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    Old 03-28-2019, 10:22 AM   #16
    yayagirl
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    Re: Numb Thumb

    Dear Blathanna

    The word infective by itself doesn't really explain anything at all.
    If caused by infection the headache would not be only in the morning. I am fine with my kids moving on, too, and happy they are doing well, but it affects me that they are gone.
    I have some depression from it.

    Daily morning headaches can be from any number of causes...a few are sleeping posture, wrong pillow, bottled up emotion, too much heat in the room, odors, new carpet, poor air circulation, there is a long list of possibilities.

    If thyroid replacement is insufficient or too high that can cause havoc. On going symptoms can be from a huge spectrum of reasons including from stuffed emotions.

    Are you physically active?
    What do you do for exercise?
    I think we have to get involved with life around us.
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    Old 03-28-2019, 10:26 AM   #17
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    Re: Numb Thumb

    Blathanna....what biopsy are you wanting to have done?

    I've been using Effexor XR for many years, and for me it's been the best med.

    The reason I asked about your neck....it can also cause the full headed feelings. I experience them daily. Sinus issues as well and general sensitivities to environment.
    Add medications that intensify....it's a double whammy.

    Your statement about symptoms intensifying depression and anxiety is absolute fact. Many doctors want to help the obvious...increase these meds. I refused to increase my antidepressant...my statement was that I'm aware of my depression and anxiety and being aware of what's happening is fine. The other unanswered issues is what drives me crazy and makes it worse.

    I, as well have many issues going on. Distraction doesn't make the reality go away.

    I hope the neurologist offers further testing. Nerve conducting for sure. Has massage or accupuncture or TENS been suggested?
    Has talk therapy been offered to you?

    q
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    Old 03-28-2019, 01:08 PM   #18
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    Re: Numb Thumb

    Quote:
    Originally Posted by yayagirl View Post
    Dear Blathanna

    The word infective by itself doesn't really explain anything at all.
    If caused by infection the headache would not be only in the morning. I am fine with my kids moving on, too, and happy they are doing well, but it affects me that they are gone.
    I have some depression from it.

    Daily morning headaches can be from any number of causes...a few are sleeping posture, wrong pillow, bottled up emotion, too much heat in the room, odors, new carpet, poor air circulation, there is a long list of possibilities.

    If thyroid replacement is insufficient or too high that can cause havoc. On going symptoms can be from a huge spectrum of reasons including from stuffed emotions.

    Are you physically active?
    What do you do for exercise?
    I think we have to get involved with life around us.
    yayagirl,

    Thanks for your reply. The headaches were in 2014. The word infective only arose in my last MRI report, last year when I asked for biopsy. The neurosurgeon did a brain MRI and infective was listed. All previous MRI reports didn't have that word. I was concerned to see it listed and am still none the wiser as to whether it is of significance for my symptoms.

    It just came out of nowhere, I was really pushing for biopsy of my brain and like I told you, it seemed my neurologist was going to recommend it last time I saw him. He did so many bloods and told me he would write to the neurosurgeon, I taking it that day as he would be more than likely allowing it in my case. The neurosurgeon had no problem doing the biopsy and told me brain biopsy is not as bad as years ago and that I would be fine. He told me he had no problem doing it. It then got a bit messy. There was then a change in the neurosurgeon going ahead, because he said who would he give the results to. He said he would be more worried about I having a good neurologist for after the procedure than he would about the biopsy itself. At that time myself and my neurologist were having trouble with going ahead with it or not, so things were left that my neurologist was against biopsy therefore my neurosurgeon could not proceed. What I will say is that when I asked about biopsy over a year ago to my neurologist before ever seeing the neurosurgeon, my neurologist told me he would have no problem sending me to a neurosurgeon for biopsy, then it all went pear shaped when I pushed for it.

    Its like they knew I really meant what I was saying that I wanted a biopsy to try and get more info, but it became a less likely procedure as time went on, except as I said my last meeting with my neurologist, I felt he was going to once again allow it, but it didn't pan out.

    Am I being unfair in trying to get more info? I tick all the boxes for a particular neurological condition as my neurologist said last time, and would biopsy help him come to a conclusion or not. What does infective mean, is it possible something has the potential to infect, or there is a process going on. Would biopsy tell us more? Would the ticking of all boxes symptom wise for a particular neurological condition, have any bearing to infective, or is infective possibly just that, nothing to do with ticking all the boxes symptom wise for a particular neurological condition. These are all things I would like to get more information on from my neurologist next week.

