Lumber Puncture

[Hen]

Here are my symptoms incase they can be related to by anyone else ❤️?❤️


My Symptoms

Not been able to think of simple Words and always trying to find a word and then having to stop in conversation because I can't think of a word. This happens every single day all throughout the day. I am
Constantly not able to think of a word I need to use. I will sit and try and try and it just doesn't come to me and I have to give up. It's so frustrating and upsetting feeling so stupid all the time.
.


Always saying the wrong words. I know what I want to say and when I start to talk I will say a word that makes no sense to what I'm trying to talk about . It's like my brain picks a different word to what I wanted to say. Sometimes I notice I have done it and most the time I don't even notice it anymore and then of course my kids will tell me I said the wrong word , or they will say don't you mean this (right word).



Forgetting everything . Forgetting what I talked about minutes after I was talking. Forgetting when things happens I feel it was yesterday but then I find out it could be months ago or even a year ago. Forgetting what things are called all things like objects, flowers , places everything. Forgetting any appointments made all the time. Forgetting to pay things like bills , Afterpay ect . Can't remember anything someone asks me to do and then they get mad at me for it because I'm always saying "I forgot" can't run a Bath cause I forget it's running. Sometimes I forget to take my top of and undies and get into the bath with them still on, It's all so very frustrating ?

Can't read books anymore because I'll just forget everything I read by the time I get to the bottom of the page. Now I'm starting to get jumbled when even reading one line in anything I'm reading and can't seem to comprehend what I'm reading it's like mumble jumble to me and I will have to then read that same line a few times to let it sink in what it said.

Can watch the same show over and over and still not remember a thing each time. It's like watching it for the first time every time.

Starting to not recognise my own things/belongings and think it's someone else's not mine (that's terrifying to me)

Sometimes I wake at night and forget for a few minutes where the hell I am. I don't know what house I'm in or will think I'm in a house from 10 years ago. (That is also extremely scary and upsetting to me)

I've lost interest in just about every thing I ever loved or enjoyed doing. Just don't feel motivated or seem to care about even going out the house so I don't anymore. I can't find new interests because I just don't care to have any.

Called my granddaughter who lives with us since she was born a different name that we don't even have in the family and burst into tears when I realised I had done it.

I'm forgetting people like my own children who have left home. I just don't think about them until someone mentions them . I feel like I'm forgetting important people in my life and it's devastating to me.

Not been able to add/calculate in my head anymore like I use to. I was always very quick and adding in my head and now can't do that. Most times now I just give up trying.

I feel I'm losing who I am and becoming someone else. It's just horrendous and a feeling of hopelessness. I'm aware of these things and some I'm starting to not even notice anymore and only do because my younger kids point it out to me. I know I'm not right in the head anymore , I know it and it's damn frustrating and makes me feel stupid all the time. I feel so stupid everyday of my life now.

Strangely so, my long term memory is becoming so clear to me that I am remembering things I've not even thought about for 30 years or more. It's quite astonishing to me how well I am remembering things from my childhood.

I forgot how to get out of a coles store that I have known for years and I couldn't remember which way to go to get out of the shop but thank god my daughter was there with me to help me.

We drive past places I do not recognise at all and I'll ask where we are and it will be somewhere we have driven past a thousand times down from our house

Has anyone questioned whether it is Menopause? You certainly are the right age and a lot of your symptoms look similar. There is an excellent app called Balance which was started by Louise Newson who is a GP and Menopause specialist. Also look at Newson Health. Louise is trying to educate GP's and the public to the severity of menopause and our acceptance of it, seriously, have a read. Best wishes x

 

[Palerider]

I think its really important not to get into the self diagnosis climate and go with your specialist for now @Nonnajay. If it were all so simple many people in the world would have an immediate diagnosis and remedyand clearly we would not need to weigh on the NHS or similar health services throughout the world. Some conditions take longer than others to diagnose and they require specific types of evidence to either refute them or support them, something that cannot be gained from some very simplistic approaches, though it is tempting to put our faith in something else it generally yields nothing.

