After 21 months i am still waiting to see a Rheumatologist in Wales (UK)

[justy]

Just need a little rant really - this severe relapse of my health has now lasted 6 years - in that time I have been more or less housebound to varying degrees and hovering at about 30% on the Bell scale.

I can no longer work, I live daily with severe disabling symptoms, I have constant and repeated chest and lung infections and stomach 'bugs'. I have small joint pain, neurological symptoms (memory loss, confusion, word retrieval and now most worryingly of all some kind of weird body jerking issue, much like myoclonus that goes on and off all day every day) I have skin hyperpigmentation issues ,a malar type rash on my face, sun sensitivity, swollen lymph nodes and constant problems with my breathing, I have eye problems, mouth and nasal ulcers, to name just a few of my symptoms.

I now can pretty much only go out if using a wheelchair.

I have never had a diagnosis of M.E from the NHS, rather by default through testing with Dr Myhill, which lets face it is not specific and really only tells me I am ill. More recently I have had through private testing a low positive ANA titre (speckled) and positive for Chlamydia Pneumoniae and Bartonella, both considered in my case chronic, rather than recent active infections.

My GP has so far sent me to an endocrinologist, and I am still under a lung specialist,(predating this relapse 6 years ago) but he has very specific views about patient like me and isn't very helpful. The endo said he couldn't find an endocrinological cause after an ACTH stim test and a brain CT showed nothing.

I am more and more convinced that I could be misdiagnosed, but now I have the M.E label on my noted it is nigh on impossible to get any help. I have been offered no support or help whatsoever from my surgery, not even a painkiller. I self referred for the wheelchair.

After 6 years of horrific ill health and suffering I am no further forwards in my aim to find a diagnosis and the process is unbelievably slow. I am sure that a good Rheumy could help me - we have clues in my family we have three generations of women with health probelsm. My eldest daughter, who has been ill is very hypermobile - my youngest son is somewhat. I have always been abl;e to touch my hands to the floor.

Now a low ANA titre - it will be dismissed as not being positive enough, but I am so ill - surely that counts for something!! - oh also chronically anaemic.

I have many symptoms in common with people with Lupus, MS and Sjorgrens, yet I have still never seen a rheumy, or despite the neuro issues a neurologist.

I am considering a private apt with a local rheumy - but will it be worthwile. I am so worried that I will have waited all this time - not just the 21 months, but the 6 years, and all the years of ill health before that before I am even sent to see one, and that they will just dismiss me.

I was triaged recently by a physio, or occupational type therapist - not sure which one and she said - oh sounds like you have cfs. REALLY!!

Isnt it strange then that if I go on a Lupus site I have all the exact same problems as they do. I had to convince this woman that I still NEEDED to see the Rheumy, she was going to say I didn't need to! I had to say, listen I have lung involvement, I am chronically anaemic - don't you think that's not right for a CFS diagnosis.

In the end she relented, but clearly I am not seen as a urgent - despite the fact that I can no longer work, that I have no friends or social life left, that my 4 children have been suffering watching me struggle, that I often think of suicide, because how can it be possible for this to never end?

Is this normal for people to wait so long? Is it worth finding a private rheumatologist to see as a one off?

It is such a struggle just getting to the GP - my husband has to take me as their is no one else to do it and he also has to work, take care of me, the house and the children.

Sorry for the rant, just don't know how to even approach all this anymore.

 

[Martial]

Just focus on right now and don't let the past get involved with it, will make you feel much less overwhelmed and stressed out about things. People can go decades with wrong diagnosis or very severe tragedies/disaster situations, etc... RIght now you just need to take the proper steps to see a few people that can better assist your specific symptoms. Sometimes it can take a bit of time to get into appointments and set everything up but you are already taking those steps. They don't need to be large, every step counts right?

 

[snowathlete]

Justy, you poor thing, I'm sorry you're going through this - not just being ill, but the struggle to get to the bottom of it. I don't blame you for feeling the way you do, what a crazy wait.
I don't know enough about Lupus to comment really, but to me it seems that you really have something else going on, either you have ME and something else too, or you have something else altogether.

