Mixed feelings about recent Manchester Royal appointment

[Tillyray]

Hi.I have finally had my appointment at the Manchester Royal with one of the female consultants,and I am left with very mixed feelings. Some of hope,'desperate hope',and some of the usual disappointment that I have experienced over the years at other hospital consultant appointments.

It started very well, where the consultant actually had time to read my GP letter and was pleased to receive the bits of information I had collected from previous other specialist appointments. She asked particular questions and proceeded to make notes, although she didn't want me to expand on it and discuss other symptoms(and especially not while she typed, so I respectfully sat waiting) but it all seemed very promising.

 In hindsight, I wish I had answered the crucial question differently; "if you could pick two symptoms as being the worst,which would they be?" I said "fatigue and pain".She asked "where",I explained about my feet, but I wish I had said, it depends on the day.But because of late, the feet pain and sensations I feel has been a constant, so my focus has been on that area. After typing,she asked to examine me (I was by now seriously flagging) she saw my left foot is barely able to flex or point and acknowledged it was weaker. She also asked to look at how I stand and saw the rashes on my legs, which at that moment was the red dots that fade and reappear on my calves, and she remarked it wasn't significant enough (a phrase mentioned  throughout when I described or pointed out a symptom) and that it looked like 'a shaving rash'.As I'd previously shown I'd lost my leg hair (apparently an insignificant sign), she should have twigged that shaving them is not necessary.When I returned from the examination bed and sat back down, (I can't now remember all now,I was seriously fatigued mentally aswel as physically with almost an hour's consultation) she began to summarise and said all of my symptoms could be related to my fibro condition (I was feeling the familiar hopelessness) She suggested various pain clinic and physiotherapy, saying it may or may not all be to do with fibro, but she was mostly seeming to suggest she thought it was,and that as my pain was constant (meaning the feet/ankle pain I'd spoke of) it didn't suggest anything vascular as that would be leg pain which eases with rest. I found the energy to say my leg pain was like that, at which point she displayed some anger when telling me I'd told her my pain was there all the time. So I had to find the reserve of energy to tell her when I stand or walk I have 'lead legs' and pain,and I hope I got it across well enough, because that has been a debilitating condition of mine for many years and no one has understood or cared to understand why.I had earlier given her a list of my symptoms with the heavy,lead-leg pain being on it.

 She studied me for a moment (it felt a little like a Mexican stand off) and then my hope returned when she thought about what tests to do and arranged them for me with a follow up clinic appointment. I wanted to know what medication I could have to help me at this time, but she couldn't come up with anything other than to increase what I'm already on.

I've had numerous bloods and await an EVP test. I quickly received another clinic appointment.. for six months time!

So I am left with mixed feelings about the whole event. Nothing has changed. I am still in constant agony, everyday is a challenge and I am unable to lead any sort of normal life.I tried not to have high expectations for the appointment, but I had hoped I would get some kind of help a little more immediately once my deteriorating state was seen by a Professional. Ahh well on it goes..

Best wishes x

[Hidden]

Hi Tillyray, 

I am sorry that your appt wasn't all that you hoped it to be but to be given an hour of any Consultants time is great and is seems like she was very thorough. 

She obviously didn't write off your symptoms as she is doing further blood tests etc. The problem with further treatment before they are sure of a diagnosis is that it can mask symptoms and tests also

immunosuppressive treatments ( prednisolone, DMARDS etc ) are not without risks and different illnesses respond to different drugs. I hope that the blood tests provide some answers in which case I am sure that you will be seen before 6 months. 

Please don't give up hope and hang in there, I think fibro really complicates things and makes a diagnosis much more difficult to achieve. 

[Tillyray in reply to Hidden]

Hi Keyes.Thank you so much for replying.I did appreciate the time I was given at my appointment, it is the first time in all these years of seeing consultants that I have been given any longer than 20 minutes if lucky.I understand that treatment can't be given without knowing the diagnosis,it has been the story of my life!

I feel more positive about it now, as like you say, I haven't been written off and tests are being done.Thank you again for the support.

Best wishes x

[Katie18]

hi Tillyray I think it's really disappointing and unacceptable that you were left feeling like that after seeing your consultant. It is really important that you can have a good relationship with them. I see Dr Bruce once a year at Manchester who specialises in Vasculitis and he is both thorough and has a lovely manner. I come under my rheumatologist at Airedale who was rather abrupt initially but the relationship has got better. if I were you I would see if your relationship improves but if not swap as you need to be able to feel comfortable and talk to them

[Tillyray in reply to Katie18]

Hi Katie.Thanks so much for your reply. I hear Prof Bruce is very good so I am glad you see him. John from vasculitis UK very kindly gave me information and recommended Prof Bruce at Manchester, and my GP did address the referral to him. But when my appointment letter arrived it wasn't to see Prof Bruce,so I rang the Rheumatology dept' to ask about this,and it turns out he only has an early morning clinic which I could have had an appointment for,but I would have had to wait longer for the appointment with Prof Bruce, with no guarantee I would see him and not another member of his team.With not living in Manchester and having a distance to travel,I asked John for advice and he suggested me taking the earlier dated appointment with the consultant I saw( who is very qualified) and this did feel like the right thing to do.

