New Year new plan

New Year new plan

Haven't been on much, I got in two days back at work and then came down with bronchitis and then a raging ear infection which has floored me. Almost recovered, but I can't hear! hahahah

Anyway while I was off I called the rheumy private rooms and to my utter amazement got an appt for the next morning. So to cut a long story short, he has reviewed everything and is still doing so. He is sending me for MRI on my foot and neck, as I have degenerative discs which could be causing the claw hands all night long. He is talking to the pain clinic doc as he is considering palexia (I think that was it) and any experiences with this drug from chemical sensitive people would be appreciated. He also told me he is looking at abatacept? not sure if he will wait until I need it or put me on it anyway. He also told me that I have hyperparathyroidism that will probably require an op to remove. We had a long chat about registrars not listening to their patients and I told him that she had sent a letter to my GP who disagreed with her diagnosis too. He said he has instructed her to send out another one saying yes I have RA and possible myofascial pain. We talked about having a trusting and equal relationship and that sometimes we would have to agree to disagree. I have to go back to hospital clinic aghhhhh not happy about that, but I know I have the option of calling him and making an appt privately. So now I wait. Please if you feel something isn't right, pursue it. I was so distraught by everything and somehow managed to keep it together to talk rationally to him on the phone before Christmas and made some pretty serious points to him. I thank those who gave me support and faith in human kind. Don't chase your tail around in circles, be like a terrier and just keep nipping at their heels,

17 Replies

  • You're right SOM,,,,,I regularly give myself a good talking to &'contact my rheumy & things are hardly ever as bad as I think they are...especially at three in the morning.

  • Hahaha I watch tv or facebook at that hour, stops my mind thinking!

  • Love the photo and great to hear you back being positive!! Xx

  • Thanks Allanah. I was expecting to be told it would take 6 months to get in and she said I have an appt at 8am tomorrow. Yep thank you. I felt like death and had so much trouble hearing but I was going hell or high water. hahahah Not sure what happens when I have an mri and it will probably show the same as US, but at least I have seen someone who actually knows what they are doing.

  • Good to hear you confident again, SOM despite your recent bronchitis and earache. Looking forward. I have a damm cold and it's gone to my chest. It's defo 'man flu' X

  • Not confident, but at least there is some sort of plan.

    Oh no good. Hope you feel better soon.

    Mine started as an asthma attack and blocked sinus and deteriorated rapidly after three flights. I think the air pressure caused the ear infection. Oh well hopefully I will be able to hear properly again soon.

  • It's snowing here. Have come round to my son's house. He has a garden furniture delivery must be mad. Wish I didn't hear him when he called not snowing in London where he works. What you do for your children xx

  • I'm so pleased you were able to follow up your phone conv & see your Rheumy face to face, though contracting bronchitis was a pretty extreme way of eventually seeing the boss man!! I hope you're the better end of it now?

    I guess you'll know Palexia (tapentadol) is an opioid med. As such I'm not sure any are better or safer than others in the same class but it is one of the newer ones so maybe not too much known as to longer term effects? Only thinking how you are so sensitive to meds, is it may be better to see the Pain Clinic doc personally to discuss all your options?

    MPS diagnosis seems sensible, from what you've told us here. Let's hope that's the case & your can start down that road to some relief. The trouble is, do check though, I don't think opioids help, rather trigger point injections, anti depressants (such as amitriptyline to act as muscle relaxants) & physio.

    Result as far as informing of Registrars. I hope it'll sink in & they do listen from now on, after all this is the start of a long career for them & the rot shouldn't set in before they even qualify.

    Lovely pic, is he chasing his tail?!

  • Thanks No more heels. I nearly fell off my bed when she said she had an appt the next morning! hahah I am sort of wondering why change to palexia though if tramadol is working and I have no side effects from it. I won;t take anti depressants as I cannot put on any more weight. I see the cardiologist on Monday as after having that episode where I ended up in hospital unable to breathe and full of fluid I am now permanently on lasix and aldactone and no one seems to be able to tell me why. My GP mentions congestive heart failure, then the Rheumy surprised me by saying 'oh you showed diastolic dysfunction on the last echo last year'. What? no one told me. What does that even mean. So putting on any more weight is a no with me and I so don't do any good on mind altering drugs, I just can't function at work.

    I will get to see the pain doc, just have no idea when. All they want to do is give you lyrica or one of those and I just won't take them, the side effects aren't worth it for me.

    I am not sure what trigger point injections are but I know because of the apixaban I can't have any in my spine or neck, so sad about that as they help enormously when I was able to have them for ruptured disc.

    From the way he talked I think he knows she needs a big learning curve but he is stuck with her for the next two years. The one that is really good is leaving to study in England so maybe one of you will get her in a clinic. She is really good.

    Oh well I guess the next few months will either be frustrating or helpful it can only go one of two ways. Hahahah

    Yes he is chasing his tail which is how I feel!