It's well worth pursusing even though it is harder with the me/cfs label. You might get to the bottom of it and find treatment options become available as a result. Even if not treatment options you might at least get a feeling of understanding what it is you do have once you've found out.
I've been waiting 18 weeks to see a neurologist because I think I have something as well as ME, and I see them this coming week, and that has seemed like a long time to me, but nothing compared to what you've waited - makes me feel silly for thinking it was a long time now.

In England you have a right to see someone within 20/22 weeks, something like that? Is it the same in Wales? If it is then i dont know what happens if it goes beyond that, but might be worth looking into? Just do the best you can, don't give yourself a hard time in any way, you're doing great because being this ill is really hard and other people wouldn't manage as well as you have. I dont think i would have coped as well as you. Look into what your rights are, write to the doctor rather than go see them if it is easier for you, and soon i hope it'll move along and you and your family will get the break you deserve.

 

[Gingergrrl]

@justy

Just need a little rant really - this severe relapse of my health has now lasted 6 years - in that time I have been more or less housebound to varying degrees and hovering at about 30% on the Bell scale.

Rant away, we are here to listen, and I really mean that.

I have never had a diagnosis of M.E from the NHS, rather by default through testing with Dr Myhill, which lets face it is not specific and really only tells me I am ill. More recently I have had through private testing a low positive ANA titre (speckled) and positive for Chlamydia Pneumoniae and Bartonella, both considered in my case chronic, rather than recent active infections.

From everything I have learned on PR, it doesn't sound like a diagnosis of ME from the NHS would even mean anything as they are using all types of psychiatric scales as measurements. KDM's tests are more thorough and accurate and you know how ill you are (regardless what the NHS may think.)

I have many symptoms in common with people with Lupus, MS and Sjorgrens, yet I have still never seen a rheumy, or despite the neuro issues a neurologist.

I am so sorry and it is horrific that you have been denied access to see a rheumy or neurologist. It sounds like you have many symptoms that could be a separate illness in addition to ME and I wish to God there was a way for you to get the proper assessments and testing.

I am considering a private apt with a local rheumy - but will it be worthwile. I am so worried that I will have waited all this time - not just the 21 months, but the 6 years, and all the years of ill health before that before I am even sent to see one, and that they will just dismiss me.

I think you should see the private rheumy if it is an option. Does this mean going outside the NHS so you have more availability to receive tests?

Isnt it strange then that if I go on a Lupus site I have all the exact same problems as they do. I had to convince this woman that I still NEEDED to see the Rheumy, she was going to say I didn't need to! I had to say, listen I have lung involvement, I am chronically anaemic - don't you think that's not right for a CFS diagnosis.

It sounds like you have other things going on in addition to CFS and do not give up on your quest to get to the bottom of it. Hopefully when you get back to KDM and Belgium, you will start to feel stronger on treatment, and have more energy to advocate within the horrible health system you are stuck in right now.

In the end she relented, but clearly I am not seen as a urgent - despite the fact that I can no longer work, that I have no friends or social life left, that my 4 children have been suffering watching me struggle, that I often think of suicide, because how can it be possible for this to never end?

I can relate to feeling suicidal when it feels like there is no end and unable to participate with my family. But I promise you, that your four children love you, want you here, and need you very much. Your daughter set up that beautiful fundraising page for you and you are on the verge of starting some real treatment (even though I know it involves agonizing travel to get there.)

Is this normal for people to wait so long? Is it worth finding a private rheumatologist to see as a one off

It is not normal (meaning it is not okay in a modern society IMO) but it sounds like it is usual and customary in the NHS system. If you can see the private doctor, IMO, I think you should do it 100%.

It is such a struggle just getting to the GP - my husband has to take me as their is no one else to do it and he also has to work, take care of me, the house and the children.

