Been MIA for some time- still no diagnosis.

[StarGirrrrl]

Hi folks, after an extended break due mainly to personal issues I am back on the forum, yay :dusty:

Still no diagnosis though :voodoo:

Since August I have been symptom management with the Fatigue service (fairly useless) and Pain service (fairly useful, due to start last option, special Physio, in 10 days).

Also had a brain MRI due to memory blanks which came back normal.

Two months ago my GP tried me on a new pain medication, Naproxen 500mg twice daily which has improved my joint pain enormously. Yes I know it's an NSAID but the relief is amazing and right now as far as I am concerned I don't have IBD. Also taking Omprezole 20mg once daily as stomach protection which I know is working because in the past never been able to take regular doses of NSAID's for more than 2 weeks before I have to stop.

My new Rheumy has proved fairly useless and has pretty much consistently fobbed me off with "do symptom management come back in 6 months". I saw him a week or so ago and he refused to do anything more to diagnose me. I have a formal complaint going through the system now, asked for an independent review of my case and said being fobbed off isn't good enough.

Just before Christmas my mother broke her wrist and the caring and household responsibilities which fell to me have been a huge burden and my general health is really in the toilet, things are awful. She got her cast off this week but it'll be another couple of months before she is fully healed.

2 weeks ago I strayed outside my safe foods and kicked off the mother of all flares. Never had one last more than a week nor one with so much recurrent severe pain. I think i'm going to see my GP next week see if I can get a CT scan or something. Really don't want to see the Gastro dept again nor have a colonoscopy. Still can't eat properly but i'd say it's about 20% D and 80% pain (up until 3 am this morning with pain). Unusual for a flare up of mine. Can keep more food in now and having good BM's at my normal time but something still isn't right and that concerns me. I can have a day with no D but terrible pain. Seems to be worse in the evenings although last couple days guts haven't been too happy at lunchtime which again is unusual for a flare up.

So, in summary, things are worse than when I left the forum.

Really don't know what to do about getting a dx. Two Rheumy's have failed (one now works at my back up plan Hospital so really what would be the point), not enough evidence for Neurology and hell will need to freeze over before I go back to local Gastro team.

oo:

 

[Jennifer]

Glad to see you back on the forum StarGirrrrl! Not happy to hear about the recent flare though and everything else. :hug: Hope your GP will be willing to run some tests to see what's going on. Keep us posted. :ghug:

 

[StarGirrrrl]

Thank you Jennifer.

Last night I had spectacular D (despite only having rice and bread for dinner) which admittedly did stop once I had taken some lopermide, and hours of intense pain, not much better this morning so went to A&E.

Nurse was ok but I felt she didn't really get what I was trying to say. Wanted to take some blood tests but couldn't get cannula in (not her fault I have awful veins) so said would wait for Dr to do. Then an hour later said it was a 3 hour wait to see Dr so sent me off to the on site GP service. Didn't even have access to my Hospital records.

He gave me a through belly exam and said to increase pain relief so 6 co-codamol on top of the Naproxen for a few days. If it gets me out of this flare I will be grateful but eating enough 3 times a day for the pain meds is going to be tough.

He suggested I see my GP for a review and see if anything else test wise could be tried but honestly I don't see the point, I can't continue to fight for help I don't have the energy when no-one will help me anyway. I already asked the Hospital complaints service for a medical review no point repeating this when I don't have the strength.

 

[UnXmas]

Hi, it sounds like you've been suffering for a long time. I just wanted to warn you that making official complaints about the NHS (I see you're in the UK, so I'm assuming all this is NHS) can be hit and miss, in my experience. I had a load of trouble being misdiagnosed and mistreated too - I have multiple conditions, which confused things, but basically no one took me seriously and I was, as a teenager, forced into in-patient treatment for anorexia, because I was losing weight, even though I kept saying there was something terribly wrong with my stomach.

My complaint to my GP surgery who referred me to the psychiatrists was extremely productive - I got written appologies, the practice manager assured me they'd take care to avoid similar cases in the future, and my medical records were amended to try to stop the terrible discrimination I kept experiencing from doctors when they saw a mental illness listed on my record.

