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No diagnosis!!!!

Niks

Niks

Hi Guys

I think we are definitely in the Undiagnosed club!!

My daughter has been through 'gynae problems' at aged 15 and up, had her perfectly healthy appendix out, had 2 keyhole surgeries to look at ovaries, last one showed 'inflamed bowel'. Symptoms died down for a while. She has then at 18 had bleeding. Her colonoscopy showed 'inflamed bowel' She was given Pred suppositories. The bleeding died down, but as soon as these stopped she started bleeding again and had severe abdo pain and some vomiting, which then ended up with her vomiting everything, including fluids (Nov last year).

She has had lost 2 stone in weight. She has had endosopy, attempted barium meal, this didn't go through her system and got stuck in her stomach! Xrays and scans. We have been through, proctitis, colitis and crohn's diagnosis, which has all been taken away and now coeliacs.

She is on a strict gluten free diet and is not getting any better! As soon as her Pred gets below 20mg she becomes very sick again. She has been hospitalised since November 5 times now. Last week she was vomiting blood clots! Her IBD specialist has now said that the pred is not treating any inflamation and to wean right off it. He has given her stronger laxatives as he feels she gets obstructed, causing the sickness.

He has even suggested that 'the thought of food' makes her sick!!!! This is so frustrating, she is in pain constantly, her bloodwork always comes back okay and when on pred all her camera tests come back clear too. She has not eaten anything with gluten in since mid December.

She often vomits within minutes of eating, and she is getting very distressed that no one seems to know what is wrong with her.

It seems that there are a lot of storys like my daughters on here! It is good to vent!
 
StarGirrrrl

StarGirrrrl

Location
UNITED KINGDOM
I'm so sorry to hear of your struggles. It sounds to me like you need a new Dr. Once they start suggesting "mental" aspects it usually means it is time for someone new. Because the Dr who suggested that has run out of ideas.
I think it may be beneficial to have repeat tests when off the Pred.
You could consider going to your GP and asking for an urgent referral to St Marks in London which is a national specialist GI Hospital.
 
I

Ihurt

Location
United States
It sounds like she needs to see a gastroenterologist who deals in motility issues of the gut. Her symptoms sound a lot like gastroparesis. I would see if you could get her into a GI doc who specifically deal with motility disorders of the gut....
 
Niks

Niks

Thank you! A few people have suggested that.. Have talked to her nurse about this. Some of the docs in hospital have said this too, but her consultant doesn't think so!!!
 
Niks

Niks

Ondansetron not working. Being very sick and now feels really light headed and has bad pins and needles. This is new!! Any ideas??
 
I

Ihurt

Location
United States
Honestly, I would tell teh consultant that you want her tested for gastroparesis. Also, have they checked her thyroid at all??






QUOTE=Niks;574839]Thank you! A few people have suggested that.. Have talked to her nurse about this. Some of the docs in hospital have said this too, but her consultant doesn't think so!!![/QUOTE]
 
Niks

Niks

Okay I will talk to her nurse as soon as I can. I don't think her tyroid has been tested either.

Do you know of anyone that's had the pins and needles sensation? She has in the passed felt light headed and fainted but the pins and needles is new :/
 
Niks

Niks

J's pins and needles now spreading from fingertips all up her arms, her toes, up her legs and all the way up her back! She is also getting bad headaches. It has been suggested her B12 levels need testing? Anyone else think this? going to talk to her IBD nurse tomorrow.
I will ask again about getting her tested for gastroparesis.. We also have an appointment in the week with our GP, hopefully we can get a referral to St Marks
 
Lustforlife

Lustforlife

Location
Georgia
I hate to be the person to say this (I seriously considered just being quiet), but I want to throw something out there in case it helps in the long run, but may concern you more in the short run... The symptoms of tingling pins/needles and headaches sounds very much like MS. My stepsister has this, those are her main symptoms. MS is also an autoimmune disease.

I will say that you can absolutely destroy yourself psychologically by trying to figure out what's going on through reading on the Internet. I'm guilty of this, and looking back I wish I followed this advice: get an appointment with your doctor and in the mean time focus on what best relieves your symptoms at any given moment. Don't dwell too much on what could be wrong. (For laughs: googling my symptoms once came back with results that I may be pregnant. I'm a male.)
 