My husband has to take me to my appts now too and the guilt that I feel is often beyond words. But it sounds like your husband is doing this out of love and wants to see you better. I wish I knew how to cope with the guilt.

Do not give up, Justy, you are worth fighting for.

 

[Jonathan Edwards]

Dear Justy,
It does sound as if you should get a rheumatological opinion. It may be worth getting a private opinion from an experienced consultant. There are a variety of ANA-linked illnesses that could fit with your description and an experienced rheumatologist should be able to identify those at a clinical assessment. A consultation ought to cost about £200. I am wondering where you are near to in terms of hospitals. I know many of the UK rheumatologists over 50 but not so many of the younger ones. One specific question that might be useful to know the answer to is what your cuticles are like.

 

[justy]

Dear Justy,
It does sound as if you should get a rheumatological opinion. It may be worth getting a private opinion from an experienced consultant. There are a variety of ANA-linked illnesses that could fit with your description and an experienced rheumatologist should be able to identify those at a clinical assessment. A consultation ought to cost about £200. I am wondering where you are near to in terms of hospitals. I know many of the UK rheumatologists over 50 but not so many of the younger ones. One specific question that might be useful to know the answer to is what your cuticles are like.

I live in south west wales - travelling to Swansea or Cardiff, or even Bristol if I had to is not out of the question for an appointment if necessary.

My cuticles? To be honest I've always felt that I don't really have any - they don't seem to grow up onto my nail, but I guess the area where the nail joins the hand is always a little red looking - at times over the years they have looked a bit inflamed and have sometimes had little sore catches on them.

 

[JoanDublin]

@justy To be honest it certainly sounds like you have a number of markers for an autoimmune disease, possibly Lupus. I have SLE so know a bit about it. Do you have ridges or pitting on your fingernails? It can be an indication of an autoimmune disease like Lupus - but its not always there. My nails dont have ridges for example but my mothers did and I'm fairly convinced she had an undiagnosed autoimmune problem for many years. Any good Rheumatologist should check your nails during an examination.

Having a low positive ANA doesnt mean you don't have Lupus - from memory I believe about 3% of people with Lupus never test positive for ANA. While that sounds low, never forget that the people who are in this bracket DO HAVE LUPUS so you could very well be one of them. As well as that many people who initially present as seronegative, go on to develop positive bloods over time so at the very least that test should be repeated if symptoms continue.

Do you know what the ANA titre result was? Mine was also speckled pattern which is often found in Lupus. Unfortunately a lot of doctors don't go any further than this initial test if it doesn't show a positive or high positive result but the most clued in ones will continue to search if someone like you presented with that number of clinical symptoms. I get the mouth ulcers regularly. I have lung problems from Lupus. The malar rash, sun sensitivity and swollen lymph nodes are all very classic symptoms of Lupus too as you know along with fatigue, joint pains, etc.

Lupus can affect every system in your body and having Central Nervous System involvement could easily make one present with the neurological problems you describe.

If you have the wherewithal to go privately to a Rheumatologist I would definitely recommend it at this stage. You should have an Extractable Nuclear Antigen panel done which may show other more specific antibodies. Also you should be tested for other auto antibodies like Anti double stranded DNA for example. You should also have your complement levels checked and other tests like C reactive protein, ESR, etc. There are others that I can link for you, but the point is you really should have this testing done at this stage of your illness. Its grossly neglectful to leave you this way.

I'm really horrified at the way you have been left to fend for yourself Justy and I would strongly suggest that, when you catch your breath, you forge ahead and focus on the day when you can look those doctors in the eye and say 'I told you so'. Look your GP in the eye and tell him/her that you don't want to waste any more years of your precious life hanging around in limbo and you are prepared to go as far as possible to get to the bottom of your health problems. Ask him/her if they are with you or against you in this journey. I suspect it would be a brave doctor who would say they were 'against' you.

 

[AndyPandy]

@justy there is so much of your story that I can relate to. My heart goes out to you.

