Thoughts on neurologists letter

[annie330]

I saw the neurologist that week and he has copied me in on hs letter to my GP and the rheummatologist.

Sorry in advance if this is long winded he has listed the following as diagnoses:-

SLE

Anti beta 2 glycoprotein antibodies

Cerebral vasculopathy (probably not vasculitis)

Muscle cibtraction headache

Diabetes

Hypertension

Patent foramen ovale (small)

In the body of his letter he has put that on balance of probabilities he thinks the episode of brachial neuritis was likely to be due to a vasculitis, he thinks my recurrent focal neurological symptoms (what we say are like TIA's) are more likely to be due to a non-arthritic vasculopathy, than an active vasculitis. I do recognise this as part of her lupus illness, on the other hand I do not think the events are likely to be part of her APS.

The difficult we have is knowing how to manage her recurrent focal neurological symptoms which are probably occurring two to three times a month. She was unable to tolerate Verapamil and indeed this seemed to make the headaches worse. I should stress that I think the headaches are likely to be of a muscle contraction aetiology rather than lupus headaches. I note that she actually had a single course of Cyclophosphamide and then rapidly went on to Rituixmab. I have found Rituixmab to be helpful but I have one patient who unequivocally responded to Cyclo but has not to Rituximab. This raises the question therefore whether when she is next due immunosuppressive treatment that it might be worth considering some pulses of cyclo rather than Rituximab.

Turning to the headaches I have said that I will discuss this with one of my colleagues who has experience of using Botox for this type of headache.

Above is pretty much all of the letter and any thoughts/comments would be gratefully received.

Just for a bit more background when I saw him last March he said my headaches were due to a problem with a muscle in my neck and he recommended that I have physio. I did go but at the first appointment she said that there wasn't an issue, I did see her again (I paid privately so that I didn't have to wait cos I wanted to stop the pain) she told me I would be wasting my money going again and she didnt want to see me again and she wrote to the neuro words to that effect.

I am happy to try things to get rid if the daily pain but my thoughts are:

1. Already tried physio for muscle contraction and it did nothing and physio just said it was a bit tense but most people are

2. Botox injections in the back of my head, they're not even going to be for my wrinkle forehead or eyes (ha ha), in the appointment he did point out that I have a wrinkle in the middle of my forehead and that this means I have an over active muscle.

3. Cyclo???? I only had one round (3 pulses) batch in 2009 and it wasn't nice.

I know this is a long post so thank you for reading it.

Louise

[John_Mills Volunteer]

I've already commented before Louise that in my opinion you should go elsewhere for your treatment.

This chap seems to hide behind rather meaningless non specific terms like "vasculopathy" - which simply means disease or illness of the blood vessels and would include vasculitis among other vascular diseases.

Patent foramen ovale - a congenital heart condition - have you had angiography or an MRA scan to demonstrate this? Normally this is the realm of a cardiologist, not a neurologist. Of course there is the foramen ovale in the base of the skull through which passes one of the important cranial nerves supplying the face - but you would have problems if that was not patent! Muscle cibtraction? Possibly a typo.

Have you been diagnosed with diabetes?

Lupus and anti beta 2 etc are linked.

I advise you again to see your GP and insist on a referral to David Jayne at Addenbrookes Hospital in Cambridge. He is one of the leading experts on both vasculitis and lupus. If you go there you will be seen in a multi-disciplinary clinic, not shunted from department to department. Believe me, it will be worth the journey!

[Kentish_Man]

I agree with John and Susan. I was wrongly diagnosed/treated until I asked for a second opinion. Doctors do sometimes get things wrong and, after all, it is your well being that is at stake here.

[annie330]

Hi John

Yeah it is a typo should say muscle contraction. I have had type 1 diabetes for 18 years and had the PFO diagnosed in 2009 following a hospitalised TIA, after that I had lots of tests to try and identify the cause. The PFO was found by the cardiology department at Leeds General Infirmary (memory not great but had a bubble test and something else, one of my friends works there and she stayed after her shift to be with me as the bubble test wasn't planned and they put a line in with dye?fluid).

I have an appointment tomorrow with my GP and I have a list to go through with him, top of the list is a referral to see Dr Jayne.

After I posted this I thought that maybe I sounded harsh of the neuro, in bed last night I was thinking that he is looking at different treatments and different options but I'm sure everyone here knows its a frustrating journey. I don't mean to sound critical of any of the Drs that treat me but it does get you down. I have thought am I hung up on a diagnosis but then I think what's wrong with wanting to know 100% what is causing my problems and maybe if they did know the treatment would work. I feel like I'm not getting better, not staying the same but getting worse and whilst I really appreciate that I haven't had a big attack/lasting damage something is slowly ticking away.

When I read other peoples experiences I feel like lots of you have a flare and a big issue then get under control for a while, I feel like something is always simmering away - hope this makes sense.

When you google vasculopathy everything that comes up is "scholarly

Articles" and hard to digest or link into my issues, some of the articles refer to vasculitis and from what you told me before I know this is a bit of a catch all.

Bizarrely yesterday I was headache free until about 8.30 but alas on waking today my pain friend is back with a passion, my eyes are a bit iffy today too.

Dont know what others find but my typing skills have got shocking, even though I read things about 3 or 4 times before posting there are still errors and I really dont like that.

I know from readings people's questions and blogs that the road to diagnosis has been long but mine was quite quick and then the difference of opinion and this new term vasculopathy only came up last March. My husband has said that I should just accept that's what the neuro wants to call it and it hasn't changed my treatment so not to let it bother me.

Sorry I've really waffled on and now I'm late for work, which I don't even feel like going to (this is unusual for me as I normally love my job and even when feeling really ill I don't like staying at home)

John - I'll keep you posted on how I get on with my GP.

Thanks for listening to me.

Louise

[Elainekay42]

Hi Annie ,

my son is now under 5 different consultants. Immunologist, gastroenterologist, Dermatologist, Rheumatologist and now being sent to an Opthalmist! My GP is refusing to refer to Addenbrookes as she says all the people he is seeing know what they are doing. The GP just does not get it that we need one person to oversee it all. very frustrating.

I hope you GP is more sympathetic than mine and makes the refferal for you.

Good Luck.x

[Zebra]

I can only echo what has been said about Dr Jayne and his team. Do ask for referrals.

Elaine - you have the right to a referral. So ask again. See a different GP if need be and stress the need for an overall lead consultant who is a vasculitis specialist. It doesn't have to be Addenbrooke's (though they are world class). There are other leading Vasculitis specialists in London, Birmingham, Aintree (Liverpool) and many other areas. But do persist. Your son needs joined up care. Who is leading his care and where?

Louise - I get similar muscular headaches and have found heat and cold packs to help, plus optimal deep breathing, relaxation/meditation, darkness, hydrotherapy and sinus treatment. I do hope that you can get seen by a neurologist specialising in Vasculitis. I can recommend Dr Desmond Kidd at the Royal Free as well as Dr Alasdair Coles at Addenbrooke's from this angle.