On the other side, the complaints against the psychiatrists and the gastroenterologists who discriminated were awful experiences for me. They basically insisted that I was just crazy and they were never wrong, ever. It went to the independent ombudsman, which was completely useless also.

Just be aware of how defensive doctors can get when they fear they've done something wrong. They will never admit a fault, because they know that if they do so you can hold them to it legally. They won't care about the truth, and they won't care about things such as your suffering.

Asking for a second opinion (or more than a second, if you've passed that stage) about your situation may be helpful, but I'm not sure whether an independent review will bring the results you want. So just be prepared. My situation was extremely complex and ran over many different hospitals over several years, so perhaps your experience will be far better than mine was - I certainly hope that will be the case.

As for being undiagnosed, I hear you on that too. Besides Crohn's, I had a load of neurological and endocrine problems - plus some things that seemed to be classed either as neurological or rheumatological depending on which doctor I spoke to. Ironically it was when I gave up all hope of being diagnosed that I was given diagnoses, though some of my symptoms are still unaccounted for, and I plan to leave them that way. I reached a point where I just stopped caring what was wrong - it was clear that whatever was wrong with me was so far from the experience of any doctor and so dissimilar to any other ill person, it was better just to accept that I was a complete anomaly in many respects. The diagnoses I did get turned out to be anti-climatic. Doctors still discriminated against me; they still accused me of faking or wrote things off as stress when my symptoms were more severe than tests indicated they should be or when they deviated from the expected courses of the diagnoses I'd been given. The really good doctors I've found don't care about my diagnoses or my test results - they try to help me based on the problems I tell them I'm suffering from.

So my advice would be don't get too hung up on a diagnosis if it's not forthcoming. Some of us just can't be categorised like that.

 

[StarGirrrrl]

Thanks so much for your post. I've done the complaints process a few times, and found as you very aptly put it, it can be hit and miss! Just wanted to try. In the past there have been little things here and there but never followed up on- for example a bone marrow biopsy was considered but dropped without explanation, or a scan is reported to me as normal yet I later find out there was something reported as slightly enlarged (thymus gland)- not followed up. I hope a review might pick things like that up.

Guess if that gets me nowhere I will see my GP about seeing another specialist but where or in what field I am still scratching my head over.

I think I could accept being undiagnosed better if it weren't for the fact I just get sicker and sicker- I am almost 27, still living at home, too sick to work (so poor), single, childless, the list goes on. None of that is going to change until my health improves and that's not going to happen unless I get a proper diagnosis and proper treatment, instead of a piecemeal basis like now. The effective painkillers for my joints are wonderful and i'm so grateful for them, but that doesn't help the bowel flare ups, nor the fact that I am having more and more days when I can't leave the house. They make my days more comfortable and that is wonderful in itself, but it hasn't really gotten me any of my life back. I'm not aiming for a cure, just to get a little better to be able to progress in some way so that I get one or two of the things everyone else gets. I've enriched my life at home to make things more tolerable but i'm still surrounded by many who have everything I want when i'd settle for one or two of their blessings.

I can't accept a life like I have now as all I will ever get and that means for now I can't accept not having a diagnosis. I've been looking for one since I was 19 pretty much. I was sure the response to the painkillers would make them look again at my case. I have had so much tried which all failed, sometimes spectacularly; like the 39 day hefty dose Pred, at the end of which my inflammation was higher than before I started! It also trumps an opinion given a few years ago that I was unlikely to have an inflammatory disease by a specialist. But it didn't seem relevant to my Rheumy and that's the angle I am perusing at the moment. He says unless something new comes up he won't do anything. To me that response is new!

I've seen a friend who has been through similar to yourself, a diagnosis after many years which doesn't lead to much progress health wise and terrible Drs still. I've had my eyes opened in that respect. But still I can't/won't settle for the life I have now, so somehow I need to keep trying.

 

[Jennifer]

If there's anything we can do to help let us know. :ghug:

What tests have you had done altogether since your symptoms started (one's relating to your bowel, could you mention how many times you have those tests done, a rough guess is fine), also which tests have you had done within the past year?

 

[StarGirrrrl]

Well the super doses of pain killers are working, a bit spaced out although I am now eating quite a bit which is good... Managed 2 doses of Co-Codamol tomorrow I will do 3 just can't manage 4! But the GP I saw did say 3 would be ok for 2-3 days.

