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Call out for ME/immunologist private specialists

smilingjane profile image

Morning everyone

I was diognesed with secondary chronic fatigue with a lifetime of sleep deprivation at the beginning of this year.

After a short consultation I came away quite tearful. the consultant said that I would slowly get better as my sleep gets sorted and it may take several years!

I had started taking Oxycodone for restless legs a year prior to that. Oxycodone interferes with sleep pattern so my sleep is only a little better than before I was prescribed it. The blessing is that I can actually lie down or sit whenever I want. A miracle and a godsend and I was do desperate, I am pretty sure it saved my life

Since that consultation I have started to get pain in my legs and often lie with my legs in the air to try and alleviate. Dosnt make much difference though a little.

The consultand asked whether I had pain at the time. I said no. I have sort of downplayed the pain since it started around 5/6 months ago (since the consultation) thinking it may be because I am not getting excercise and just padding around my flat.

However when I have the occasional blow out, ie stay out of bed and have a moment where I want to move the sofa say and have s rearrange of furniture. As I did yesterday. The pain was worse than usual, I suspect because I overdid things

Which got me thinking that perhaps I should get a second opinion, maybe I have ME.

I dont know but I am thinking that I should get a second opinion. Unfortunately I didnt get a good feeling from the NHS immunologist I saw. A couple of reasons which I wont go into here.

So, after a length post .... sorry tired folk out there 😗

My query is, does anyone know of an ME/immunology specialist in the UK, (pref up north!) who is understanding of the illness and takes time to listen?

Many thanks for reading this 😊

Jane

28 Replies

Hi Jane

I’m afraid I can’t help with northern consultants as we are in the south west but on the restless legs and fatigue front I wanted to ask if you’ve had a thyroid blood test since this started? Also depending on your age both can be a peri-menopause or menopause symptoms so HRT might help?

To be diagnosed with ME/CFS you’ll need to have a very full health screen with all the blood tests your GP can do to rule out other infections and auto-immune disorders. Has your GP done all of these before you saw the rather disappointing consultant?

Hi chocoatebrowny

Thank you for your response.

I am seeing a private endo currently.

He is regulating my thyroid meds after several years of sparodic thyroid tests, and I am quietly confident that my thyroid issues will be sorted

He also recommended me starting on pump action Estrodial and Progesterone, which I've been on around 3 months.

He also discovered a long term B12 difficiancy and I have been SI for around 2 months.

He has me on a 3 month plan of which I am almost through. In the report that he sent to my GP he recommend that if I hadn't started to recover by Sept/Oct that I should be referred again to a ME/CFS specialist for a 2nd Opinion.

That's why I have put a call out on here. I am looking for a specialist with a special interest in that area as opposed to one that covers lots else. And one that is effective at his job without negative judgment. I need to get one in place in case needed and sometimes waiting lists take more time.

I am also currently looking into Lymes disease. I have the first test, (elisa) back which is positive and now need to do the second. I have heard it's a notoriously difficult to diagnose .

So trying to tick rnmverything off the box until I see a CFS/ME specialist.

The problem with some specialists I suspect...... Is that they see me as a middle aged woman with pre existing conditions and assume that is why I am always tired.

Of course we know that just being tired would be almost a joy, Oh we could just lie down on our comfy sofa and have a rest. Easy ... job sorted.

Except of course that's not the reality.

Thank you so much for your valid points, which I am trying to cover currently.

If you think of anything else, I would be extremely greatful for your input.

Desperate times! I want the lovely Jane back

As regards ME specialists, I can travel anywhere.

😘

Oh wow, you’ve had a rough time with your health, that sounds like it has all been a lot to deal with. I’m sorry. I know what it’s like to be desperate for answers and to reclaim your former life.

I’m not sure I can offer much more practical advice other than to suggest lots of self care and being careful not to push yourself and to not overdo anything at this point whilst your body heals from everything you’ve got going on.

According to my daughters specialist (paediatric so not for you I’m afraid) , CFS/ME is caused by lots of stress on the body, it’s not one thing that causes it, but they often see it after a cascade of health problems, like you she had lots of illnesses one after another and struggled to power through, with hindsight we should have all taken a breath and taken lots of R&R to get over everything.

Take extra special care of yourself and good luck.

Thank you Chocolate Brownie.

I wish all the very best for you and your daughter 😊

xx

One last thought, have you checked the listed side effects of all the medication your on? Certain medications can cause fatigue in themselves.

Yes I have 🤔

And I am sure there will be an element of that going on.