  • Surely if your GP says CHF that fast tracks you to a Cardiologist, or have I missed that?! I was absent beginning to mid Nov so it's possible. Both breathlessness & water retention would indicate your GP's concern & you have history so I do hope things start moving along at a swift pace soon. Diastolic dysfunction doesn't right itself, it's far more common in women than men & there's only one way it goes, to leave well alone isn't an option so I'd be following that up & soon. I don't understand why it wasn't when you had your echo.

    TPI is a steroid injection similar to what we have for joints but into muscles to alleviate the spasms & pain. MPS is when you have areas of muscle spasm within the substance of the muscle, it feels like a knot? I had physio on mine rather than TPI because mine was localised in my shoulders following a shunt when white van man went into the back of our car. Often it's limited to just the muscle but can develop further in response to other pains in the same part of the body or other places, this is when the diagnosis is MPS.

    That's a shame the good Registrar is leaving but hopefully a Rheumy dept somewhere in England will benefit from having her on their team.

  • He has been trying to get someone to see me since I was in hospital. The cardioligist I see on Monday saw me on hospital and also did the three cardiac ablations. It was the first appt I could get. I also have another one with other cardiologist I saw when I had the strokes in 2015. But that is in March. I am hoping the one on Monday will do the required testing as I don't like the other one. I have noticed the last few days since it has been pretty warm, 39.9c, that I am struggling with breath when just walking. I have never been like that. Anyway I guess I wait and see.

    I guess I won't be looking forward to needles in my feet and hands ewwww. Haha

    Well I guess our loss is your gain for 6 months anyway, and then she will go to another hospital in Sydney.

  • I hope you get the Cardiologist you want, you deserve to after needing to wait, it's one of two specialties you absolutely should be fast-tracked to. Stands to reason the better condition your heart's in the better so that means earliest treatment no? Struggling so much for breath isn't the best is it?

    Even though there'll be lidocaine in the injection the thought doesn't appeal but if it helps then it'll be worth it. Lie back & think of Australia!

  • I see them privately, the only issue is if he now does the type of cardiology I need or if he will send me to his friend who I saw when I had the strokes. He is an electrophysiologist cardiologist, think that is how you spell it hahah. He does the heart rhythm stuff, pace makers etc very well. The other one does the regular heart stuff. Anyway I guess I will know after I see him tomorrow.

    I have had steroid injections in the joints of my toes and fingers, elbow and spine, just never in muscle. Another, I will have to wait and see if that is on offer or not. They all just seem to want to shove you on lyrica over here and I won't take any of those drugs, they are evil for me and do more damage with absolutely no good side.

    The waiting is interminable. I want it all solved now! If I was rich it would be I guess.

  • Either way whoever you see I'm sure they'll do their very best, each know their field better than the other eh?

    I recently started Lyrica, I gave in to my persuasive GP. She did remind me we've tried everything other than & showed my why it's ideal for the trouble I have with my neck so I've not walked in blindly. My h isn't overly happy as he had awful reactions to it but hey it' skit him with this nerve pain in a rubbish neck! I've been having fortnightly reviews, titring up from lowest dose slowly though at my last on appointment I'd decided I wanted to stay on 75mg for a month, see if I can cope on that as it has started helping, she agreed it was best considering. I do understand why you won't go there though, I swore I never would believe me!

    Your situation shouldn't really determine the care given though should it?

  • Yes that are both the best in their fields here where I am but I do prefer the one I am seeing tomorrow. He knows the inside of my heart so well hahahahah

    I understand trying lyrica, I did and it didn't work with me but lots of people have no trouble. It is getting quite a reputation though, so please be very careful and if anything seems not right get medical help straight away. It is also very hard to come off. But you know your body and what feels right and what doesn't. I hope it does the job for you. I just can;t take anything like that, I have also had a couple of different anti convulsants and they were awful too. My brain obviously hates anything like that.

    No money shouldn't make any difference but you do get seen quicker and get more immediate attention when you have $ to spend. It is the way our government is pushing health care here, similar to what the US is like. Very very wrong.

  • I suppose as they're the best you're not going to go far wrong. Just imagine him as a Chippendale, well a medically qualified one!

    We discussed it & one reason I gave in was I start physio on my neck & shoulders tomorrow morning so the hope was to use Lyrica as a bridging med. this was another reason for small increments, with the intention it will be a manageable & hopefully not lengthy taper. I've been on amitriptyline & Butrans patches a while now but whilst they're managing their specific reason for prescribing nothing has touched my cervical spondy. We often moan about the NHS & there's no doubt things sren't good but it's preferable to the alternative, though I still say the could learn a lot from how the Spanish state healthcare system, if that's still running as it was of course!

  • If it is working for you and no bad reactions then that has to be a plus. Some people take it and have no problems at all. I wonder what that's like! Hahaha

    I hope the physio gives dome relief for you.

    We supposedly have unuversal healthcare but the current govt is dismantling it bit by bit so it will be user pays. So scary.

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