Jennifer in the past I've had a flexible Sig, colonoscopy, upper endoscopy, all with biopsies, and a bacteria test for small bowel bacterial overgrowth.

Capsule endoscopy was refused (didn't meet funding criteria) and laparoscopy surgery refused (arrogant surgeon).

In addition i've had a full body CT, ultrasound of organs, full body PET/CT and full body WBC scan. The latter, which I had done early on, found inflammation in my guts but this has never been found again since in superior tests. An ex GI called in a radiologist to change the result to normal anyway when his subsequent tests didn't find anything.

I can't recall any tests being repeated more than once besides bloods. My Rheumy doesn't want to subject me to more radiation unless he deems it absolutely necessary. Up until Jan 2013 I was seeing a great Rheumy who although scratched his head alot always found something for me to try or a new avenue to look down. But he moved Hospitals.

My ESR is always normal and my CRP is always modestly raised. Inflammation also comes back high routinely in C3/C4 compound blood tests.

In the past year i've had a brain MRI, some bloods Jan 2013. That's it my Rheumy has been pushing symptom management. I am interested to see where my CRP is now given the strong response to Naproxen, maybe that's something GP will agree to.

While my bowel issues are severe and don't fit with IBS (occasional passing of blood and have always since day 1 7/8 years ago needed to get up during the night) I remain unconvinced the origin is in my bowels. I think it's some kind of exotic auto immune disease causing bowel issues rather than a bowel centred disease which throws off the other problems. I could of course be wrong. This flare has definitely been pain centred, I have on and off been able to eat and despite the pain had some good BM's at my normal time.

 

[Jennifer]

When's the last time you saw your GI for tests? You've only had one scope? I see a lot of people on the forum mention that they had to repeat some tests many times before something was finally found to give a diagnosis. Inflammation can come and go so quickly so if possible you may want to have another colonoscopy done and talk to your GI about having a Double-balloon enteroscopy done to look through your entire small bowel if you can't have a pill cam done.

If you haven't already then it would be good to get the results of your tests and look them over because sometimes if a doctor doesn't think it's a big deal they simply don't mention it. Also another reason why you may want to repeat some of the tests is because some radiologists are better than others and may see something that another may miss. MRIs don't give off radiation so you could have those done on your bowel and joints as well.

 

[StarGirrrrl]

I missed off the barium x-ray, i've had quite a few MRI's of my joints too and also a nuclear bone scan (which interestingly found a "hot spot" on a joint I wasn't having problems with at the time but now do come to think of it).

I'm not seeing a GI at the moment, seen 3 and they all proved useless, I was discharged twice by them after normal tests and the third time I discharged myself because at that point I was fed up and things were moving in a more general auto immune direction. Because I have previously been diagnosed with IBS by them twice (despite red flag symptoms because the tests were normal) it proved very hard getting them to have an open mind.

It's definitely a good idea to get hold of my notes and look through them myself. It is a long, expensive process (if you want copies) in the UK but it can be done.

I will consider seeing my GP asking for some repeat tests because Rheumy is not willing at this point in time and I do not see him again for 6 months.

 

[UnXmas]

I think I could accept being undiagnosed better if it weren't for the fact I just get sicker and sicker- I am almost 27, still living at home, too sick to work (so poor), single, childless, the list goes on. None of that is going to change until my health improves and that's not going to happen unless I get a proper diagnosis and proper treatment, instead of a piecemeal basis like now.

I'm in a very similar situation. My illness is progressive, and I'm already at the point where my parents are caring for me. I can still do some things myself like washing, managing my stoma, I can walk a bit, but it's only going down-hill, and getting diagnosed just confirmed that. Though getting the Crohn's diagnosis did result in treatment - it's just Crohn's is such a minor hindrance compared to my other problems, and my surgeon was prepared do perform my ileostomy surgery (which I absolutely love! it's improved my quality of life so much) regardless of my diagnosis.

So, by necessity, I'm a big believer in getting on and living with the illness, regardless of diagnosis and treatment. But I admire you if you can keep fighting for the treatment you need. If you believe there is a chance that your health could be improved, keep seeking treatment! (Though that might be possible without a diagnosis, if you find the right doctor or get lucky in trying out meds, surgery or whatever else stands a chance of helping your symptoms.)

