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    Old 09-05-2019, 11:28 AM   #1
    Blathanna77
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    Possible Infection

    Hi all again,

    Just wanted to update you guy's about the latest I have been told. I had some questions about my last Mri report and one of the radiologists who reported on my scan kindly told me that infective which is listed on my report is a broad term /medical jargon or medical language that means it is possible what they are seeing is possibly an infection that occurred at some point but impossible to say fr certain this is the cause in my case.

    Stability means no change from previous scans he also said. He urged I discuss these findings with my GP/Consultant to help with my future care.

    I don't have any consultant because I was discharged by the neurologists I have already seen. I remain very drowsy with stumbling and extreme tiredness.

    It makes sense to me if it were infection it could have caused what I have and it just stabilised itself and didn't do any further damage.

    The radiologist did say the doctor who requested the scan is the best person to interpret its findings that being a neurosurgeon who didn't really say very much other than no biopsy without a neurologist to ask for one. Biopsy never happened although I did try hard to no avail. I do wonder could it have helped to give closure on things but it's impossible to be certain infection is the cause so biopsy I don't know if it could or couldn't tell if infection did happen.

    I think this new information is helpful in that, it's possible this is why I am ill and should be under a consultant for my illness. I should be but don't know if I will be until I discuss these findings with my GP.

    If it were any of you guys, would you be concerned enough to have a consultant as part of your care? I mean if any of you were told it's possible an infection occurred at some point but impossible to know for certain and you were ill like me, would you want to be under a neurologist or just leave things as they are which is no improvement and like a zombie. There must be nothing that can be done only watch I don't know.

    I think the radiologist is trying to help me in saying to discuss the findings for my future care so that these findings may be helpful to my GP or consultant.

    Has the radiologist told me the answer I believe he has. I am so desperate to know for so long why I am in the state I am. I think this is why but then am I over reacting. All I know is I am like a drunkard as you all know but I don't think it's a mystery why. It's definitely not MS everyone told me. I don't know what happened but something definitely did happen and infection is possible so it's all just been very difficult my quest for answers. I probably will never know for certain unless something changes on my scan or my illness.

    It's all been going on so long and I am very tired of it but this possibility could be why I became ill and it makes sense so I think I should take it as being likely I picked up some sort of infection that stabilised itself.

    What do you think guy's, does it make sense infection is why I never got better. I don't know what to think. It's better than being told I lost my senses which is what was happening. I genuinely never felt my illness was anything other than neurological. A person knows when they are not well and falling around the place. For a while I felt like I was going crazy but there is another cause I always said that.

    What a five years I have put down. It's been unreal. I am no nut the radiologist letter has confirmed that to me.

     
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    Old 09-08-2019, 11:31 AM   #2
    Blathanna77
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    Concerned

    Hi

    My last post I explained that possible infection may be why I have the symptoms I do, although there is no certainty this is why I became ill.

    I am concerned about it because I never improved and remain like a drunkard, I am not sure what will happen regarding my future care or if it can worsen.

    I also don't see why I have been discharged by all neurologists given I am so unwell. It's all very confusing and frustrating. There is no way I am ill for nothing.

    I have severe drowsiness which is causing all sorts of problems for me and if infection was possible at some point, then that may well have caused damage so it makes sense to me that's all I am saying. I thought I had MS for so long because that's what I was being tested for. I don't know if infection can bring on something but if a radiologist says what they are seeing could be infection that occurred at some point, then the lesions must have features of infection.

    I don't know why though I have been diagnosed with somataform disorder when infection may have played a part . I am all over the shop and it's very difficult for me to understand my illness is a psychiatric one when there is talk of possible infection and to discuss these findings for my future care.

    Can any of you relate to my difficulties in understanding my illness is being put down to psychiatric disorders and anti psychotic medicine prescribed that made the drowsiness worse and emotionally drove me crazy as well.

    I don't know what to make of it all. I mean if infection happened, then I could very well be ill due to this more than a somataform disorder etc...

    I've had no breakthrough in the certainty of my illness except that it's psychological. Yet my scans are not normal either. What am I to think? It's just a total nightmare.

