Lumber Puncture

[Nonnajay]

Hello again ,

I have finally seen my neurologist again and this appointment with him was so very different from the first one where I had decided I didn’t like him straight away cause I felt he wasn’t really “listening” to what I was telling him and I felt he snubbed me off cause of my age (I’m 48 years young)


Anyhow, he was absolutely wonderful and so understanding. First thing he said was the brown scan didn’t show anything like clots or tumours or anything bad like that.

Then he said in a very changed and serious voice , and the cognitive test that we did with you when you were here last , unfortunately you didn’t do very well with. He said now if you were 78 I wouldn’t of been too concerned with that result but since you are not 78 and are 48 , we have to take this a bit more serious . His whole face changed the way he was looking at me , and my daughter who was with me noticed it too, it was as if he thinks he knows what it is but won’t say just yet.

I gave him the list of symptoms and changes I’ve noticed in me and what is happening with me and he looked so concerned but was so lovey about it all.

He asked how long had I first noticed any memory issues and I went blank so my daughter jumped in and said about 6 years and then he asked when did I notice it’s really becoming worse and I said the last year and he then asked my daughter would she agree with that and she said yes.

So then he said ok, there are two other tests we will need to have done before we talk further on this and he said one is a psyche test that will take two hours and I have to have two of these and the other is a lumper puncture . He said the psyche test wil be to see if it’s depression or Alzheimer’s or dementia and if it is one of those then we will deal with that if that’s the case. He made me feel so at ease about it all.

Now, I am absolutely terrified of a lumber puncture I have had so many spinal taps with 4 c sections in the past and the last one was horrific as the needle went in wrong and caused the most agonising pain I’ve ever had. It also left my legs to jerk uncontrollably ever since and that was 9 years ago. My legs jerk involuntarily 247 ever since I had that last spinal needle.


My question is , can they not diagnose without the lumbar puncture? I REALLY don’t want it . Like it’s beyond a normal fear of it , I just can’t go through with it and I’m scared he will say if I don’t have it he can’t diagnose me.

Sorry for such a long winded rant.

I wil post my Symptoms if anyone is interested to read them. Maybe someone will be able to relate to what I’m going through with these symptoms and hopefully y won’t feel like me, very alone right now in this .

 

[Nonnajay]

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

 

[Grannie G]

My question is , can they not diagnose without the lumbar puncture? I REALLY don’t want it . Like it’s beyond a normal fear of it , I just can’t go through with it and I’m scared he will say if I don’t have it he can’t diagnose me.

Hello @Nonnajay
It is something you will have to ask the doctors.
I don`t think anyone here can advise on such an important test although I know everyone will sympathise.

My father had a lumbar puncture before hydrocephalus was diagnosed. He had a similar word finding and speech difficulty to you. I don`t know about any other symptoms because I wasn`t on hand most of the time.

I do remember my mother saying how painful it was.

Do you think distraction techniques might help you? I have done yoga for years and have found yoga breathing and meditation have helped me through some painful procedures.

I have found something about different distraction techniques which might help.

This is from

Distraction techniques may reduce pain, anxiety during conscious surgery

Researchers form the UK found that having a conversation with a nurse, watching a DVD or using stress balls reduced pain and anxiety for patients undergoing varicose vein surgery.

www.medicalnewstoday.com

patients to receive one of four distraction techniques. One group listened to music during the surgical procedure, while another group chose a DVD to watch.

A third group had a nurse present throughout the procedure, who was instructed to engage the patients in conversation, while a fourth group was handed two palm-sized stress balls, which they were asked to squeeze whenever they felt anxious or anticipated pain.
Compared with patients who underwent the surgery without any distraction methods, those who engaged with a nurse during the procedure reported feeling 30% less anxiety. Watching a DVD was associated with 25% less anxiety, and the use of stress balls was linked to 18% less anxiety.

Patients who used stress balls reported experiencing 22% less pain during the procedure, while those who interacted with a nurse reported experiencing 16% less pain, compared with participants who underwent the surgery without distractions.


I really don`t know if this will help but I hope it does.

 

[Izzy]

I’m not sure how helpful this will be but I thought I’d share my experience. A few years ago I had a lumbar puncture when I was taking part in a dementia research program. I was quite anxious about it but the experience wasn’t traumatic or painful. The consultant who performed it told me that the procedure had developed over the years leading to it being less traumatic.

That’s just my experience of course. Others may beg to differ!