I hope my point of view doesn't sound too pessimistic, but giving up on getting better was actually one of the best things I've done for myself. The constant trying and failing to live a "normal" life just got overwhelming, and giving in to increasing disability actually saved my sanity, and I'm much more at peace with myself and my life now, and able to focus on the things that I still can do rather than desperately scrambling to keep up with my previous expectations and with practically everyone else. (The sense of failure does of course still rise up sometimes, but it isn't with the desperateness and depression that it used to be before I just accepted that I wasn't getting any better. And the worst thing is jealousy, but I've come a long way in trying to be happy that others have normal lives, and still working on it. In fact overcoming jealousy is my main focus right now, I think it's the one thing that will help me the most if I can do it.)

My circumstances are very unusual however, and I didn't give up on trying to be "normal" until I really felt I had tried and tried every possible thing I could think of to change things. Having a progressive, extremely rare neurological condition (the symptoms are very similar to MS - which is a much more common condition that most people have some understanding of) that doctors fail to pick up on for so long is highly unusual (in my case almost entirely a result of their conviction that originated with the anorexia diagnosis and developed into accusations of Munchausen’s - because of course mental illnesses can be that interchangeable :yrolleyes: ) - if you've had a lot of tests that have come back with no significant abnormalities, as frustrating as it is to be without a diagnosis, you can at least have some hope that whatever is wrong with you is not necessarily going to continue to deteriorate and that effective treatment may yet be found.

 

[StarGirrrrl]

UnXmas, I don't find your reply pessimistic at all I accepted several years ago my life at the moment was how it had to be for now. I got a great deal of peace from that, although of course there is depression and jealousy. I found small things I could do and take pleasure in those.

What i'm not ready to do yet is accept this as my life forever which is why I keep trying to find a diagnosis, and I do (most of the time) have hope this is going to happen, and that there is room for improvement.

Anyways, things have moved on yet again. Had a good BM this morning but vomited 1 hour after my first dose of codiene. With that and how ill i've been since starting it I decided it was wise to stop. That means though the abdo pain has come back with a vengeance, similar spot again. Haven't decided what to do yet.

 

[Astra]

Hugs StarGirrrrl, I can empathise, I've been MIA too, just waiting for an apt for surgery.
I had to wait for nearly 15 years for a diagnosis, I think once the right specialist/doctor/gastro/decent GP comes along, you'll get your dx.
It never ends, I spoke to a pig ignorant surgeon on Friday, 5 mins, in and out, told to wait for a letter, goodbye.
He even called me obsessive compulsive!!
What? Cos I'm ill, in pain, no meds, tried everything, assertive, demanding, persistant.
I give up!
Hope you get something sorted soon xxx

 

[Cat-a-Tonic]

Hey Star, glad to see you around the forum again, but sorry to hear your update is not a good one. Out of curiosity, how long has it been since your last c-scope? I know (from firsthand experience) that it's frustrating to repeat tests, only to have the same "normal" result yet again. Still, with the worsening symptoms you describe having lately, it's worth keeping an open mind about possibly having more scopes, especially if it's been a few years and your symptoms have evolved/worsened over time. It's also worth considering that the NSAIDs you're taking are in fact making things worse - that's a possibility. I hope you can find a doctor who will listen - I am sure that you can improve your quality of life, but I'm also sure that you'll have to keep fighting to get there. I know you're a fighter though, you can do it.

 

[StarGirrrrl]

Cat, I can't recall exactly when my last c scope was. I know my upper endoscopy was about 2-3 years ago and the c scope was a year or so before that. I'd do the upper again only if I was given a general anaesthetic (because I had such a bad one) and the c scope was a breeze honestly, it's just the prep that got me.

Things moved off in an auto-immune/ Rheumatology direction which is why it's been so long since the scopes.

I suppose I need to consider the benefits of having those again, i'd just rather try other directions for a bit longer (yes I know I am procrastinating).

:hallo3:

Thank you to each and every person who has been kind enough to reply. I take all your comments on board and it gives me something to think about.

:ghug:

Luckily although the codeine made me so sick I had to stop, those 3 doses obviously did what they intended to since the pain went away and i've been eating normally for some time now.