    Thanks for your thoughts.

     
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    Old 09-08-2019, 03:24 PM   #3
    Blathanna77
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    Sorry

    Hi

    Sorry if I have upset anyone or anything like that. I just wanted to update you guys on what's been happening.

    I perhaps am asking too much of you to give your thoughts.

    I understand you are not medical professionals so you can't give me any help in understanding this and that.

    I am just wondering so many things because I am being told now that infection may have happened so I am obviously concerned by that due to my symptoms and no improvement.

    Hopefully things don't get worse. Thanks to you all over the years for your help and patience with me. Same to the docs who dealt with me. I just think my illness is a neurological because I am like a drunkard and very very tired. The drowsiness is awful and my head feels achy a lot.

    I don't know what it is for sure and it's horrible whatever it is so just have to bear it and looks like nothing can be done. I am not even under a consultant anymore other than a psychiatrist and I really don't feel that's where I should be attending for my symptoms. Am I so wrong I don't know that's the problem. If I am ill this long and it is psychological, then I am truly after losing my senses. I really don't know guys what's happened to me. The radiologist telling me possible infection and care for the future has confused me yet again but also has put a doubt where it's psychological. That's what I think.

    Anyway sorry if I am being a pain.

     
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    Old 09-14-2019, 08:57 AM   #4
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    Re: Sorry

    Hi...have you seen a rheumatologist as of yet? Or an infectious disease specialist or an internist? And you've had ct of your neck?
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    Old 09-14-2019, 01:56 PM   #5
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    Re: Sorry

    Part of why you haven't been answered much is that most of us are in the US and the "consultant" model is not done here. And if doctor should dismiss you, that pretty much means he fired you as a patient. Be that as it may, I would see a neurologist...of course I can pick the one I would want to see which you probably can't but that's the direction I would go.

     
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    Old 09-14-2019, 02:56 PM   #6
    Blathanna77
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    Re: Sorry

    Quote:
    Originally Posted by quincy View Post
    Hi...have you seen a rheumatologist as of yet? Or an infectious disease specialist or an internist? And you've had ct of your neck?
    q
    Hi,

    I did see a rheumatologist way back and he found nothing that he could relate my symptoms to. I did have CT of my brain, but not my neck. I am on the waiting list to see yet another neurologist my last neurologist having referred me on to a her. She is part of the neurology team where I saw my last neurologist.

    I don't know what she will make of my illness and scans, but several neurologists have found nothing they can come to a conclusion on in my case.

    The radiologist says, when I queried infective on my mri report that it is possible infection occurred at some point, but impossible to know for certain if this is the cause in my case. The findings he said should be discussed with my GP or Consultant for my future care thats all I know for now.

    I spoke to my GP on Friday and he referred to whatever it is to a tennis ball, an orange or a concrete ball, who knows is what he was saying what it is and that the way forward is to see this other neurologist whom I am waiting to see since last April, but so far no appointment yet.

    Maybe an infectious specialist may be the way to go, I don't know. Several neurologists have told me, it isn't MS. Infective is a new possibility listed following seeing a neurosurgeon who also works alongside my old neurologist and the new one I am to see, so it's all going back and forth and I asked the radiologists who reported infective on my report to help me understand the meaning of it and stability which he said means no change.

    It's all just bizarre that's all I know. I am ill and it's looking like there's no way of knowing what these abnormalities are, just that there isn't change and they can be from infection but no certainty in that either.

    I really don't know what happened to me and may never know for sure.

    Thanks for your thoughts.

     
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    Old 09-14-2019, 05:39 PM   #7
    Blathanna77
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    Re: Sorry

    Quote:
    Originally Posted by Titchou View Post
    Part of why you haven't been answered much is that most of us are in the US and the "consultant" model is not done here. And if doctor should dismiss you, that pretty much means he fired you as a patient. Be that as it may, I would see a neurologist...of course I can pick the one I would want to see which you probably can't but that's the direction I would go.
    Hi,
    Yes I understand most of you are in the US. I have seen several neurologists, none of which have any answers for my illness. I can see any neurologist if I request which I did.