However my CF has in hindsight been coming on for a long time .. A few years of flagging at the weekend and days of being washed out. Before my illness took over, precluding work and much else :(

That was all prior to the meds I'm on now. But yes of course your right. Always check our any interactions and diet too.

R and R and not pushing is my current mode.

Thank you again for your thoughtful advice xxx

I saw Dr William Weir in Belfast - he flew from his base in London (Harley St no less) and I am so glad I did.

There was no way I would have got that expertise near me NOR for as cheap. The man is not only knowledgeable, caring, understanding but is very reasonable and much cheaper than an ordinary private Dr.

I know its not exactly the north of England but he may hold clinics near you. If not it may be a good excuse to go crazy in the capital for a night :)

smilingjane profile image
smilingjane in reply to

Thank you and WOW.

This us just the recommendation I have been looking for.

Thanks Raff

😊

Hello Jane , my empathy goes out to you, I am 59 with fibro /cfs/treated sleep apnea, yes the days when we do some extra jobs and pay back day is around the corner, I live in the East of England in Suffolk, I did see clinic for diagnosis for ME/CFS but she wouldn’t diagnose as I have sleep apnea, I got to the stage of having maybe on my medical notes wasn’t good enough so it was my doctor who gave me the diagnosis after seeing me over a period of months. Yes we do differently need a medically trained person to listen to our needs. Xxxx

Hi Yasmintina

Thank you for getting back.

Did you receive medication that has helped at all and is your sleep apnea treated?

I have pain and stiffness now, (relatively new addition to my sympons) but odly just in my legs. It seemed initially to change from area to area , starting with my shin splint bones, each lasting for a month or so. Now it seems to be all the leg muscles.

A GP once suggested Fibro but I dont think it is because I dint have painfull pressure points 🤨

I have restless limbs too, but that is well managed with meds, so getting there....

Do you have sevear pain and is it adequately managed?

Thanks for your kind words and warm wishes to you.

Jane 😊

I am not qualified to answer but I have ME which is brain damage (encephalitis or similar) so I don't think you can add that to your problems. If you get no satisfaction from to your consultant go to your local A & E, explain your symptoms, don't let them palm you off, insist that you have the right test and to see a specialist.

smilingjane profile image
smilingjane in reply to Crabers

Thanks for that Crabers.

I will carry on with my search until I find my answers.

😊

Hi smilingjane.

I saw a wonderful consultant at the RVI in Newcastle. I think his name was Dr Gavin Spickett. I think he was regional director or regional consultant for me/cfs.

He lives in the Lake District and did clinics there. I think he also travelled to do clinics in parts of Yorkshire. It was a long time ago when I saw him, but I think he is still at the RVI.

There was another consultant I saw there as part of a research programme. Professor Julia Newton.

However, I have no idea if they do private consultations.

smilingjane profile image
smilingjane in reply to Troilus

Hi Troulus

Thanks for getting back

I saw this consultant, (Spicket) and he sent me away after a short consultation with a diagnosis of 'secondary chronic fatigue due to a lifetime of restless legs'.

His assumption was that my CF is caused by lack of sleep. I asked what next? and how long will it take for me to get better.? He said as I am on adequate RL med, (Oxycodone), that would help my sleep, Oxecodine and all Opiods are known to disrupt sleep patterns 🙁 He said I would begin to feel better but that it may take several years. I left the C. room quite tearful and no further forward.

At that time I didn't have pain, (I do now) and also didnt have lightheadedness on standing, (I do now). I cant walk much now, in bed or lying down most of the time.

I think he has now retired. I feel reluctant to go back to that team, cause he was head honcho and I am concerned that his colleagues will look at my past consult with him .... and that it will prejudice his 'view'. I felt fobbed off at the time.

One of the problems I have found with some medics is that if you look okay .....

And if there are underlying health issues such as Hypothyroidism they put your symptoms down to that.

Oh and if your a middle aged female... thens theres the menopause....

I need a consultant to listen, really listen to me and read my blood results. I am pretty sure he didnt otherwise he would have spotted my dangerously low B12. I'm now on daily jabs for that.

So sorry for the rant but I was not listened to and as a result I have gone markedly down hill.

Dimo you mind me asking about your experience, diagnosis you received and how you were helped?

Warm wishes

Jane 😊

Troilus profile image
Troilus in reply to smilingjane

Hi again. He ordered lots of bloods before I attended the clinic. He listened to me, examined me ( checking for fibro, I think.) Then he told me I had severe cfs/me. He told me it would take me 5 years to get back to being able to manage my own basic routines. ( I had been ill for 10 months and was a mess at that time.)

