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.

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.

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.

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.

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!

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.

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.

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

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

Cliffman, when you are taking iron are you still anemic? When I was pregnant I was anemic and I wasn't absorbing the form of iron I took. I went to a nutritionist and he switched my iron to a more absorbable one and it fixed the problem. Just wondering...

My iron goes up on when I'm on iron and drops when I'm not. I took Floradix for a while during all my pregnancies, it's supposed to be gentle on your system.
I don't have any issue with taking iron. It doesn't give me adverse effects.

And no, no one said my b12 was low. I was told everything except my iron and all the bits that go with it were low. Everything else was satisfactory, I only know the b12 as it was on the bottom and I asked about it.

There was something about the artefact on the pons and I'm to get some sort of ct and lumbar puncture as an inpatient and get refered to gastroenterology.

Do you know the units your B12 was measured in? In the US, anything below 400 is considered low. However - In Europe, the measurement might be given in different units, requiring a conversion factor.

In the UK B12 is measured in pmol/mL (US is pg/ml). So Blair's 265 pmol/mL is considered within the normal range in the UK (180-1,000pmol/mL). However as in the US the range reference is considered outdated by some physicians.

Here's a link to a UK website which explains it quite well:
http://www.drsharmadiagnostics.com/v...deficiency.htm

Blair it won't hurt to start supplementing with 1000mcg of oral B12 methylcobalamin daily for 3 mths, see if it helps, then reduce to a maintenance dose of 2-3 times weekly. Take it on an empty stomach at least 1 hr before food. Stop taking it for about 1 week if you're having a blood test - it can give a false high reading.
For more info check the B12 sticky: http://neurotalk.psychcentral.com/thread85103.html

Another thing to consider is that both your low iron absorption and B12 could be linked to gastro problems. Are you taking any probiotics to help with the stomach issues? All the best for improvement.

Link to website with conversion chart for those wanting to compare different ranges for tests in different measurements:
http://www.globalrph.com/conv_si.htm

Though I know you've had spinal issues--
 

--that may well be related to your symptoms, given your low B12, and the anemia that responds to iron (at least when you're on it), have you ever been tested, either serologically or by endoscopic biopsy, for celiac disease?

There is the possibility that you have both spinal issues and autoimmune ones--none of us are spared the possibility of co-morbidity, unfortunately. And when people have more than one condition the investigation/diagnostic process is just that much more confusing.

I've been refered to to gastroenterology for testing of digestive and absorption issues.

Lumbar puncture
 

I got my appointment for lumbar puncture and other tests in the post yesterday.
I go in on Thursday.
My mum has ordered me some b12 tablets same as the ones she takes, I'm also on iron tablets again so she gave me a pot of vit c tablets to take with each iron tablet.
Mum says that b.m.a. Says lower level should now be adjusted to 300-500 depending on age.
No matter what else happens I'll be taking supplements to do something to help myself.

B12
 

Hi. Bluesfan wrote this but in case you hadn't noticed there is a certain type of B12 that is considered to be the best for many reasons. I'm not sure what your mom was going to order for you. I take 1000mg of the sublingual form everyday. There is a link Bluesfan included and other information on this forum on the subject of B12.

B12 methylcobalamin.