    One thing is for sure, I'm very drowsy and drunken feeling every day since I became unwell. If I walk a short distance, I get severe pain in my legs, and more wobbly just like when someone who is drunk, their balance and spacial awareness isnt good. Thats me, and I don't drink, so I don't see this as anything but neurological.
    I can't understand a lot of the saying one thing and then taking it back. If I think I'm getting close to getting somewhere with my neurologist, I leave and feel hope, only to find out when he writes to my GP, that all is different, so its immensely frustrating.

    I know it must be hard for you that your kids have flown the nest, it is obviously going to be a different set up I suppose without them at home. Mine will one day be on their way as well. We all did it I guess.

    Excerise is mostly stretches for me, and walking but I walk slow and its stop and start when the pain comes on. Thats the way it's been since I became ill. I'm limited because of this
    Drunkenness and fatigue. I do what I can and have slowed down considerably so I pace myself.

     
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    Old 03-28-2019, 01:56 PM   #19
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    Re: Numb Thumb

    Quote:
    Originally Posted by quincy View Post
    Blathanna....what biopsy are you wanting to have done?

    I've been using Effexor XR for many years, and for me it's been the best med.

    The reason I asked about your neck....it can also cause the full headed feelings. I experience them daily. Sinus issues as well and general sensitivities to environment.
    Add medications that intensify....it's a double whammy.

    Your statement about symptoms intensifying depression and anxiety is absolute fact. Many doctors want to help the obvious...increase these meds. I refused to increase my antidepressant...my statement was that I'm aware of my depression and anxiety and being aware of what's happening is fine. The other unanswered issues is what drives me crazy and makes it worse.

    I, as well have many issues going on. Distraction doesn't make the reality go away.

    I hope the neurologist offers further testing. Nerve conducting for sure. Has massage or accupuncture or TENS been suggested?
    Has talk therapy been offered to you?

    q
    quincy,
    Thanks for your reply. I take efexor too. I think I'm doing grand on it. I think I will just stay on it because all the changing around isnt suiting me. My physical symptoms are I know adding to my low mood. I too told my psychiatrist this, but they treat mostly with meds so I suppose thats their area really. She did tell me that if I didn't want to take what she recommended that I'm kind of wasting my time going to her and that maybe I should not attend if that is what I want.

    I asked for brain biopsy because I feel so unwell and there wasnt any answers for my symptoms. I was thinking if something rare could be going on and thought it would be worth a try to look deeper. It hasn't panned out. I'm getting mixed messages. Every time I think I'm edging closer to something possibly happening or that if I tick all the boxes symptom wise for a particular neurological condition as my neurologist told me, I end back at the beginning. Its as frustrating as can be.

    Next week I'm going to go to my neurologist and see what he says. I mean last time, I thought biopsy he might be going ahead with, thats what I felt anyway having been with him for an hour but it didn't happen.

    I would like as well just to get more clarity on what infective means other than it doesn't necessarily mean if something is listed, it doesn't mean a person has a particular illness. Thats what my neurologist said last time. Infective came out of the blue. It was never in any of my other three or more years of reports since 2014. It was listed when the neurosurgeon did an Mri. I just didn't know what it meant.

    I don't know but I think a lot of people if they were having the symptoms I am having for so long and they saw infective listed, would they be wondering what it meant and if it might be why they are ill. I don't know what to think with all the mixed message's.

    I'm really hoping my neurologist will clarify things a bit better next week. I did what he asked and attended the psychiatrist's but nothing has changed but actually worsened with the meds so surely my neurologist will see this route has been very difficult and exhausting and I ended up going on a downward spiral, so that isn't right either.

    Either I have this particular neurological condition that my neurologist says I tick all the boxes symptom wise for, or it's something thats happened that maybe a biopsy can help distinguish what's what.

    I should not be feeling drunk and drowsy fluy head every day. There is something causing this in my head.

    I'll let you know how it goes next week with my neurologist. I really don't know if I am to be hopeful of some sort of conclusion or the same old, going away with nothing. Its just a terrible situation to be in for nearly five years now.