    I am on the waiting list to see another neurologist for yet another opinion but it's all not going anywhere so I don't know if she will have anything further to add than all the others before her.

    If infection was possible at some point, as the radiologist said but no way of knowing for certain, it is something that could explain why I am ill should that have occurred and then stabilized. I don't know.

    All I want is to know why I am ill. There has been no improvement in my symptoms and I am like a drunkward so something caused this but no certainty as to what. If infection at some point then it may be why I am ill who knows.

    Will wait to see what the neurologist says. Infectious Diseases maybe be another avenue to explore I will ask her if she too can't come to any conclusions.

    Thanks for your thoughts

     
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    Old 09-15-2019, 10:20 AM   #8
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    Re: Sorry

    Hi...interesting anology regarding the orange, tennis/concrete ball, maybe the meaning is that it's a hard mass?. Do you know where in the brain it is, and is it acting in a way that could be affecting the workings of that area of the brain/ connections to the body?

    In truth, I'd also be wanting to know the what and why, but asking specifics might be more helpful.

    I would still ask for a scan of your neck, because I can relate to feelings of being totally off some days... and I know it's from my neck.
    If it is your neck, then it's possible massage, accupuncture, etc might be of help?

    Do you know the name of the neurologist you're waiting to see? You could call and ask where on the list you are...and the reason is that some get lost in the shuffle.

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    Old 09-15-2019, 01:30 PM   #9
    Blathanna77
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    Re: Sorry

    Quote:
    Originally Posted by quincy View Post
    Hi...interesting anology regarding the orange, tennis/concrete ball, maybe the meaning is that it's a hard mass?. Do you know where in the brain it is, and is it acting in a way that could be affecting the workings of that area of the brain/ connections to the body?

    In truth, I'd also be wanting to know the what and why, but asking specifics might be more helpful.

    I would still ask for a scan of your neck, because I can relate to feelings of being totally off some days... and I know it's from my neck.
    If it is your neck, then it's possible massage, accupuncture, etc might be of help?

    Do you know the name of the neurologist you're waiting to see? You could call and ask where on the list you are...and the reason is that some get lost in the shuffle.

    q
    Hi,

    I think the analogy my GP was making is that it can be anything. He was referring to infective I think. The tennis ball, orange and concrete ball he was referring to is regarding they don't know what it is, it could be all sorts of stuff from infective to small vessel disease.

    All I know is the radiologist said possible infection could have occurred but no certainty that is the cause in this case. He has sent another report to my GP to progress my care. I have not seen this report yet.

    I don't think it's a hard mass because they would have said so. All neurologists I have seen all said I don't have MS. When first I got ill in 2014, this and lymes was what my neurologist at the time was checking for and because he ruled out MS and because I am ill, I went to several other neurologists thinking perhaps I may have MS because my symptoms are similar to MS symptoms.

    I did kind of get stuck in my head I have MS and because nothing else was found, I felt it could be and the neurologists all said it isn't. I am frustrated and feel the abnormalities seen on my Mri are from something that hasnt changed but caused the symptoms I have nonetheless.

    Infective is a new possibility listed on my last two reports but these scans were done through a neurosurgeon so maybe that's why. The Radiologist said it's medical jargon and the best people to interpret my reports are the consultants who asked for the scans.

    Their interpretation was that it doesn't mean if something is listed a person has that particular illness. I asked if the radiologists who reported on my scan if they could explain to me why infective and stability are in my report and the radiologist two months later wrote to me saying what he did.

    The lesions, spots, abnormalities as they have been referred to are in both frontal lobes numerous in numbers. One particular whatever it is, I asked the neurosurgeon about because it looked quite big and very noticeable, we were at that time discussing biopsy as I had gone to see him to ask if it would be possible to do biopsy to try and get more information. Anyway about that spot, he said that it is in a place responsible for movement so he would not be going near that but the frontal area only.

    This was way back and Biopsy never came about anyway because I was the only one asking for it and it was not an option due to putting me at risk for a 50/50 shot of finding an answer.

