but then that all changed and I am frustrated about that. I am more frustrated than anything else because I have to try and get more information if possible and I think biopsy is something that could help.

    Its 50/50 my neurosurgeon said, could get more information or not, so it is worth a shot. I just wish they would stick to what they say instead of dragging on and on.

    I think I am ill enough for more to be done. If the docs are not sure what is wrong then for them as much as me, a biopsy could shed light. I don't see anything wrong with trying to get more information especially when there is a 50% chance I could.

    I'll just wait and see what my next MRI report says and what my neurosurgeon thinks. That's all I can do for now. Wait and see.

    I was just wondering if anyone here would know what infective could mean and I know everyone has their own health issues here. Sorry if I am going on.

    Thanks again for your thoughts yayagirl.

     
    Old 04-21-2019, 09:06 PM   #27
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    Re: Brain Biopsy

    Dear Blathanna,

    Hon, brain infection usually causes death within three to seven days.

    If you had an infection in the brain it would have shown up in blood work by now. I sincerely hope you read that information on the MAYO Clinic website.

    I hope that you will get some mental and emotional health support. It would make you feel better.

    Hugs,
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