If I were in your shoes I would pay to see a private Rheumatologist. Although it may be tempting and more convenient to go to the local Rheumatologist, is the local one the best one for you? Like all specialists it is important to find a good one, even if it involves some travel for you.

I agree with @Jonathon Edwards that you should find an experienced consultant Rheumatologist. I have thrown money away on inexperienced ones.

I understand the difficulties of travel and attending appointments as I am back to around 15% function myself and need to be pushed in a wheelchair by my husband.

I also understand the pain of the loss of the ability to work (for me, a career as a lawyer) and the loss of friends and the ability to socialise. I too have lost my independence and have to rely on my husband as cook, caregiver, driver etc. I am lucky to have his support.

I too have questioned the point of living such a diminished and painful life with no apparent end to the suffering.

For now, I am choosing to focus on trying to unravel my many health issues one step at a time.

I am pursuing further testing since my ANA titres speckled pattern have doubled in 2 years and I have some lupus type symptoms.

Sending you love and encouragement.

Best wishes

Andy

 

[barbc56]

@justy

I don't have any medical advice but am so sorry what you are going through. How frustrating.

Rant away. We all need to do this at one time or another. It can be a healthy outlet.

What's great about PR is that we are all here for each other so we can rant away at one time and be supportive another. It evens out.

The bottom line is that we are here for each other.

Take care.
Barb

ETA I have such a hard time wrapping my head around the UK's medical system. Yet ours is not the answer, either, that is if there's even an answer out there. Sigh.

 

[Gingergrrl]

@justy If you have the wherewithal to go privately to a Rheumatologist I would definitely recommend it at this stage... There are others that I can link for you, but the point is you really should have this testing done at this stage of your illness. Its grossly neglectful to leave you this way.

I'm really horrified at the way you have been left to fend for yourself Justy and I would strongly suggest that, when you catch your breath, you forge ahead and focus on the day when you can look those doctors in the eye and say 'I told you so'. Look your GP in the eye and tell him/her that you don't want to waste any more years of your precious life hanging around in limbo and you are prepared to go as far as possible to get to the bottom of your health problems. Ask him/her if they are with you or against you in this journey. I suspect it would be a brave doctor who would say they were 'against' you.

@JoanDublin Wow, excellent post and I want you as my advocate!!! Everything you said was very powerful and gave me chills.

I have a very close friend with Lupus and she has suffered greatly and it has affected every system of her body as you said even requiring hospitalizations and surgeries. But because she's had access to excellent doctors she is now in a remission type state and is very active and working full time.

Your words, which I re-quote below, are so empowering and motivating that I want to say them to some of my former doctors one day! Your son is lucky to have you advocating for him.

"focus on the day when you can look those doctors in the eye and say 'I told you so'. Look your GP in the eye and tell him/her that you don't want to waste any more years of your precious life hanging around in limbo and you are prepared to go as far as possible to get to the bottom of your health problems. Ask him/her if they are with you or against you in this journey."

 

[JoanDublin]

@Gingergrrl Thanks for the vote of confidence It just makes me so angry to see the amount of people who are left lying (and dying) by the wayside because some doctors either can't be arsed to do their job of looking after their patients properly or else they are making unfair and incorrect judgements about how ill they 'really' are. I seriously cannot think of any other reasons besides those two.

It's so very easy to take on oppression, especially when it's been doled out to patients for years and years on end. We either end up subconsciously believing they must be right or become too damn exhausted to fight them. How awful is that?

A 'funny' story the other day really brought it home to me how much we acquiesce or internalise what these doctors are saying to us. I was completing a very lengthy questionnaire with my young lad before an appointment to see a Nutritional Therapist. There was a huge list of symptoms which you were asked to check if you experienced them. One of them was 'apathy'. Quick as a flash, my young lad says 'I'm a fairly chilled out guy and I don't really care about a lot of things but whatever you do, don't tick that or else I might find myself on a psych list somewhere as being a potential psychopath or the next Ted Bundy'. Now at the time we both laughed but later I thought 'how crap is that, that a 14 yr old can already have that level of experience of abuse by medical professionals who would either ignore, deny or misinterpret his symptoms'. So it's back into the battle for me...