Hoping you have made a decision on the LP either way

 

[Nonnajay]

I think its really important not to get into the self diagnosis climate and go with your specialist for now @Nonnajay. If it were all so simple many people in the world would have an immediate diagnosis and remedyand clearly we would not need to weigh on the NHS or similar health services throughout the world. Some conditions take longer than others to diagnose and they require specific types of evidence to either refute them or support them, something that cannot be gained from some very simplistic approaches, though it is tempting to put our faith in something else it generally yields nothing.

Hoping you have made a decision on the LP either way

I’m going by what my neurologist thinks and my test results he gave me. If I were going by “self diagnosis” ide have a 100 different things.

No one in their right mind would want to have Alzheimer’s or dementia.

My neurologist has already diagnosed me with “cognitive impairment” but now believes it is something a bit more now hence having to have further tests.

Many people in the world go undiagnosed also. Many people in the world also get diagnosed with the wrong thing and spend many years wasting time been given the wrong diagnosis and then end up to late for any medication to work for what they really have .

I’m thankful my neurologist isn’t delaying and trying to find out while it’s early.

 

[Nonnajay]

Has anyone questioned whether it is Menopause? You certainly are the right age and a lot of your symptoms look similar. There is an excellent app called Balance which was started by Louise Newson who is a GP and Menopause specialist. Also look at Newson Health. Louise is trying to educate GP's and the public to the severity of menopause and our acceptance of it, seriously, have a read. Best wishes x

I wish it was only menopause but unfortunately, I am still getting my period right in time every month ! I cannot wait till they stop. My mothers didn’t stop till she was 54. I pray I am not waiting that long lol.

Yes my GP had me do blood tests to check hormone levels and asked if there are any changes in my cycle before we looked further into what’s wrong with me. I trust my doctor and neurologist know what they are looking for and how to deal with it cause I honestly can’t stand living like this anymore .

 

[Nonnajay]

Hi @Nonnajay, is it the possible pain or after effects that worry you most? If your main fear is the actual process I wonder if they could sedate you like they do with some other procedures to make it bearable.
I would certainly discuss you worries but also make it very clear that you have bulging discs - I wonder if the position of them would affect their ability to do a lumbar puncture.

Good question! I’m worried about where they are doing it because of been so traumatised the last time I had a spinal needle when they did surgery for a c section 4 times.! It’s just beyond a simple fear . I have chronic back pain down in that area and the whole thing terrifies me Silly. I don’t want to feel that way , I really don’t but it’s a real fear

 

[silkiest]

Good question! I’m worried about where they are doing it because of been so traumatised the last time I had a spinal needle when they did surgery for a c section 4 times.! It’s just beyond a simple fear . I have chronic back pain down in that area and the whole thing terrifies me Silly. I don’t want to feel that way , I really don’t but it’s a real fear

I'm not surprised. I would be frightened too and I would be asking a lot of questions. If the neurologist knows your reasons behind your fear they may be able to reassure you.
I remember years ago I was having surgery and I was talking to one of the other people waiting and I was able to give her a lot of information. She asked how I knew and I said "because I asked", she was really surprised that I had asked, but the surgeon and anaesthetist were more than happy to answer all my questions.

 

[Jaded'n'faded]

the whole thing terrifies me Silly. I don’t want to feel that way , I really don’t but it’s a real fear

Oh I understand, I really do! I wouldn't consider myself to be a wuss! I can cope with spiders and snakes but medical procedures/dentists... no. Just no. I've tried everything - mild tranquiliser beforehand, having someone there to hold my hand, etc. but I'm embarrassed to say I can't control the fear and have collapsed in a weeping, sweating mess on several occasions. (I have had successful dental treatment under sedation - midazolam - but it is hideously expensive.)

So don't dismiss your fear or let others brush it off. It is very real to you. Good doctors understand this and sometimes... are able to help you through. But they should also respect your decision to not have the procedure if that's what you decide. Talk to your doctor - he sounds really good.

 

[Pejic]

If your neurologist tells you he wants the Lumbar Puncture to see if there is evidence of the amyloid proteins in your spinal fluid, you could ask him if a PET-CT scan with radioactive tracer would do as well - this what found my amyloid plaques at a very early stage.