 

[Grannie G]

The consultant who performed it told me that the procedure had developed over the years leading to it being less traumatic.

I have to say with reference to my post #3 My father had this procedure in 1969

 

[Jaded'n'faded]

Sticking my neck out here, but...

You do not have to have the lumbar puncture. You can say no to any procedure you don't want - we all have that right. Your doctor is advising this test to rule out possible other causes, due to your young age. Older people with the symptoms you have (like my dear old mum) are not made to have lumbar punctures in order to diagnose them.

Tell your doctor about your fears. (I have similar fears about procedures and even going to a hospital so I really understand how you feel!) He will probably say he doesn't need the LP to diagnose you but would prefer you had it just to rule out other causes. But you don't have to have it if you don't want it.

And I'm really glad you've got a better doctor who understands you and actually listens!

 

[Yankeeabroad]

Hi @Nonnajay I reiterate what @Jaded'n'faded has said. You don’t have to have a lumbar puncture. Please speak to the doctor about why exactly he wants to do one and your fears.

The neurologist wanted to do one one my mom to rule out any undiagnosed infections as she declined so rapidly. However she is so old and frail (and the brain MRIs clearly showed rapidly progressing small vessel disease) that we said “no”. Your situation is much different but you need to feel comfortable with any procedure.

I would also push for therapy (speech/occupational) when you can. My dad has the exact same problem with words (can’t find them or another word comes out) and numbers (and he is an accountant!). Speach therapy worked well (as long as he did his exercises). She told me they use techniques to build up different neuro connections in the brain to compensate for the ones that might be compromised. She also helped my dad form some coping/compensation techniques and habits.

Everything that’s happening must be very alarming and frightening. I feel for you.
It sounds like you have a supportive family and some good doctors, which goes a long way.

 

[mikeb2]

My OH has the same symptoms has you and he still awaiting an appointment with a memory clinic and basically left to get on with it- not a soul has contacted us with any help - one can get very bitter with all- has for the lumber punch my OH would decline it straight away he had a very bad experience with an epidural which did not work, !!!

 

[canary]

OH has had two lumber punctures and didnt actually have problems with either of them.

In his case the scans didnt show anything, although he had similar problems to you, so the neurologist wanted to do a lumber puncture for two reasons
1) to check for raised pressure which can cause similar problems
2) to look for the abnormal proteins that cause Alzheimers plaques, Lewy bodies or Pick bodies, so they know if its Alzheimers, Lewy Body Dementia or Frontotemporal Dementia.

Talk to the doctor about your past bad experience and your fears. Also ask what would happen if you didnt have this test done - it might mean that the doctor wouldnt be able to make a diagnosis.

 

[Palerider]

Hello again ,

I have finally seen my neurologist again and this appointment with him was so very different from the first one where I had decided I didn’t like him straight away cause I felt he wasn’t really “listening” to what I was telling him and I felt he snubbed me off cause of my age (I’m 48 years young)


Anyhow, he was absolutely wonderful and so understanding. First thing he said was the brown scan didn’t show anything like clots or tumours or anything bad like that.

Then he said in a very changed and serious voice , and the cognitive test that we did with you when you were here last , unfortunately you didn’t do very well with. He said now if you were 78 I wouldn’t of been too concerned with that result but since you are not 78 and are 48 , we have to take this a bit more serious . His whole face changed the way he was looking at me , and my daughter who was with me noticed it too, it was as if he thinks he knows what it is but won’t say just yet.

I gave him the list of symptoms and changes I’ve noticed in me and what is happening with me and he looked so concerned but was so lovey about it all.

He asked how long had I first noticed any memory issues and I went blank so my daughter jumped in and said about 6 years and then he asked when did I notice it’s really becoming worse and I said the last year and he then asked my daughter would she agree with that and she said yes.

So then he said ok, there are two other tests we will need to have done before we talk further on this and he said one is a psyche test that will take two hours and I have to have two of these and the other is a lumper puncture . He said the psyche test wil be to see if it’s depression or Alzheimer’s or dementia and if it is one of those then we will deal with that if that’s the case. He made me feel so at ease about it all.

Now, I am absolutely terrified of a lumber puncture I have had so many spinal taps with 4 c sections in the past and the last one was horrific as the needle went in wrong and caused the most agonising pain I’ve ever had. It also left my legs to jerk uncontrollably ever since and that was 9 years ago. My legs jerk involuntarily 247 ever since I had that last spinal needle.


