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-   -   How many tests?! (https://www.neurotalk.org/peripheral-neuropathy/228092-tests.html)

Blairzo 10-30-2015 04:41 PM

How many tests?!
 
After having an armful of blood taken at my last appt. I have had a scan of my brain and complete spine. I got a call from consultant saying they were keen to get me in for more tests. I also got a call from GP saying I needed to contact them urgently.
Call 1. gP. The doctor wants to see you immediately, ok when will I come?
I have an appt in 3 weeks. Hmmmm that's not very immediate!
I have a cancellation for next Monday? Well I'd better take that then!

Call 2 hospital. Just returning call from consultant, asked me to call the medical secretary to sort something out. Ok, name dob etc. yes you need to speak to doctor, I'll take your number and get them to call. They have my number! They called me and told me to ask you to sort something out for further tests? Yes that's right, but you need to speak to the doctor.

Call3. Doctor. As a result of your blood tests and further to your scans and your assessment on your appointment I'd like to get you in for some more tests, we'll start with lumbar puncture, emg, ncs, and take it from there.
Get in touch with the med secretary and they sort out a date, sometime in next 2-3 weeks. Oh and have you seen the GP yet?
No, on Monday. First avail appt.
oh well you should have been seen this week, you are very anaemic again, looks like past 7 years you have gone from iron tablets to anaemia and back again, we'd need to know why. You will be getting gastroenterologist appt to check that out too. They probably find out why you lost so much weight, it's not good. We'll talk about rest of bloods at next appt.


And this is the start of my journey. It feels like a roller coaster with some stops along the way.

What do they need the lumbar puncture for? And what is an EMG? I know nerve conduction study.

This is why I don't like hospitals. I saw pain clinic who refered me to pelvic physio, who refered me to urology,who refered me to neurology thru GP. Who are referring me to gastroenterology.
All because I lost the feeling to my bladder!


It daunting and to be honest a bit worrying.

Susanne C. 10-30-2015 05:15 PM

It does sound worrying, very much so. I would try to get your GP to explain as much as possible the reason for all this, there must be something they suspect, or several somethings, try to connect the dots.
Just my opinion but I would put off the lumbar puncture until last unless they have a compelling reason. My neurologist at Johns Hopkins offered me one as a sort of last resort after my other test results were in. When I asked if it would show anything or affect my treatment, which was none, he said not really. So they will do them without a clear benefit if they are just grasping in the dark. I would want more than that to submit to the procedure.

northerngal 10-30-2015 08:10 PM

I'm not sure what sort of testing will be done for the loss of feeling in your bladder. But, possibly they want to follow up on the anemia. unless you have a reason--(like heavy menstrual bleeding), an upper GI and colonoscopy are often done.

bluesfan 10-31-2015 02:22 AM

Blair

Just a tip - when you see your GP ask for a printout of all your test results - then if you have any questions to ask on NT you have the numbers at hand.

All the best for the next appts.

Blairzo 10-31-2015 03:42 AM

Thanks for your replies.
The neurologist thought that I had some sort of auto immune problem causing the problems in my legs and feet after the lumbar MRI showed problems but not enough to cause the symptoms.
I wasn't expecting to have a second MRI on brain and complete spine.
I still can't tell where my big toe is when I'm walking and the Middle toes keep going very sore with pins and needles, my other leg I get extreme pain from the muscles in my thigh jerking and twitching and it feels like my knee is being pulled out of joint and a nerve is pinging in time with the twitching and spasms.
I keep getting buzzing in my feet and I can't stand anything on my right foot in bed so it's constantly stuck out of the bed!
My stomach is giving me trouble, I eat breakfast and it's gone thru by lunchtime. Lunch has gone by about half two and tea time ,if I eat, has gone by bedtime unless I seem to be having a better day and then I'm up by half four in the morning. No wonder I'm losing weight! If you get crippling pains or you feel like your food is just sat in your stomach then it kind of puts you off eating!
I'm feeling pretty rough to be honest, but I am still working so I am very grateful.
Is EMG same thing as a nerve conduction study?
I am kind of dreading lumbar puncture as I have had surgery twice at lower lumbar levels. I have quite a bit of keloid scaring and it difficult for pain clinic to get accupuncture needles in that area due to the scaring and muscle tension.
I need to understand why instead of going in blindly for these tests but it never occurred to me to ask at the time!
I will ask GP for a copy of results if they have a copy of them all.
Thanks folks!

bluesfan 10-31-2015 01:22 PM

Hi Blair
Just something else to consider with sudden weight loss - see if any of your tests have included cortisol. Do you have any other symptoms eg fatigue, loss of energy, unusual darkening of skin, random hiccups?

It sounds like they are being thorough so hopefully they'll find answers soon.

Let us know how you get on.

Blairzo 11-01-2015 03:08 PM

Hi blues fan, yes I'm fatigued, but I'm anaemic again and I suffer fatigue from a brain injury I got a few years ago in a car accident.
I've no idea if they tested cortisol although I will ask for the blood results tomorrow if mg GP has them, if not it'll be when I get into hospital in the next few weeks.
I am suffering with a chesty cough and sinus cold at the moment. I'm feeling quite low.
I just want to be sorted out. I'm fed up of waking up with cramping stomach in the early hours of the morning.

Ragtop262 11-02-2015 09:09 AM

Quote:

Originally Posted by Blairzo (Post 1180744)
Is EMG same thing as a nerve conduction study?

I don't think anyone answered this question for you. Here is a link that explains the two procedures and what they are used for:

http://www.webmd.com/brain/electromy...uction-studies

Blairzo 11-02-2015 02:01 PM

I got my results back today. Everything is satisfactory according to the doctor apart from my iron and related bits and pieces. I did remember to ask about b12 and it is 265.
I'm back on iron and in a waiting list for gastric investigations. They want to test the absorption or something because I go on iron and then I come off and get anaemia and then go back on it again!
I forgot to ask about cortisol! Never mind. I actually like the chap I saw tonight, well worth waiting to see. We don't have a GP named anymore.

Cliffman 11-02-2015 04:03 PM

Quote:

Originally Posted by Blairzo (Post 1181182)
I got my results back today. Everything is satisfactory according to the doctor apart from my iron and related bits and pieces. I did remember to ask about b12 and it is 265.
I'm back on iron and in a waiting list for gastric investigations. They want to test the absorption or something because I go on iron and then I come off and get anaemia and then go back on it again!
I forgot to ask about cortisol! Never mind. I actually like the chap I saw tonight, well worth waiting to see. We don't have a GP named anymore.

Has anyone flagged your B12 as being too low?

Cliffman


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