     
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    Old 03-29-2019, 10:42 AM   #20
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    Re: Numb Thumb

    Yeah, what does infective mean? Good point.
    Regarding your brain MRI...do you have a copy of the radiologist report?

    What dosage of Effexor? Im only at 75mg....takes the edge off.

    I would suggest to put off the brain biopsy....where would it be taken specifically? I know of many with specific liver disease, docs pushed for biopsy and inconclusive. Some ended up with up to 6 biopsies....a risk in my mind considering it's invasive.

    Have you had cortisol levels checked? Thyroid?
    Possibly genetic marker testing? Any issues in your family?

    q
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    Old 03-29-2019, 12:51 PM   #21
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    Re: Numb Thumb

    quincy,

    Did you mean a copy of my MRI report where infective is listed? I have a copy of that. Infective I don't know what it means. It wasn't listed in any previous MRI reports dating back to 2014, just came up in late last years report. That particular MRI was requested by the neurosurgeon.

    There was mention of I having something genetic. This was mentioned in a letter by my neurologist to my respiratory physician and GP. That's about two years ago, but nothing more was said than that.

    I am waiting for my blood results. I should have those back next week. Last bloods I had done were last year and my cholesterol was up a little but doc said we just keep an eye on it. My neurologist took so many bloods last year as well, but I never heard anything back so I suppose they were fine.

    The biopsy would have been I think in the frontal lobe, not absolutely sure but I think the neurosurgeon said that or near that area. It hasn't panned out anyway.

    The only family history I have is of Diabetes. Three in the same family had diabetes. My grandfather, his mother and his sister. My own father died of a heart attack, my mother died of a hemothorax followed by spontaneous pneumothorax. I have been checked for diabetes and everything was fine.

    I did have a thyroid adenoma for many years. I had one dose of radioactive iodine, and that shrunk it to half the size. About 10 years later I had my thyroid removed. A new specialist took over from my old one. He said best to take it out, saving me having to attend for biopsy regularly. I had numerous biopsies over the years I had the adenoma. I also had endoscopic sinus surgery in 2012. My respiratory physician is happy since then with my breathing tests and sinuses and sleep apeona. I'm due to see him next week also for my usual check up with him. He did do a bronchoscopy once and there wasn't any need to take tissue for biopsy. The bronchoscopy went fine. I do get abscesses on and off but they are not of concern my GP said. Some are more prone to them than other's she said.

    Thats about it really. I would really like to know though what's causing the drunkenness drowsiness. I'm not right since I got those morning headaches back in 2014. It's this awful drowsiness though that's concerning me. My head feels like full and foggy, sickly feeling, like bad flu in my head every day.

    I doubt my neurologist will allow biopsy. The thing is what is this and why isnt it going away. Every day I'm ill with it. If it is this particular neurological condition I tick all the boxes symptom wise for then maybe thats why I'm ill, but my neurologist has not diagnosed it so I'll talk to him next week and see what he says then.

    I'm on 225mg of efexor. I was doing fine on 150mg, but the psychiatrist who prescribed Quetiapine upped the efexor to 225mg. I feel no difference on 225mg .

    Thanks again for reply.

     
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    Old 03-31-2019, 09:49 AM   #22
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    Re: Numb Thumb

    Lots going on. Yes...those are the MRI results I meant.
    Good to have clarification.

    I would question the increase of the meds....if you felt good on lower Effexor, it's helpful to maybe stay only on that and wean off the other.

    Obviously, you have been checked for diabetes....and other hormines considering your thyroid has been removed.

    Have you seen an ENT and checked for vestibular issues? The neurologist could refer you.

    I'm hoping some answers are soon.

    q
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    Old 03-31-2019, 02:14 PM   #23
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    Re: Numb Thumb

    quincy,

    Was checked out for vestibular in 2014 and it was not that either. I've seen an ENT specialist, and Rheumatologist and they said all was fine as did a cardiologist as well. He did an angiogram and it was fine except for some diastolic dysfunction. He didn't need to see me back and took me off a cholesterol tablet because that particular tablet can cause painful legs. I still have the awful heavy legs like led. Walking gets very very painful and I notice I get more stumbling and drunken walk if I walk further so I pace myself with the pain and staggering.