I think I feel so let down from all my other experiences with the many poor consultants,that I had such high hopes this time and I am now so desperate to get the help. 

Looking at it now I am feeling more positive.The experience was better than my other consultant appointments elsewhere (aside from Dr Chiu at Liverpool who specialises in fibromyalgia, he is very good) and she did take time, so hopefully with the blood results and all the info I will get somewhere with it.

Thank you for the support.Best wishes x

[Katie18 in reply to Tillyray]

Hi Tillyray I'm glad you feel more positive about your appointment. Most of mine have been disappointing too - you get yourself all psyched up! Don't be afraid to insist in seeing the consultant you want. I always do - but have to wait longrr. Dr Bruce normally has a clinic up to lunchtime - he does cancel me a lot though as he is in great demand. Best of luck

[Tillyray in reply to Katie18]

Thanks Katie. I'll see what happens when I get all the test results and what is suggested from then..Hope it all goes well for you.x

[jinasc]

What sort of Consultant did you see?

[Tillyray in reply to jinasc]

Hi,I saw a rheumatologist.

[jinasc in reply to Tillyray]

I see from your last paragraph in your response to Katy that you feel more positive. And other responses that you have been advised and given a name for a Vascultitis Consultant, which is exactly what I would have advised.

I hope you keep feeling more positive and it all works out fine.

[Tillyray in reply to jinasc]

Thanks Sambucca.I have to look at the positives and keep going -as we all do- and I live with the hope that there will be light at the end of this very long tunnel.

Best wishes x

[Monique1649]

I am so very sorry.  This journey can feel like a Ferris wheel that never stops.  Keep your hope.

[Tillyray in reply to Monique1649]

Hi Monique.Thanks so much for your support.

It is an awful thing to live with day in day out, made all the more difficult when you find yourself going round and round with various specialists who can come to no conclusions so are unable to offer any help,and because of it you end up feeling left and abandoned..but I always have hope. Best wishes x

[Jools52]

I can relate totally to your post. I was going to my GP so often and he was just not taking me seriously at all. I have had ongoing battles with depression for many years so my then GP would always put these crazy symptoms down to this. I was in a bad way. It ended up with me being blue lighted Into hospital in May 07. I was very close to dying. I was then diagnosed with ulcerative colitis and stuck on prednisolone and azathioprine but side effects were bad and so I went through most of the steroid sparing drugs. 

I was still having odd visual disturbances, random sweats ( on cold days) loss of leg hair, headache, coughing of blood and balance problems. I had difficulty judging distance and wobbled at times. We know our body better than any doctor and I knew there was something more although no one would do anything. I was ANCA positive but that was put down to the colitis. 

Some 8 years later, my GP saw me wobble and also the blood from me coughing and he then decided to investigate further. I now am down as having ANCA positive generalised small cell vasculitis and am having ongoing tests and am awaiting a cold biopsy of my lungs. The inflammation in not always there and so it makes it more difficult to get a proper biopsy, so I am told. 

Fatigue is just crazy, I can't get out if bed on many occasions and I get such severe bone pain. I have been told that I was "lucky" in that the meds for UC probably saved my organs from more severe damage. I don't feel lucky to be honest. I do feel vindicated that I was not suffering from anxiety though. It's so very hard to be taken seriously when you have any mental health history 

I wish you good luck, I say that to myself too. I totally understand your post and your being tired and hopeless. You are not alone and the Facebook page vasculitis uk support group, is a superb place and where I can vent and ask questions. I hope you are a part of it as it has saved me from many wasted journeys to my GP

I am in hospital today, having a skin test for TB I believe. They will prick the skin today and I go back on Friday, to see if it reacted in any way. It's been non stop. Thoracic, respiratory, brain, eye and spine specialists. I am awaiting referral to one of the vasculitis clinics in the country. I just woukd really love to be seen by one true specialist vasculitis clinic over seeing so many different specialists. I am just not up to going to so many appointments right now. 

Good luck and God speed 

[Tillyray in reply to Jools52]

Hi Jools. My heart goes out to you, you have had a terrible journey,but you have somehow found the strength to keep going which is what we must all do. I really believe we will all get the answers,help,treatment in the end. I sincerely hope and pray that you will soon get the care you deserve x

 I can relate to how you have, and are feeling. I think to feel so desperately unwell is dreadful, but then to add on top of that not getting the help and treatment you need is beyond words. 

It is truly upsetting to be fobbed off or even to be past on to the next 'professional' who looks at the  body part they specialise in and for it to be not quite significant enough for them; 'inconclusive'. So, you are left again, still ill and feeling more hopeless than before( no wonder depression comes into play).

I truly hope that it improves for you. Thank you for sharing your story. I wish you the very best.Let me know how you get on. X

[Jools52]

Thank you very much TillyRay, I have just come back from the hospital and they took a massive amount of bloods. They tell me they are doing a work up for rate diseases and cholangitis plus I habe had a Mantrlux skin test that screens for TB. I saw the letters that have been going to and fro and they are looking at this as a final work up before they start cyclophosphamide or Rituximab. I can only look at this as a big positive and hope that I can at least look at feeling better. There is a part of me that has kind of given up, if that makes any sense ?, I don't even care about longevity but I do care about the quality. 