My question is , can they not diagnose without the lumbar puncture? I REALLY don’t want it . Like it’s beyond a normal fear of it , I just can’t go through with it and I’m scared he will say if I don’t have it he can’t diagnose me.

Sorry for such a long winded rant.

I wil post my Symptoms if anyone is interested to read them. Maybe someone will be able to relate to what I’m going through with these symptoms and hopefully y won’t feel like me, very alone right now in this .

Hello @Nonnajay

I can't advise but I can say I am very used to lumbar puntures, they are not the same as the needles used for c-section and the situation is not the same. It very much depends on the importance you feel yourself that an LP matters. In my experience neurologists would not ask for an LP unless it was significant in the diagnosis.

There is no right or wrong here, but if you decide to have the LP make sure you make it clear you want someone who is expert at them and not a trainee because it is a skill that is completely blind and by feel.

That is the best advice I can offer

 

[Nonnajay]

OMG ❤️❤️❤️❤️❤️ You all are so amazing with your advice and experiences and giving them to me when you don’t even know me ? thank you all so much.

Those symptoms I shared with you all are quite embarrassing for me . I wouldn’t just show them to anyone .

I have two bulsging discs in my back and severe back pain everyday of my life . I really don’t want to have to go through a LP . I know not everyone has had any problems with them but I know many have also. But this is sheer terror I feel about it.

Ok inwikl see if I can talk to my neuro about it but I’m just so worried he will not diagnose without it .

 

[mikeb2]

Be interesting how you do -if you do refused a lumber punch please keep us informed - has my OH will definitely refuse it, due o his traumatic experience with needles in the spine - could write the experience but don't want to put others off

 

[silkiest]

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.

 

[Raest]

My husband has issues with speech and was diagnosed with Alzheimer’s with Asphasia. However initially they thought he had autoimmune encephalitis and he had a lumbar puncture to check on antibodies so maybe they are ruling other things out.

 

[Sue741215]

OMG ❤️❤️❤️❤️❤️ You all are so amazing with your advice and experiences and giving them to me when you don’t even know me ? thank you all so much.

Those symptoms I shared with you all are quite embarrassing for me . I wouldn’t just show them to anyone .

I have two bulsging discs in my back and severe back pain everyday of my life . I really don’t want to have to go through a LP . I know not everyone has had any problems with them but I know many have also. But this is sheer terror I feel about it.

Ok inwikl see if I can talk to my neuro about it but I’m just so worried he will not diagnose without it .

I have no advice other than that given about telling your fears and finding out exactly why lumbar puncture is needed so I am replying to say that it is you who are amazing to set out your symptoms so clearly and to be proactive in dealing with your diagnosis. You are so young to have these problems in addition to your back pain and I hope that your diagnosis turns out to be curable or at least manageable . My very best wishes to you.

 

[Nonnajay]

I have no advice other than that given about telling your fears and finding out exactly why lumbar puncture is needed so I am replying to say that it is you who are amazing to set out your symptoms so clearly and to be proactive in dealing with your diagnosis. You are so young to have these problems in addition to your back pain and I hope that your diagnosis turns out to be curable or at least manageable . My very best wishes to you.

thank you lovely ?

It took me quite a few weeks to get all my symptoms together and texted to myself . I don’t physically write much anymore because I have raynaurds disease and essential tremors and my hands ache and shake quite a bit. But yes it did take me quite a while to get it all finally done.

I hope that if I am diagnosed with dementia I am able to get a book written for those going through it letting them know they are not alone because this is the loneliest feeling I’ve ever had to go through in my entire life. No one around me understands what I’m going through and nor can they . But if I can write a book explaining what my journey has been like so far, then I can feel I’ve done something good for others .

 

[Nonnajay]

My husband has issues with speech and was diagnosed with Alzheimer’s with Asphasia. However initially they thought he had autoimmune encephalitis and he had a lumbar puncture to check on antibodies so maybe they are ruling other things out.

Now that’s interesting because I have been looking into aphasia and seeing I have many of not most of the symptoms .

I’m wondering if aphasia is part of dementia ? Or if you have aphasia do you get dementia with it?

 

[Nonnajay]

Be interesting how you do -if you do refused a lumber punch please keep us informed - has my OH will definitely refuse it, due o his traumatic experience with needles in the spine - could write the experience but don't want to put others off

I will surely keep you informed hunni .

Have your partner got to se as neurologist yet?

 

[Tricot]

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.

 

[mikeb2]

I will surely keep you informed hunni .

Have your partner got to se as neurologist yet?

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