    I remain like a drunkard with all sorts of daily difficulties. I live in Ireland and have seen a lot of neurologists as I said and it's the same old story, we have no answer for you and it isn't MS

    I have been diagnosed with a somataform disorder for which all my symptoms fit that disorder my psychiatrists told me. People have ended up in wheelchairs I was told with this disorder. I am not very accepting of this being the cause of my illness and I don't agree I should be taking anti psychotic medicine but am currently taking 300mg daily of Quetiapine which I want to be weaned off when I next talk to my psychiatrist. He is certain I am suffering from this disorder and am bordering on delusional because I thought I may be suffering from MS, because I was disagreeing with the neurologists.

    Sorry for such a long post, but there is so many things in the mix, I don't know whether I am coming or going. I think the radiologists letter throws a spanner in the works with regard to my illness being a psychiatric one if its possible infection occurred. It's all just very frustrating and all very vague. I don't think either infective would be listed if what they are seeing is not showing any characteristics of such a thing but it looks as if there are no characteristics to say what it is so then we have me being ill and no certainty as to what these spots are made up of. There just there and not changing.

    Thanks for your thoughts. Trying to explain it all , I could write a book on so sorry for the long reply to you quincy.

     
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    Old 09-16-2019, 11:48 AM   #10
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    Re: Sorry

    Hi....you clarified about where the lesion (for word usage) areas are for me, and I now understand the risk of the doctor not doing the biopsies.

    I personally wouldn't be convinced of the label somataform disorder, especially from a psychiatrist, because you DO have lesions in the area of your brain that affects movement.

    Is it possible you could see a movement disorders specialist? As well as infectious disease specialist?

    I realise that some may see a continued search for answers as futile....but because your movement is specifically affected with no answers, seeking info out of the box may be an avenue to try. Spinal possibilities are an option if it's never been investigated.

    Have you had muscle and nerve testing done? Have you had heavy metal testing done? Allergies?

    Hang tough...think about that book, lol. Keep your records concise and questions for further appointments.

    Hugs,
    q
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    Old 09-16-2019, 02:43 PM   #11
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    Re: Sorry

    Quote:
    Originally Posted by quincy View Post
    Hi....you clarified about where the lesion (for word usage) areas are for me, and I now understand the risk of the doctor not doing the biopsies.

    I personally wouldn't be convinced of the label somataform disorder, especially from a psychiatrist, because you DO have lesions in the area of your brain that affects movement.

    Is it possible you could see a movement disorders specialist? As well as infectious disease specialist?

    I realise that some may see a continued search for answers as futile....but because your movement is specifically affected with no answers, seeking info out of the box may be an avenue to try. Spinal possibilities are an option if it's never been investigated.

    Have you had muscle and nerve testing done? Have you had heavy metal testing done? Allergies?

    Hang tough...think about that book, lol. Keep your records concise and questions for further appointments.

    Hugs,
    q
    Many thanks for your thoughts q. I did have SEP's I think that's for nerve and muscles and the results were normal. That's back in 2015. I don't know what heavy metal testing is, but I can say it to the new neurologist do you think.?

    Infectious Diseases I will ask my GP if he will refer me. I don't know if infectious diseases specialists are many in Ireland if any but I will definitely ask.

    The follow up report was a mistake. Radiology meant they sent a copy of the radiologists letter which he sent me to my GP.

    I have not heard about any appointment yet to see the new neurologist and apparently takes several months to see her privately so am waiting for that.

    I don't think somataform disorder is the cause of my symptoms. The psychiatrist is certain it is. I was referred to him by my last neurologist.


    I have awful symptoms. I am not able to walk far or do things properly. My head feels like all fuzzy and full. I do have skin lesions as well so I just don't know if I am harbouring something. I understand skin lesions are different to brain lesions my GP told me that, but the fact infection may have occurred at some point on my brain but no way of knowing for certain if that's the cause what am I take from that I don't know.

    My GP says the best way forward is to see this new neurologist. Whether she can do anything more, I am not holding out much hope because several before her had no answers and MS it definitely is not by all accounts so too infection my last neurologist said I don't have. The radiologist said though infection at some point possibly so is this crucial or means nothing. I hope I get to know.


    Hugs to you too q. I will let you know about the infectious diseases specialist once I ask my GP. Maybe that's the way to go or neurology.