Niks

Niks

Hi Lustforlife

Thanks for your advice and yes you are right! It is just so frustrating when you are watching someone who is so ill! MS is something that came up, but with everything else going on with her there are a million and one things, just trying to pin it down so she can get the treatment she needs.
 
bozzylozzy

bozzylozzy

Location
Sheffield, UK
Hi Niks, it must be so awful to see your daughter so ill :(

Just a note on the pins and needles - I too suffer with that and severe headaches.. i also get a strange spaced out sensation where i dont feel with it. I have a chiari malformation (which has similar symptoms to MS) this is quickly determined via MRI scan.
it can be linked to IBS (which your daughter clearly doesnt have!!).. BUT - chiari can be linked to connective tissue disease (such as hypermobility and lupus). and certain types of connective tissue disease can cause your body to attack your bowels..

i know its like a "tedious link" but.. its always worth knowing there are lots of avenues to explore if you ever feel you have hit a brick wall!

good luck, and make sure you keep us updated - i hope you and your daughter get some answers soon :hug: xx
 
Niks

Niks

I spoke to her nurse today, I asked if her B12 levels had been tested. She said they had but and they were slightly low, but not anything to worry about. I asked her when this was, OCTOBER!!!!! She has been so poorly since then, admitted to hospital 5 times... Was not happy, she is getting her tested this week. Why do they not think of these things???

She is at the moment in pain, feels nauseas, has pins and needles and shooting pains all over even on her face and feels very light headed and 'just not right'. She won't go to the hospital as her GP has suggested because she feels her GI doesn't think there is anything wrong with her. She looks absolutely terrible! I feel so bad that I can't do anything to help her :(
 
bozzylozzy

bozzylozzy

Location
Sheffield, UK
that is ridiculous - but i only know my CRP levels. the doctors never told me what blood tests they do/did.
on my 1st rheumatologist appointment.. he pointed out that my calcium levels had been consistently low over the last year... which was complete news to me. low calcium can cause pins and needles too, especially across your mouth.

im sure you are already - but keep a close eye and make sure you are in the know of what her doctors are doing. you see what she is like day in, day out - and you are the objective one to make them see how you daughter has actually been
 
D

dannysmom

Location
NY
Hi Niks. You may want to start getting copies of ALL tests results. I am not sure how easy that is by you but could be worth doing. (Although I have done this for 4 years now and still have no answers.) Will the GP do the bloodwork? or do you need the GI for that?
 
Niks

Niks

We are waiting for the blood test paper work from the IBD nurse. Hopefully we can get it taken tomorrow.

Would I need to ask the hospital or GP for all her results?????
 
Niks

Niks

Okay thank you! I just wonder if the GP has them all, even one of the Doctors said they hadn't looked properly at a colonoscopy that she'd had done as an emergency in another hospital!!
 
bozzylozzy

bozzylozzy

Location
Sheffield, UK
I work in private health - and all clinics, tests and hospital stays are reported back to your GP (i know this, because we get copy of the letters during claims.. only when consent given by the patient of course)

The specialist will write back to your GP when they see you to say what there thoughts/observations are and plans for treatment etc.
 
D

dannysmom

Location
NY
My son's GP definitely does not have everything ... especially test results. I ask for all reports from the doctor that wrote the orders. I also read all orders/prescriptions prior to getting the blood drawn to see exactly what is being tested because many times not all test results are sent to me when requested. I've had to ask up to 5 times for some results. The staff is not always familiar with tests and sometimes they may be done locally vs sent to another lab so results end up in different prts of the computer systems they use.
 
I

Ihurt

Location
United States
You may be able to get some results from the hospital. I always get all my reports and such from tests I have had done from the hospital library. I like to keep copies of all my records.

The pins and needles feelings Could be a sign of MS, but it can also be a sign of other things, like neuropathic issues. I had the pins and needled feeling all over my body before. They could not figure out what it was, it finally got better.

I think you are right in getting her bloods checked again. I would also ask to see a neurologist if the pins and needled thing keeps happening. This is their speciality. I feel so bad for your daughther. I know you feel helpless not being able to help her, but just being there for her is a huge help I am sure.. I would give anything to have my mom back:(. She passed away 10 years ago...

Hang in there and keep pushing for answers.
 
bozzylozzy

bozzylozzy

Location
Sheffield, UK
adding to what dannysmom says - the consultants should be reporting back to your GP - but we all know that what *should* happen... doesn't always happen! hahaha!

and after seeing countless clinic letters through my job - consultant reports vary greatly! from those who write thorough reports, to very vague ones. just depends on the doctor i guess :p
 
Niks

Niks

Thanks Catherine!

She has now been admitted, we're waiting to see what the Docs plan on doing. Will keep you updated
 
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