The (not so old) Crocks Cafe -Part 2

SingleSue

LameWolf wrote: »

HannahO when I realised that my memory loss/lack of concentration was getting to ridiculous levels, I got my DH to buy me a Personal Digital Assistant for my birthday. I programme in all the tasks I have to remember, and I can tell it to "squeak" at me if I want it to, to remind me to do things..... it's great.

My DH's mum also had memory problems (poor lady had some sort of cyst in her brain), and DH used to get her packs of post-it notes to use, to remind her to do things; apparently, she used different colours for different things, and had them posted up in strategic places round her house.

My middle son has extremely poor short term memory due to brain damage and he carries around a memory book (our name for it), where he will jot down bits of info from school, instructions etc, it has been an amazing help since his move to high school as the teacher will write exactly they want for homework and ways to do it in case he has forgotten the instructions from that days lesson.

Only problem is I have to remind him to remember to look in the memory book! :rotfl:

SingleSue

Ok.....received a letter this morning from the spinal service, it appears I have been referred to them to see an extended scope physiotherapist (eh?) after my recent MRI and they have given me an appointment for next week!

Not that I know what the results of the MRI were though.....but referred I have been.

formaldehyde_perfume

Ok, so, I've just rung and applied for ESA. I guess that makes me an official claimant. I know it needed to be done, but I still have all these horrible feelings going round in my head.

Also, it was only when I rang that the man pointed out that the date on my sick note was a month ahead *rolls eyes* The receptionist said I can pick another one up tomorrow evening though so it's not too much of a hick-up.

Does anyone know what happens next? A heads up would be much appreciated.

Trialia

hannahO wrote: »

Purse String,
I had a full blood test done to see if I had Lupus but apparently the results came back all normal. I've been feeling so tired that by 11am, as if I had a jet-lag, I really had to fight to stay awake. I take Ibuprophen to feel normal as I wake up with headache and it's like a hangover. I have a several bouts of flu like episodo this year but I never have fever, runny nose or cough, just headache and aches and tiredness. I don't think it's CFS though as I do not get sore throat.

The thing is I am afraid to talk about this with my gp cos she will more likely to say it's down to my anxiety. She more or less said that in a round about way by telling me that I have 'idiopathic xyz (unknown cause)' when I spoke to her about Lupus (with 19 conditions I had ranging from endometriosis op, scoliosis etc.) Any idea how to move forward from here? Surely if I had some physical conditions, it's not in my head?? When I speak to her, sure, she is sympathetic but I don't know if she is cleverly handling me so that I'll shut up. :rotfl:

Sounds like she is, to me... But don't give up.

As for diagnosis without certain symptoms - I was diagnosed with fibromyalgia without the consultant performing the tender point test on me, because I have pretty much every other symptom listed, including the ones that are minority symptoms in people with FM. He looked at my medical records, took into account everything else that's up, all the tests I've had, and that I already had severe hypermobility problems, and said that to anyone with experience, it more or less screamed FM. I still haven't had a tender point test to this day. I do, however, have peripheral and sporadic allodynia, so I suppose that qualifies anyway.

Good luck, Hannah, and go easy on the ibuprofen - stomach ulcers and rebound headaches are not something anyone would want you to have from too much of it!

hannahO_2

Trialia wrote: »

Sounds like she is, to me... But don't give up.

As for diagnosis without certain symptoms - I was diagnosed with fibromyalgia without the consultant performing the tender point test on me, because I have pretty much every other symptom listed, including the ones that are minority symptoms in people with FM. He looked at my medical records, took into account everything else that's up, all the tests I've had, and that I already had severe hypermobility problems, and said that to anyone with experience, it more or less screamed FM. I still haven't had a tender point test to this day. I do, however, have peripheral and sporadic allodynia, so I suppose that qualifies anyway.

Good luck, Hannah, and go easy on the ibuprofen - stomach ulcers and rebound headaches are not something anyone would want you to have from too much of it!