     
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    Old 09-16-2019, 07:27 PM   #12
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    Re: Sorry

    What type of skin lesions and where? No, not the same as brain lesions....wondering if autoimmune. Is dermatologist on your list? I don't remember if you saw rheumatologist..

    Ask questions....just because...some excess of metals can cause neurologic/muscular symptoms as well as skin.

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    Old 09-18-2019, 01:19 PM   #13
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    Re: Sorry

    Quote:
    Originally Posted by quincy View Post
    What type of skin lesions and where? No, not the same as brain lesions....wondering if autoimmune. Is dermatologist on your list? I don't remember if you saw rheumatologist..

    Ask questions....just because...some excess of metals can cause neurologic/muscular symptoms as well as skin.

    q
    Hi q,

    Thanks for letting me know about the metal. I have mainly breast and underarm lesions and my thigh recently I got a real bad one. Antibiotics don't seem to clear them. They do get infected.

    I am to get them removed by a breast surgeon who did say no guarantee they will not come back. I have sweat gland disease she said. Hydranitits, can't remember the spelling. She did remove from under my arms before, but they came back.

    I may be harbouring some type of infection that just doesn't fully clear, Don't know. I did see a dermatologist years ago for something else on my toe, some type of lesion. I saw a rheumatologist, he said my symptoms are not due to any rheumatoid cause.

    I definitely think I will ask my GP to refer me to an infectious disease specialist, just to get an opinion. I wonder as well if I did get an infection on my brain, then stabilised. Who knows. I have this constant drowsiness and awful heavy fluy head. Zero energy as well. I don't know what to make of it q , It's all very bizarre. My symptoms are not improving and its really difficult to focus as well because of the fullness in my head. When I walk, the wooziness gets worse and I am banging into things and people with my balance going off. Neurology say it's not neurological, yet my report is not a normal report so it's all just simmering away, almost like it doesn't matter the way I am, but should my scans change, then it may matter is what I am getting from going to neurologists, but that doesn't mean whatever it is didn't happen which is all I want to know.

    I do think what the radiologist wrote is important and should be taken seriously. If what the radiologists are seeing is from possible infection at some point, but impossible to know for certain, then taking my symptoms into account what else is it if it's not MS. My report also lists, Migrainous, small vessel disease, inflammatory,infective. Medical Jargon is what the radiologist referred to infective as well, but I have trouble with how infective and all the others can all look characteristics of each other? So these are all possibilities and MS is ruled out so what if indeed infection did happen, are my symptoms the type a person would have should infection have occurred.

    I will let you know if my gp will refer me to infectious disease specialist.

    Hugs

     
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    Old 09-18-2019, 01:30 PM   #14
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    Re: Possible Infection

    Blathana, An infection or virus can cause allot of the symptoms that you had, but infections and viruses show up in blood work... they are very easy to identify, even if they dont know which one, a broad spectrum antibiotic will usually take care of infection and an antiviral can take care of some virus's; but not all. The MRI would show if you had any sort of brain virus which you clearly do not have.

    You are asking if you should have a neurologist... no. What about a general doctor? Do you have one of those? You need someone to oversee your general health as well as your anxiety over your health... and that person can decide if you need to see a neurologist in the future. No neuro is going to do anything for you without some sort of neurological diagnosis.

    You asked if an infection could cause your symptoms that you never got better from. Its not likely.....infections run their course with or without drugs for them. My husband has never taken a pill since he was 18 years old (he is 50 now) and he just lets his body fight off things and run their course...its his choice. I much prefer to take a pill and get rid of it! But any infection will go away on its own eventually unless it is so serious that you need to be hospitalized and with the tests you have had, if it was that serious, they would have found something.

    My guess is this will show itself when it is ready...and you worrying about it is making you hyper aware...it appears to be all you are focused on... please get yourself a trusted general practitioner who can work with you to eliminate things and help you get control over your health again.
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    Old 09-18-2019, 02:57 PM   #15
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    Re: Possible Infection

    Im just going to add based in the balance and heaviness part... have you seen an ent who specialises in balance disorders. And did the head MRI include your ears?

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