 

[barbc56]

@JoanDublin

Pat yourself on the back, mom. You are raising a wonderful son! Yeah, it's sad that he realizes this but the other side of this is his insight should take him far in life.

Barb

 

[Jonathan Edwards]

Dear Justy,
I would suggest trying to get to see Dr Julian Nash in Cardiff. He has the right expertise.

 

[justy]

Thank you everyone for your very kind words and support - it means so much to me, although has raised a slight tear.

Thank you to Jonathon Edwards for dropping in and making a suggestion for a rheumy - I had looked at Dr Nash as being possible, so I will look into this.

 

[daisybell]

Good luck and I hope that you get some answers and improvements.

 

[NK17]

Dear @justy you have my understanding and support, what can I add to everything that has already been said on this thread?
Go see Dr. Nash and get at the bottom of your health problems, do it for you, do ut for your kids, for your husband and for all of us here on PR and the many left behind and the ones to come.
Even if no classic autoimmune pathology will be found, and that's a big if, you'll regain a sense of being the master of your body.
Trust me I've been through all of this myself and while I've been lucky to have access to some good caring specialists, every time a diagnosis was for the time being ruled out, my heart sank but my spirit soared.
I'd like to remind you that if no proper and clear cut autoimmune disease is found, you still need to be followed closely by a top notch clinician.
We start to see that some PWME have a hybrid clinical picture between Sjogren and Lupus.
I myself have all the clinical symptoms of Sicca Syndrome (dry eyes, mouth etc.), but no specific positive blood test, for Sjogren, Lupus or Scleroderma, still my rheumatologist keeps me rightly under surveillance.
I really feel for you and all the british patients who have to fight or just resign, the NHS has been in disarray and in a state of disservice for quite sometime now.
Please try to get good care of yourself, you deserve it as much as any other ill person in the world.

 

[WillowJ]

hugs @justy

I'm glad you have somewhere to go to potentially get some help.

Also, can't they send you to pulmonolgy for your breathing?

take care

 

[rosie26]

Thinking of you Justy. Lots of hugs.

 

[justy]

hugs @justy

I'm glad you have somewhere to go to potentially get some help.

Also, can't they send you to pulmonolgy for your breathing?

take care

I have been under a pulmonologist for the past 6 years - the consultant has not been very helpful, and may have been negligent in my case - I had an awful appointment with him last year where he decided to diagnose me with 'CFS' AND THEN SPENT OVER AN HOUR LECTURING ME ON IT ( NOT SHOUTING, SORRY CAPS LOCK, but it would have been a good place to shout!)

He believes I am not having lung infections (fibrosis on CT scan though???) and that the green gunk, lack of breathin, wheezing is all in my mind and that the antbx I take that help this are working as a 'placebo'?

I have a thread on it here:

http://forums.phoenixrising.me/inde...after-hospital-appointment.22437/#post-342318

Of course I now have a positive IgG for Cpn from KDM so at least I have proof that I HAVE had Pneumonia at least once in my life (been dx with it three times since age 10)

Anyways I have an appointment next week with the respiratory nurse - but only because I pushed for it. The consultant doesn't want to see me.

 

[justy]

Sorry not to be able to reply individually to people on this thread. But just to say that some of the posts on here have said some very excellent and inspiring things, and I VERY much appreciate it and hope that those words will help others here too.

I am going to make an appointment to see Dr Nash (Rheumatologist) in Cardiff privately. I have an apt with respiratory nurse next Monday at my local hospital and start oral antibiotics from KDM this week to tackle the Bart and Cpn - then I go for my first IVIG in Brussels in November (I wish that I didn't have to go that far for it - but there is no other option right now...) I have just been ill with extra things on top of the normal health problems since June with no let up, so am hoping the IVIG will help my immune system to stay stronger!