    I will see my neurologist tomorrow. I will also ask my GP to reduce the efexor back to 150mg. I don't know quincy what infective could mean. Is it possible for small vessel ischemia, post traumatic, demylenation, that have been listed for five years, say look infective? Or would infective look different to these on MRI? Is there a way to distinguish infective from all the rest or vice-versa do you know?

    I don't know why it was only listed when I pushed for biopsy, it kind of concerned me because it didn't appear in any other MRI reports previously. I had so many MRIs, infective is a new possibility, but my neurologist said just because something is listed, it doesn't necessarily mean a person has a particular illness. What am I to make of that, I don't know because the flip side is, what if it means a person has a particular illness. Its all very frustrating and I am ill, yet there doesn't seem to be any movement by my neurologist to give me closure either the particular neurological condition he says I tick all the boxes symptom wise for, or biopsy to get further info. I mean would biopsy distinguish infective as being a cause for my symptoms.

    I don't know what I am to make quincy of my symptoms and their cause. There is something causing my illness and I feel I'm really being sent back and forth when if my neurologist would try to come to some sort of conclusion it would be better I know than having to be sent all over the place. I am wiped out as it is so my neurologist surely knows this is all getting unfair and I end up having hope and then it's all taken away once I leave my appointment.

    My neurologist told me he knows I am very ill, I tick the boxes etc.., I'm thinking he was allowing biopsy and then I go away, and its all the opposite. What is wrong and why is my neurologist giving me false hope I just have to talk to him again and say how I feel about being sent all over the place , being told this and that, including by my neurologist and hope he will tell me why I am ill.

    Its going on so long and I'm not getting better, so is it time to tell me why I am ill and allow me to get away from all this frustration and going back and forth.

    I'll update you tomorrow once I am back from my appointment. I don't know what to expect but I know my neurologist knows I am ill.

    Thanks for your reply.

     
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    Old 04-01-2019, 04:32 PM   #24
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    Re: Numb Thumb

    Quote:
    Originally Posted by quincy View Post
    Lots going on. Yes...those are the MRI results I meant.
    Good to have clarification.

    I would question the increase of the meds....if you felt good on lower Effexor, it's helpful to maybe stay only on that and wean off the other.

    Obviously, you have been checked for diabetes....and other hormines considering your thyroid has been removed.

    Have you seen an ENT and checked for vestibular issues? The neurologist could refer you.

    I'm hoping some answers are soon.

    q
    quincy,

    Just to let you know, I had no luck today with my neurologist. He said all he could offer me would be a second opinion with one of his team, another neurologist. He knows I had many opinions already, and highlighted that he and them all do not think I have a particular neurological condition.

    We touched on biopsy and that too is not going ahead. He said what if it doesn't provide information, and I said what if it did, that's the way that went.

    He didn't examine me today or at my last appointment. He examined me once out of five appointments. He just was typing to my GP, everything we discussed.

    I told him, I will fight my own corner on trying to get an answer for my symptoms. I asked him about infective. He said that radiology lists different things and infective is just another thing listed, like inflammation, small vessel ischemia, etc...

    He told me I would have to get a neurosurgeon to agree to do biopsy. I had one who did agree, but my neurologist told him not to go ahead so to be honest, it has been just the same old story. My neurologist says one thing and then back tracks. I brought up that he did tell me, he had no problem sending me to a neurosurgeon for biopsy in the beginning, he said today that he didn't say that, but that he had no problem sending me to one for an opinion. Thats not what he said originally.

    I'm very tired now, that's about the just of my appointment with my neurologist today. I said there is evidence to suggest I am ill due to a neurological cause and that my case has become a bit of a joke.

    I will try to figure this out myself, why I am ill. I have abnormalities on my brain, but so do lots of other people my neurologist said. I have symptoms but do all the others who have the abnormalities have these symptoms, my neurologist said no, so its just not going to come from my neurologist any diagnosis. He didn't even examine me.

     
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    Old 04-02-2019, 11:36 AM   #25
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    Re: Numb Thumb

    Hi...sucks about the appointment not being productive.

    Could you possibly see a radiologist?
    q
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    Old 04-02-2019, 01:30 PM   #26
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    Re: Numb Thumb

    quincy,

    I don't know how I could do that here. Usually there are no appointments given here to see radiologist's. They report on the scans only and either my neurologist or GP tells me the results.