Feeling hopeless.... I think I'm going to give her one more go, if she gives me that polite.... "it's in your head" type of answer, I'm gonna have to change gp again

May be, instead of giving her all of my symptoms again and say... this time it could be FM, I might go in a round about way and ask if I could get a diagnosis for HEDS and show her my bendy legs. At least that way I may be given a chance to see rheumy. I mean she can't argue that my bendy legs are also 'in my head', could she!? mnnn mind you she might pull that 'idiopathic, nothing, yes it's bendy but it just happens and nothing more' card

I took Paracetamol for a change but it did nothing for my pain. Some of my pain moves around the body.

bigzippy

hannah don't be afraid to fight your corner-no one else is likely to do it for you, unfortunately. I have pretty much every one of your symptoms that you listed and it's taken 3.5yrs to get diagnosises of hypermobility, fibro and ME/CFS, as well as eczema, asthma, IBS. Doc generally just thinks me of as having an as yet unknown/named auto-immune disease. The nail bed thing reminded me of rhuemi looking at mine with ref to mixed connective tissue disorder iirc. I'd ask to see an immunologist/endocrinologist/ rhuemi/general physician(diff to gp). Oh, and i'm not sure what made you think you need a sore throat for CFS? You really need to protect your stomach from the ibuprofen too-something like omeprazole is most likely to be prescribed for that, and make sure you have milk with the ibu

bigzippy

i'm on my phone in bed so doing this in stages...

Jojo i'm SO pleased for you! I've a fair idea how you feel cos MIL got a letter last sunday offering her an ideal sheltered accom flat that i'd spotted about 2 months ago and was told had gone! Say it tuesday and signed up that day! She moves on saturday!

bigzippy

So, hi guys! Welcome to the newbies
I've been awol lately cos i had the laptop i'd been using (since mine died at the beginning of the yr) -which pcl (for those that remember her) lent me- die unexpectedly! Managed to borrow some money for a new laptop but finding my way back has taken time. Time which is being swallowed by MIL's impending move atm. Tis busy atm, and therefore exhausting!

I guess, seeing as i'm supposed to be up early for decorating purposes, i should attempt some sleep... :wave: to all

P.s. Lamewolf can you believe it's been a whole year now since my wedding day?! :shocked:

hannahO_2

bigzippy wrote: »

hannah don't be afraid to fight your corner-no one else is likely to do it for you, unfortunately. I have pretty much every one of your symptoms that you listed and it's taken 3.5yrs to get diagnosises of hypermobility, fibro and ME/CFS, as well as eczema, asthma, IBS. Doc generally just thinks me of as having an as yet unknown/named auto-immune disease. The nail bed thing reminded me of rhuemi looking at mine with ref to mixed connective tissue disorder iirc. I'd ask to see an immunologist/endocrinologist/ rhuemi/general physician(diff to gp). Oh, and i'm not sure what made you think you need a sore throat for CFS? You really need to protect your stomach from the ibuprofen too-something like omeprazole is most likely to be prescribed for that, and make sure you have milk with the ibu

hi bigzippy,

Thank you for your encouragement and advice about ibuprofen. I must educate myself into more about different kinds of painkillers. It's so true that no one is going to fight this for me.

I found Sore throat thing on this page.

bigzippy

hannahO wrote: »

hi bigzippy,

Thank you for your encouragement and advice about ibuprofen. I must educate myself into more about different kinds of painkillers. It's so true that no one is going to fight this for me.

I found Sore throat thing on this page.

Ah I see... I have to warn you though - literature and opinions on FM and CFS seem to change all the time - and I've been told I have both (by 2 diff docs), but also been told that they're the same thing (by another doc), and that FM is a symptom of CFS (by yet another doc)...I tell you this more because a) it's incredibly frustrating to come up against, especially if you're not expecting it b) you could be thinking one thing about whatever a doc has said, when they're actually interpreting it an entirely different way! :cool:

I would say that while there are guidelines (in text such as you found), there isn't (imo, from what I've seen/experienced) any hard and fast rules about symptomatology for either dx, and if you expect an "easy" answer, or even a one dx fits all, then I think you're going to be really disappointed...
[edit: Oh, and I know people who've been diagnosed with FM who have symptoms that list says you don't have, and the same with CFS - don't be put off, necessarily, by one seemingly unfitting symptom]

I definitely think that you should seek a second opinion though, whether that be from another GP or from a consultant - until you can be settled in your mind that you have been heard and your symptoms properly considered, you won't be able to settle, iyswim? At least, that's what I've felt like, and many others I've come across with similar things...