 

[Palerider]

If your neurologist tells you he wants the Lumbar Puncture to see if there is evidence of the amyloid proteins in your spinal fluid, you could ask him if a PET-CT scan with radioactive tracer would do as well - this what found my amyloid plaques at a very early stage.

Thats quite interesting, I just wonder if this would be possible @Nonnajay but its down to the radiologist not the neurologist -a discussion would have to take place between them -maybe worth asking?

 

[Nonnajay]

I'm not surprised. I would be frightened too and I would be asking a lot of questions. If the neurologist knows your reasons behind your fear they may be able to reassure you.
I remember years ago I was having surgery and I was talking to one of the other people waiting and I was able to give her a lot of information. She asked how I knew and I said "because I asked", she was really surprised that I had asked, but the surgeon and anaesthetist were more than happy to answer all my questions.

Hi Silkies , but the only way I could talk to the person who would be doing it is if the appointment date was already set and I was at the hospital. I’m not sure how it works in the UK if that’s where most of you are but in Australia , well where I am in Australia we can’t just pick up a phone and speak to surgeons we have to be booked in for the process first and then if they can fit you in to see them before hand that is the only way to ask questions . My worry is can they not diagnose without it .

 

[Nonnajay]

Oh I understand, I really do! I wouldn't consider myself to be a wuss! I can cope with spiders and snakes but medical procedures/dentists... no. Just no. I've tried everything - mild tranquiliser beforehand, having someone there to hold my hand, etc. but I'm embarrassed to say I can't control the fear and have collapsed in a weeping, sweating mess on several occasions. (I have had successful dental treatment under sedation - midazolam - but it is hideously expensive.)

So don't dismiss your fear or let others brush it off. It is very real to you. Good doctors understand this and sometimes... are able to help you through. But they should also respect your decision to not have the procedure if that's what you decide. Talk to your doctor - he sounds really good.

Hi Hunni

Omg a fellow hospital fearer lol it’s not acrually really funny is it , that fear is real and damn annoying. The mention of a “hospital” or “dentist” can put my blood pressure up within seconds. I hate both with a big “H”. I’ve had so many traumatic experiences in a hospital that it really did a good job on me. The worst was going in 16 weeks pregnant and coming out not pregnant because of a nurses in competence . She killed my baby by not checking to see with a ultrasound what was happening with baby and just used a knitting needle type of stick they use to break your waters, and placing it into my cervix and pulled it out with our baby hanging of the other end of it. I have a very great fear of hospitals and always will now.

But back to the lumber puncture, I am scared of that because I’m my last c section the perosn that puts the spinal tap in to numb you from the waist down put it in wrong and omg I was screaming and he was screaming at me not to move because he had put it straight through a nerve and the pain was horrendous and ever since that happend my legs have involuntary jerks and that goes on 247 every single day so I can’t drive a car now . Whatever he did caused these jerks in my legs .

So I really don’t like hospital as you can see ? but even worse now it’s got to do with my spine . This fear is REAL

 

[Nonnajay]

If your neurologist tells you he wants the Lumbar Puncture to see if there is evidence of the amyloid proteins in your spinal fluid, you could ask him if a PET-CT scan with radioactive tracer would do as well - this what found my amyloid plaques at a very early stage.

Hi Pejic

I did have a MRI done but nothing really showed on that . But in the report it said

“Mild susceptibility artefact in the basal ganglia most likely calcification. Also consider possible iron or copper depositional disease” .

Not sure what that is about but my neuro blew it off so it can’t be bad.

 

[Nonnajay]

Thats quite interesting, I just wonder if this would be possible @Nonnajay but its down to the radiologist not the neurologist -a discussion would have to take place between them -maybe worth asking?

I will have to ask neuro but I’m not meant to see him till it’s all said and done

 

[Pejic]

Hi Pejic

I did have a MRI done but nothing really showed on that . But in the report it said

“Mild susceptibility artefact in the basal ganglia most likely calcification. Also consider possible iron or copper depositional disease” .

Not sure what that is about but my neuro blew it off so it can’t be bad.