    I always thought part of the picture would be neurological exam included in my appointment. I mean how does a neurologist know if something may be abnormal or not if he doesn't do a neurological exam along with all the rest. I don't understand that.

    One exam in five appointments. Its kind of not a full assessment for my symptom's.

    There were abnormalities found in the past quincy, by other neurologists, including something to do with my eyes by my now neurologist way way back, if I remember correctly I think it was double vision, others found, altered heel to toe movement's, toes go up, hypereflexia, in both upper and lower limbs with spread to supernator jerks, nearly falling over on exam, seeing two on pen and finger test.

    Then the psychiatrist who prescribed antipsychotic medication told me, all these neurological exam findings can be found in someone with Somataform disorder, and that he has seen people end up in wheelchair's from this condition.

    What do you make of it all quincy? I mean if I am ill due to a psychiatric problem, I can't understand infective in my report either and its like if I mention anything about my report's, I am stopped in my tracks. I asked my neurologist about it yesterday, infective and he said radiologist's list thing's, possibilities. I don't have any infection my neurologist said yesterday. Its all very strange I feel personally. Maybe that's why the psychiatrists are involved, but I feel there is something missing, I don't know what that is though and I can't seem to shrug off that something isn't adding up for me.

    Am I imagining all this, that I see oddities in my case or is there oddities. I feel like I'm on a merry go round. Some things are just not making sense to me. My symptoms are down to something but what I don't know. I'm very confused by it all. I feel there's more to my symptoms than meets the eye. What I don't know is if this is really psychiatric as being diagnosed, or I have the right feeling that its not.

    That's where I'm at now. Is my feeling totally wrong and I am ill due to a psychiatric cause or is it something else. Infective did come up, and its like it means just that, a possibility that has been ruled out along with the particular neurological condition, I tick boxes symptom wise for. My neurologist told me he really doesn't need to see me back, but ask for an appointment for six months so I be left on the system, otherwise, I would be taken off the system.

    Thanks for your reply quincy

     
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    Old 04-03-2019, 07:54 AM   #27
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    Re: Numb Thumb

    Dear Blathanna,

    Once a medical group makes judgements we cannot escape their perception. They will not change their point of view or how they think. It doesn't mean they are wrong but it also does not prove they are right. If I were dissatisfied I personally would not keep seeing anyone in that group. You seem perfectly rational to me. It's very convenient to blame the patient.

    If we want other opinion we really must be seen in a different, separate medical group.
    I personally would make an appointment with an endocrinologist outside of that medical group, and explain my symptoms. I would NOT take the old test results to the new doctor. You don't need the other doctors to be disproved.

    If your thyroid hormone level is not appropriate for your needs, that alone can cause all sorts of symptoms and complications. To me it appears that you need fresh eyes and fresh thinking.
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    Old 04-03-2019, 10:04 AM   #28
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    Re: Numb Thumb

    It all sounds like the proverbial rock and hard place. Another perspective is definitely needed. I also suggest endochrinologist considering your thyroid has been removed....it's another angle to pursue just because.
    It doesnt sound psyche (as cause) to me....
    Have you seen a rheumatologist?
    Have you been checked for viral causes such as CMV? That could ve the possible infective.
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    Old 04-03-2019, 11:28 AM   #29
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    Re: Numb Thumb

    Quote:
    Originally Posted by yayagirl View Post
    Dear Blathanna,

    Once a medical group makes judgements we cannot escape their perception. They will not change their point of view or how they think. It doesn't mean they are wrong but it also does not prove they are right. If I were dissatisfied I personally would not keep seeing anyone in that group. You seem perfectly rational to me. It's very convenient to blame the patient.

    If we want other opinion we really must be seen in a different, separate medical group.
    I personally would make an appointment with an endocrinologist outside of that medical group, and explain my symptoms. I would NOT take the old test results to the new doctor. You don't need the other doctors to be disproved.

    If your thyroid hormone level is not appropriate for your needs, that alone can cause all sorts of symptoms and complications. To me it appears that you need fresh eyes and fresh thinking.
    yayagirl,
    Thanks for your reply. I think you have made a very good point, that fresh eyes and fresh thinking would help maybe. I will definitely ask my GP to refer me to an endrodologisit. I had jy thryoid removed and the specialist at that time did not ask me to come back, remember I told you that he said to avoid having to keep coming back for biopsy, better to remove my thyroid.

