I need to calm down : well what can I... - Functional Neurol...

Functional Neurological Disorder - FND Hope

5,624 members2,935 posts

I need to calm down

Chelle2017 profile image
9 Replies

well what can I say annoyed doesn't come close .I know I'm not supposed to get my blood pressure boiling and to stay positive but I can belive whats going on .I had a new mri( ive not had a copy of results) the other month and I went back last week for a review . I must admit we kept the dr longer than 10 min infact we were in for about 30 mins altogether mainly because I've paid for my files and there was a few things I wanted to disscuss. first question was about results of my Mri which I had to ask him for then he says oh there no change from your last one I thought fair enough. Then I explained and showed them some of the blood results I had done when I was admitted in hospital last year and most of them he said didn't need redoing and not to worry about them .a couple he said to redo just to make sure of the outcomes and then one of them my mcv level he said yeah hmmm that's on the low side but its fine as you are of menstruating age (I don't have mensturation ) I told him this and that as I have a syndrome that prevents this I'm concerned about it being low he said ahh but its fine as your iron results are ok and I replied I think youll find they are only partial ones and that the ferritin one was low so he said hmm I look into it . Heres the bit I'm annoyed frustrated etc about I received a letter today that has been sent to my gp saying I have microcytosis(without anaemia)ididnt know anything about this and that this test should be done in 3 months now only for me buying my files and bringing the blood results to his attention this would have not been seen or kept an eye on . I want this doing before 3 months as it has now been 11 moths since I first had it done . also in the letter it has said the recent mri did not show any evidence of a new stroke errrrrrrrr I haven't had a stroke ive been told its fnd (I was taken into hospital for a suspected stoke was told I hadn't had a stroke then told a had then told I hadn't all within a few days ) now hes said that I give up I'm beginning to lose my faith in drs . I'm going to see my gp in the morning I'm hoping he will reassure me and have an idea of where we go from here .sorry about the rant but the only place where can vent is here as when I do it with others they think I'm clutching at anything due to them thinking I'm trying to get rid of the fnd box ive been given and I'm not I just don't want other things to be dismissed just because ive got fnd does that make sense ? xx

Written by
Chelle2017 profile image
Chelle2017
To view profiles and participate in discussions please or .
Read more about...
9 Replies
_confused_ profile image
_confused_

Hi chelle2017

Sorry to hear about all your problems and I totally understand how worried and frustrated you must be. I was told I had anaemia and was given ferrous fumerate until whenever, just keep taking them, although I was under the assumption that you need regular blood tests to check that the body is storing iron and also to check your not overdosing. I was also told I had to take a 7week course of a very high dose of vitamin D, as my bones were in a lot of pain. Both of these have not been checked since or mentioned although at the time the doctor said they will need to be checked as if my body wasn't storing both there might be an underlying problem. It seems like we are forever chasing up things and having to remind the doctors. I am dealing with my recently diagnosed fnd myself as none of the professionals want to medicate.

It must be very worrying for you, especially the bit about the stroke, although it could just be a wording error, but hopefully you will be able to get some help and answers tomorrow.

Good luck and wishing you all the best

Ali :)

Chelle2017 profile image
Chelle2017 in reply to _confused_

aw thanx ali :) it probably is wording but we should not have to chase and chase to get answers when we all know stress doesn't help xx

Hi I'm trying to stay of here after a comment yesterday but I'm concerned by your specialists lack of interest in your MCV results.

Even if your iron levels are ok the fact the mcv is low means your red blood cells are smaller than normal and as most of us know from biology your red blood cells are pretty important for carrying o2 through the body then co2 out. Also your ferritin levels being low indicates a problem with the mcv. Ferritin is a protein that stores iron in cells that indicates iron levels. So if your ferritin is low and your mcv you should be getting further testing.

It could be a vitamin B12 deficiency or a malabsorption issue such as gluten intolerance or coeliac but should be looked at especially if you have symptoms such as shortness of breath, palpitations or problems with your intestinal system

Chelle2017 profile image
Chelle2017

well I went to my gp this morning and has agreed to re run the tests he doesn't think there is anything to worry about but he was great and listened to me so I went straight off and had all my bloods redone :) I have ibs too and other medical issues too many to mention but my gp listened to me and allayed my concerns fingers crossed it was a one off xx

So it could be related to your IBS. That could be a reason for the mcv and ferritin being low.

Hope it rules out a worry x

Chelle2017 profile image
Chelle2017

dr said it could be anything as a few of my meds can make it happen so we shall see from the outcome fingers crossed it will be simply sorted x

It's amazing that meds just can't be created that do their job and don't give us side effects or other issues.

Everything makes me ill and I think il be starting meds to suppress my immune system to slow my disease which puts me at higher risk of lymphomas

Positive thinking, need to turn it back on 😊❤️

Chelle2017 profile image
Chelle2017

lots of pma hun does wonders aren't meds a pain take them for one thing and it effects everything else xx

Chelle2017 profile image
Chelle2017

well an update everything was fine and normal so it must of been a blip x

You may also like...

I have been told by a Neurologist I have NES, I believe I have FND, Help!

ago I had what the hospital said was a stroke until I had a MRI & EEG.I was then told FND by one...

Diagnosed without brain mri

Hi all I’ve been diagnosed with fnd. I’ve not had a brain mri only a cervical and lumbar one which...

I KNOW I AM GOING TO GET EVERYONE ANGRY

everyone. I have had FND-diagnosied 4 years ago and have suffered with it for about 6 years. It has...

Had enough.. need to know I'm not the only one.

Hello, I'm 26 and suffer from FND.. It was mentioned a few years ago in hospital and then forgotten...

Newly diagnosed need advice

like behaviour so we rushed him to A&E as he had never had anything like this before. Hospital...