I am so sorry as it seems I am hijacking this thread and I apologise for that. It's a lot to deal with and then to try and be stoic about things. I've had my crying & small breakdown and it's time to try and salvage what I can now. 

Good luck to ALL who suffer, whether it be vasculitis or other. Having a chronic condition is a very difficult thing to deal with. 

I really appreciate your reply and apologise for hijacking the thread. 

[Tillyray in reply to Jools52]

Dear Jools, I am glad you replied and shared your story. It is so much for you to have to deal with and I understand how you are feeling completely,I can relate to all the roller coaster of emotions. But I do believe that from what you say,it seems like you will finally get the treatment that hopefully will make a difference for you, so you have every reason to feel positive.

 I agree it's not about longevity anymore, after so long of continual suffering, all we want is to be able to have some kind of quality of life in the present day. 

I feel positive with you, because it really sounds like you're getting somewhere so hang on in there. Sincere best wishes x

[Jools52 in reply to Tillyray]

Thank you TillyRay,

I have some good days in amongst the rotten ones but I've learned to really make the most of those good days. It's been very vivid, that word doesn't seem right but it is and because these diseases, although rare, are so very real and affect us in our entirety. They make us suffer physically but also we have the continuing mental side and anxiety, each time we have blood tests and await the results. I have had periods where I have actually felt reasonably ok but the bloods have come back showing active disease. 

What I fear most is losing my eyesight and hearing & I know that both have been affected. I know that lying is not an option as driving would be irresponsible if I get to that stage. I have found that I reluctantly got my affairs in order and, at 52, I had hoped this would be done at a later stage. I just want to make sure that if the worst were to happen, my 4 cats and partner will not have to go through all the difficult stuff that I had to, when my brothers and parents died. It makes me sound morose and negative but it's actually me being responsible for my own life and taking control. I feel better now that I have got my affairs in order although when I had my consultant ask me if I had done this, I actually got quite cross. 

To cut a long story short, I saw 2 immediate family go through very prolonged and awful deaths and I wanted to make it clear that I don't want that to be the case with me. Of course, I am not ready to quit just yet but I feel better just for getting my house in order. 

It's still very much a taboo topic here in the UK. My parents were both Polish and they treat death so much differently. I have actually sorted out so much since this started and have dealt with everything that needed doing. I now feel that I can totally concentrate on fighting this disease and giving it my complete  attention. 

I have to say that the Vasculitis UK Facebook page has been such a blessing. I would be sending emails to my GP but not getting anything in the replies, that was of any use. When I post a question on the VUK page I often get people reply who have experienced the same crazy symptoms and I have really benefitted from that. The MRs ( she who must be obeyed) has also helped me a lot and I know that I can be difficult to deal with at times. It's the daft things such as having bald patches on my legs and other very bizarre symptoms, that I can ask and without feeling silly. I would not have even asked for a second opinion if not for the VUK page and so it has been a real godsend for me. 

I used to feel sorry for myself but I now have a very different mindset and I feel more up to fighting back. I have really cut back on the circle of friends I had and am careful with who I allow into my life as it only takes one negative person to make me feel bad about myself and that is a vicious cycle. I don't beat up on myself if I am just unable to get out of bed on the worst days, I just think that I will have other days to do these thing. This disease has really focused me on what is truly important to me and in addressing the most important things first. 

I think we have to feed our souls in the same way that we feed our bodies. I am learning to meditate and to push away intrusive thoughts. It's not easy but I am getting there. 

Thank you for your kind and validating comments. We need to help one another while we fight these diseases and I find that if I can help others, that I tend to largely forget about my own struggles. 

Please do update me on how you get on and I will do the same. I had a letter just come through the door and it explained how the specialist in Addenbrookes sees my notes and tests, to date. I really do feel like I am being looked after at long last. It may have taken a long time but I now really do feel that I am being properly treated and also kept informed and that is a big deal, especially when it felt like I was not being taken seriously and that I was being left to rot. I cannot speak highly enough on how this has turned around. I think it started to change when I started to use the helpline and now know which questions to ask. 

Take care and thanks again 

[Tillyray in reply to Jools52]

Hi jools.It is very reassuring and encouraging to read of how you have learned to deal with your illness and accept what you are abe to do.I admire your strength in getting through it and coming out the other side,which you are doing because you are still here and going forward! I know it is a continual journey, but that is what life is anyway, good and bad.

 I too have found meditation helpful and also various self-help books where I have applied the most workable bits, and most definitely allowing only the most positive of people in my life is a winning solution.I found I didn't have the energy, patience or time to waste feeling negative and upset.

 I think organising all your affairs is a good, positive thing to do. I myself realised the necessity of doing this some months ago, but I haven't yet completed the task and it is definitely on my 'to do list'!

I'm so glad that After such a long battle it seems you are finally getting the care you need.

I hope you enjoy some good moments in the days.

 I wish you all the very best with everything.xx

[Jools52]

Sorry for the typos. It is called a MANTOUX skin test.