    It is a very good idea I think to ask my GP to refer me to a thyroid specialist, even if my blood work is showing normal enough readings. I would still like to see one for my symptom's to see if anything is related in that area for my symptom's.

    Currently I take 150mcg of Eltroxin five days per week, and 175mcg, two days per week. That's the dosage I am on for a good many years.

    The other thing yayagirl, is I got my blood results back, thyroid isn't back yet. The doc rang me yesterday evening. My cholesterol is 8.6, my Triglyceride is 3.51, high on both of those. Am not currently taking a cholesterol lowering med, doc who rang said I need to take one, but I did last year, and stopped taking it which I probably should not have, it was a new tablet I remember and I felt I could try to manage with diet change. The Doc told me when I go to see my GP next week, that she will prescribe a cholesterol tablet, so that's on their list for next week.

    The other result is the ALT, it is 35, high written next to it, but the HbA1c for diabetes is at 44, high written next to it, and fasting glucose is at 7.5, high written next to it. The Doc who rang said, that these just need to be kept an eye on, I told him about my grandfather, his mother and sister all having diabetes, I asked him would it be genetic, he said not necessarily, with proper diet and excerise, these results can be reduced, so I will talk to my own GP about these results as well. I remember the HbA1c IFCC, being 44 in one of my older blood results.

    I do think I should see an endrodoligisit, and see what they make of my symptoms, sorry can't spell the name for thyroid specialist right.

    I don't know if you will understand the numeric results they do here, but the ones I have listed have high written next to them. Still awaiting thyroid results.

    I hope my GP won't say I don't need to see a gland specialist, I will tell her it is what I want to see if my symptoms are down to any issues there.

    I think the doc who also works at my GP, s surgery said, I am between the high end of normal for Diabetes, but I don't have diabetes is kind of what he said.

    Will keep you posted, I might try to get an appointment if I can with my GP, for Friday, if they have a slot available.

     
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    Old 04-03-2019, 11:56 AM   #30
    Blathanna77
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    Re: Numb Thumb

    Quote:
    Originally Posted by quincy View Post
    It all sounds like the proverbial rock and hard place. Another perspective is definitely needed. I also suggest endochrinologist considering your thyroid has been removed....it's another angle to pursue just because.
    It doesnt sound psyche (as cause) to me....
    Have you seen a rheumatologist?
    Have you been checked for viral causes such as CMV? That could ve the possible infective.
    q
    quincy,
    Thanks for your reply. Yes I did see a rheumatologist, he said all was fine. I've posted some of my blood results that came back high to yayagirl. If you can see them, that would be good, cholesterol, diabetes, glucose, those ones are a bit high. The doc who rang from my GP's surgery told me, the cholesterol needs medication and to discuss that with my GP, who I will try to get an appointment with for Friday.

    I think it is a good idea to see an endrodologisit, especially if the diabetes results are a bit high, and having had my thyroid removed. Maybe he or she might know why I have my symptoms. I hope my GP will get me seen by one. It depends on whether she thinks I need to see one, but if she doesn't, I will just push that I want to see one, because of my family history of Diabetes and also an uncle of mine did tell me once, that he had some hereditary condition, where I think fat builds up in the blood. What happened to him, was at about age 45, he noticed he was getting short of breath climbing the stairs.

    He was seen by a cardiologist, who found that four of his main arteries to his heart were 90% blocked. He then underwent quadruple bypass. This is my mothers only sibling. He was very fit, and never drank or smoked. I mentioned all this when I myself had an angiogram. My angiogram was fine the cardiologist said, so that's good anyway.

    I don't know quincy if I was checked for viruses, I did have lumber puncture in 2014, that included being checked for Lyme's, which was negative. What is CMV? I can ask to be checked for it. What do you think?

    I don't think it is psychiatric at all and I really would prefer, I will tell my GP to reduce the efexor back down to 150mg and take me off the Quetiapine 300mg. I have decided not to take the Valdoxan. It is all very frustrating and my symptoms are very difficult what with this drunkenness woozy head etc..., so definitely I do think an appointment with a gland specialist would be worth a try to see if my symptoms would be something to do with my thyroid and let them look at my blood results.

    I will update you, if I get to see my GP this week. Its worth a try to see someone different for my symptom's, because I've gotten nowhere the neurological route.

     
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