Sadly a few days after I came out of the flare I got an awful cold. So after a solid month pretty much of being sick for one reason or another I am finally on the mend.

The PALS team contacted me about my complaint, no change in the opinion of my Rheumy, he even said he thought things were going well, why I have no idea because he could see how upset I was at the last appointment.

Anyway, I have confirmed with PALS that I do want an external look at my case, and they are going to get my Rheumy to arrange this for me. Another couple of weeks and I should know more.

 

[Axelfl3333]

I also have found some consultants to be closed minded or basically arrogant pricks it's absolutely infuriating,had an accident recently hurt my right knee badly blew up like a balloon gp sent me to orthopedics was basically dismissed out of hand because I,m overweight didn't,t want to know what happened.formal complaint before I left the building it's so maddening,must be worse for a lady if your really thin through this as they,ll obviously go straight to eating disorder.sorry I,m mad now

 

[StarGirrrrl]

More news sooner than I was expecting which is good.
Very happy my Rheumy has written to a Rheumy at another Hospital so I will be getting an external look at my case which is what I wanted. Relatively easily travel wise, 2 stops on the train (I live near to a station) and just a few minutes by bus after that.
If this fails I have zero clue as to next step but trying not to think about that at the moment.
I also learned current Rheumy is considering Spinal MRI but he's not convinced it will diagnose joint issues nor in his view will it help him treat my non joint problems....
*sigh*

 

[Cat-a-Tonic]

I'm glad you can get a second opinion from a new rheumy/hospital, that's a good thing for sure. As for MRI, it's an easy test to have (I had a pelvic MRI last year myself, no prep and no oral contrast, just injected contrast, so I presume a spinal MRI would be similar) - I hope your rheumy decides already and lets you have the MRI to either diagnose or rule out something.

How are you doing in the meantime? And how's your mother, is she all healed up?

 

[StarGirrrrl]

Ah MRI's, i've lost count of how many i've had, must be in double figures now. One of the easier tests as you say.

My mother is much better thank you Out of plaster and out of the support splint she had to wear for 2 weeks. They did say it would be a couple months before fully healed but she is doing well. Due to her age she had a bone density scan and that all came back normal.

I am doing ok also, after about a month straight spent sick with a bowel flare and very nasty cold, i'm getting there. Energy levels were very low (not something I say lightly) at the weekend, but certainly some improvement since. I've started taking for a month or two iron & multi vitamins because I certainly needed a boost.

Battling alot of nausea which isn't great though :-/ I've only seriously thought I would be sick once but it is very debilitating.

Bowel upset or nausea I seem to go ages without any problems then for a period of a few weeks I have nothing but!

 

[Cat-a-Tonic]

Do you take anything for the nausea? I absolutely hate nausea and I really feel for you, it's hideous. I take Zofran which both my GI and GP have written me prescriptions for - it's fantastic stuff and usually blitzes (or at the very least takes the edge off of) my nausea within 20 minutes or so of taking it. I've also tried ginger with some success - I like ginger tea for nausea, and you can also get it in other forms like capsules, pickled ginger, ginger gum or candy, etc. So I would say if you can't get ahold of Zofran from your doctors, give ginger a try. It's got a strong-ish flavor, kind of like spicy soap, but it works pretty well. Peppermint can work for nausea too but for me ginger works better - also, if you have GERD or acid reflux, peppermint is contraindicated.

And I can relate to what you said about the tummy troubles, I was similar for about a year. I'd go a week or so feeling okay, then I'd have a few days or a week of feeling terrible, bloody stools, nausea, etc. Then go back to feeling okay again. My GI finally put me back on Entocort, so things are finally settling down for real now. I hope you can figure out something to get things to settle down without continually bubbling up periodically like that. It's like, just when it gets to the point that you think your guts are okay, that's when they start going again! It's miserable and I hope you can get it figured out and get some relief from it.

 

[mhmommy]

and starr how old are you if you don't mind my asking
I think it matters for pet/ct

 

[Cat-a-Tonic]

Mhmommy, I think you posted your other question about PET/CT scans to Star in the Undiagnosed Club thread (I responded to you there). I believe Star is in her mid 20s.