I did gradually improve, over the years. 11 years later, I am just about normal. I still have do nothing days, but I don’t feel unwell. just lethargic.

On the plus side, he did write me a brilliant report which got me early retirement.

smilingjane profile image
smilingjane in reply to Troilus

Gosh, we had a completely different experience, how strange.

I am glad that you are eventually a lot better and that you managed to get early retirement. Without that you may not have done so well with your health.

My endocronologist has suggested that if I am not better after all his endeavours ,(I am on a 3 month plan with him ). I ask my GP for a referral for a 2nd opinion.

These things take time though. The waiting time was around 9 months to see Gavin Spicket.

That's another reason I an looking into the private sector :)

Raffs, on this forum, recommended someone he saw. But then yours was a recommendation!

I am feeling aware that so much is down to individuals and interactions on the day It shouldnt be like that. We need consistency of service! It shouldnt be that folk, (sometimes) feel the need to reach out to the P. sector fir a medic that has the time to spend with them.

And I'd course many havent the funds for that

Sorry for rant no 2.

I wish you all the very best going forward.

😊

Troilus profile image
Troilus in reply to smilingjane

Yes, I waited 9 months or so to see Gavin Spickett.

I think because they can’t really do anything and there is still very little understanding of the condition we are very much left to our own devices. Either you recover or you don’t kind of attitude.

Thankfully, I also had a very good GP. When I went to see him I apologised because I had a whole page of symptoms. He said it’s ok. I’ll read you my list and you tell me if they are on yours. Which they were. He was screening me for B 12 deficiency. My bloods came back ok though.

He has now retired, but is still involved with a support group which he set up for B12 deficiency. I don’t know if that would be of interest to you? He does offer advice, I think.

I did start taking a vitamin b complex supplement. I think that helped me. I still take it, but if I miss for a few days, I go into lazy mode, so there might be something in it.

Sorry I can’t be of more help to you.

Thank you Trouilus

No, you have been helpfull 😊

Often hearing of others experiences is helpfull in itself.

Who runs the B12 support group? is it Gavin and Is this in Newcastle? That could be helpfull to me.

I think I need a CFS support group might be beneficial too at the mo though.

Your GP sounds very helpfull too.

😊

Troilus profile image
Troilus in reply to smilingjane

No, nothing to do with Newcastle. It is Dr Joseph Chandy and Hugo someone. I’ll need to look the website up.

Dr Chandy did a lot of research into B12 deficiency and was a key player in getting the protocols for B12 define your changed.

It is something like b12. org.

smilingjane profile image
smilingjane in reply to Troilus

Ah! Dr Chandry, yes, I have one of his books. He spent a large part of his life highlighting the inadequate treatment or should I say lack of treatment amid B12 deficient patients.

I can lok the group up.

Is he the GP you saw?

Troilus profile image
Troilus in reply to smilingjane

Sorry Smilingjane, I missed this response. Dr Chandy was my GP for very, very many years. A truly dedicated man. Very quiet, very quietly spoken. He has done an awful lot of good in our village. I trust him 100%.

He is also very honest and doesn’t fob you off with platitudes. I remember once when I went to see him, while very ill with cfs/me, he was pondering what he could no to help me. He said, the trouble here is, we don’t know what we are dealing with. How true.

He is also interested in adrenal insuffiency, but now he has retired I think his research into this has probably stopped.

I must admit I miss him.

Here it is

b12d.org/

The site is not secure, but it has a lot of info. You can also email Dr Chandy directly - the information is on the website. I don’t think he can prescribe for you, but he will be able to advise you. He is also very cfs/me sympathetic.

smilingjane profile image
smilingjane in reply to Troilus

Thank you so much for that.

Is he seeing private patients now do you know?

Troilus profile image
Troilus in reply to smilingjane

He has retired from general practice. My understanding is he will advise free of charge. Could be wrong, but I would be surprised if he charges.

smilingjane profile image
smilingjane in reply to Troilus

Amazing!

Thank you so much for all your help.

😊

smilingjane profile image
smilingjane in reply to Troilus

Thanks so much for that. Ill check out the website.

😊😊

You’re welcome. Please contact Dr Chandy. He has a wealth of experience and although he will not be able to prescribe for you he may be able to point you in the right direction to get some help.

Good luck.

smilingjane profile image
smilingjane in reply to Troilus

Thank you Troilus, I will

😊

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