I had an MRI scan (after the PET-CT scan with radioactive tracer which detected the amyloid plaques) and that MRI was deemed 'normal', I assume a normal MRI scan is not sensitive enough to be definitive.

 

[Jaded'n'faded]

Hi Silkies , but the only way I could talk to the person who would be doing it is if the appointment date was already set and I was at the hospital. I’m not sure how it works in the UK if that’s where most of you are but in Australia , well where I am in Australia we can’t just pick up a phone and speak to surgeons we have to be booked in for the process first and then if they can fit you in to see them before hand that is the only way to ask questions . My worry is can they not diagnose without it .

We can't phone consultants or surgeons directly either! However, most consultants have a secretary or admin-type person that you can call. You could probably contact this person and put your questions to them - phone the hospital and ask. They won't have an answer for you because they are not usually medics themselves but they could put your concerns to the surgeon/consultant then the secretary would get back to you with an answer or alternative suggestions. (Hopefully.)

 

[Nonnajay]

Hello Nonnajay
I just wanted to thank you for your post and wish you well. So many times I have thought of listing my symptoms and posting to ask if anyone else had the same, because it is incredibly lonely as you say. It takes a lot of effort and energy to put it all together in your mind and then get it written down. So well done! I'm so sorry that as well as all these symptoms you have physical health problems to deal with. That's very hard on you. I think you've had good advice about your lumbar puncture. Whatever you decide, good luck and keep posting. You're not on your own here.

Awwwww darling thank you ? thank you for such a lovely reply from you.

It took me weeks to get a list of my symptoms together because I keep forgetting ones so had to add on to the list lol . Shouldn’t laugh it’s so bloody frustrating for me.

Seems not many but one has same symptoms as me . I don’t expect anyone to have every same symptoms as me but someone said they have many of the same symptoms or their wife does so it made me feel less alienated on here.

 

[Nonnajay]

We can't phone consultants or surgeons directly either! However, most consultants have a secretary or admin-type person that you can call. You could probably contact this person and put your questions to them - phone the hospital and ask. They won't have an answer for you because they are not usually medics themselves but they could put your concerns to the surgeon/consultant then the secretary would get back to you with an answer or alternative suggestions. (Hopefully.)

Thankyou Nonnajay- My OH not got an appointment yet to see anyone- Its been nearly 4 months now and he is not improving shall I say - but He is a fighter and not letting anything bother him- Its really bad when people may or may not suffering from Dementia having to wait so long without even a whisper on when they may see anyone even the GP dismiss it and try talk about other things -a headache gets more attention

It is a terribly long wait for some of us.

Darling if your GP is ignoring your pleads that something is wrong with you partner then you need to change gp’s and asap. Your gp should be listening to everything you say and taking it all seriously.’ If he isn’t then you need a new one .

 

[mikeb2]

It is a terribly long wait for some of us.

Darling if your GP is ignoring your pleads that something is wrong with you partner then you need to change gp’s and asap. Your gp should be listening to everything you say and taking it all seriously.’ If he isn’t ,

The trouble is that many GPs cannot help much only listen and that is that and also just refer you to this society, its waiting for memory clinics- also my OH only 64 and there the problem to has clinics don't like seeing -younger suffers because of the difficulty in diagnosis, - which makes a mockery out of saying "if its noted quickly the better they can help the person a

 

[Nonnajay]

The trouble is that many GPs cannot help much only listen and that is that and also just refer you to this society, its waiting for memory clinics- also my OH only 64 and there the problem to has clinics don't like seeing -younger suffers because of the difficulty in diagnosis, - which makes a mockery out of saying "if its noted quickly the better they can help the person a

I so agree with you with it been made a mockery with saying early diagnosis is better for early treatment but then many wait years to be diagnosed.

Where in the world are you ?

Does your oh notice his changes within himself? Is he aware he has something wrong with him?

 

[mikeb2]

We live in the Norfolk area so very close to clinics . hospital etc My other half is aware of many changes though there's time where he is very confused and lost he what's bothering at the moment is very vivid dreams, nightmares
but he certainly a fighter has hes taken everything very calm ,he not depressed or anxious ,