churg strauss

[Naz2014]

my mum has been diagnosed with Churg Strauss and is under the care of a london NHS hospital. Her condition seems to have got worse over last month - she can barely walk now after long complaining of numbness and pins and needless in her feet and lower part of her leg. I am anxious that she is not being treated properly or correctly.

Her symptons started january 2013 with asthma and persistant coughing and was diagnosed in february this year after having raised eosonphil count in her blood and inflamed lining of stomach and losing considerable weight (due to not eating or drinking properly due to pain when doing so).

She is on steroids and mmf. which at the moment is 2 steroids and 4 mmf tablets per day.

My mums symptoms at the moment is barely being able to walk ( right leg first, now left leg) and pins and needles and numbness in feet. She also has for some time now suffered from ringing in her ears. She has started physiotherapy for her trouble walking, but I am concerned this is more a nerve problem? The doctors say it is unrelated to the disease and it is her muscles.

Her esonphil count is normal now and her asthma has got better. But other symptons seem to have got worse.

My mum is 65 years of age.

has anybody had similar experience with the disease? Can anybody recommend a health professional for a second opinion. I am very worried about my mum and that the diagnosis and or treatment is not quite right.

Thank you and best wishes to you all.

[LynneJ Vasculitis UK Volunteer]

Hi Naz

I have MPA ,a similar type of Vasculitis. It sound like the same symptoms as mine at the beginning. I would ask for nerve conduction tests as I did have nerve damage. Although nothing could be done about it, apart from easing the pain, once the Vasculitis was under control it improved a lot. Not back to perfect, but certainly but liveable. I believe nerves can regrow new pathways so physiotherapy will definitely help. Have you checked this link vasculitis.org.uk/about-vas... ?

Hope this helps. Wish your Mum well.

Lynne

[Naz2014 in reply to LynneJ]

Hi Lynne

My mum did have nerve conductive tests done when she was still able to walk normal but was having pins and needles and numbness in her feet and the doc said test was normal! I dont get it. It makes you wonder whether docs know what is going on.

We have an appointment with docs re: her condition this weds and physiotherapy after. will post what docs say. Thank you for the link, will check it out.

Best wishes to you.

Naz

[Ravi35]

Vasculitis specialist in London are hammersmith hospital , the ren department, they are a really good team. Professor Pusey he is the top doc there and very well known

[Naz2014 in reply to Ravi35]

I will check this out. Thank you

[ldwilliams]

I have buergers disease and this sounds similar to that, was she a heavy smoker by any chance?

as heavy smoking is thought to cause the disease by attacking the immune system and making the vein walls thicken and shut off the blood supply

[Naz2014 in reply to ldwilliams]

No smoking or drinking. Very healthy lifestyle. Very rarely had colds etc all her life. Started with adult on-set asthma.

[ldwilliams in reply to Naz2014]

Ah, ok

[luggsey]

My mum has vasculitus and was unable to walk for many months because of it. Even now she can only walk short distance with a stick. She has loss of feeling in her hands, feet and tongue.

This seems to be quite a usual pattern for many types of vasculitus. Nerve damage is usually the cause, if so it can resolve over time but it may be a long time.

I hope your mum recovers, please ask on here any questions you have, I found the support here very helpful when my mum was in the acute stage of her illness.

Keep asking questions of her doctors as well, if you go quiet then in my experience so does treatment....

[Naz2014 in reply to luggsey]

Thank you luggsey i will keep posting on here. It is just confusing as nerve conductive test came out normal ( for her age doctor says) but then why was mum feeling pins and needles and numbness and now she is having trouble walking. First one leg now another. Docs are saying it is unrelated to her illness and a muscle problem!

We have appointment weds. Will post what happens. Wish your mum well.

[cedric]

I am having same problems I have had a nerve conduct done twice am having another done next wk my dr is also doing other tests

[Naz2014 in reply to cedric]

I am going to ask for another nerve conductive test this weds. But docs seem to think it is unrelated to illness as previous nerve conductive test was "normal"

[Katie18]

Hi I too have churg SS and my main symptoms were asthma and damage to the nerves in my feet resulting in severe foot drop in my right side. To me it sounds like the disease could have caused nerve damage to your mums legs. The nerve conduction studies are quite unreliable and dont always pick up everything. A good consultant who knows about Churg SS would normally look at the possibilty of nerve damage. Keep questioning it. There isnt much you can do to repair nerves and they do repair extremely slowly but at least your mum would be given proper pain relief as nerve damage is very painful. also correct orthotics help and your hospital should have a podiatry or mobility team who can help. i hope your mum is feeling better soon

[Naz2014 in reply to Katie18]

the consultant in rheumatology (whose care my mum is under) said nerve damage is possibility but nerve conductive test was carried out by another doctor in same hospital. However, consultant now says that he believes mums recent difficulty in walking is not related to CS. Mum has pin and needles and numbness in feet (which he says is prob down to nerve damage), but mum recently having difficulty in walking (which is coming from her hip /upper buttock area) he believes is not related to disease and is a separate muscle issue.

we have appointment this Wednesday so will see what they say and will post after. I wish you well and thank you for your well wishes.

[Derek]

My CSS was very similar and I was given chemo/steroids over 6 mths, the steroids being tapered off gradually. CSS affects all muscles so numbness, pins & needles feeling are always there. As CSS progresses without proper treatment nerve endings will deteriorate to the extent that muscle control will become increasingly difficult. Correct early treatment is essential, not forgetting that the heart is a muscle. Insist on seeing Professor Pusey.

[Naz2014]

Thank you for your post Derek. I wish you well. My mum has been on mmf and steroids for some months now and is seen every 3-4 weeks by consultant at hospital together now with once a week physiotherapist.

I don't know whether my mums nerve damage is progressive or whether the damage had already happened and symptoms take time to show. Docs reckon this muscle problem is unrelated to CSS. I will discuss this on Weds with docs as mum has an appointment.

I will make contact with Professor Pusey, as I would like a second opinion for mum.

[Hidden]

Hi Naz2014,

I would echo what everyone else has been saying and get that 2nd opinion from Hammersmith. The questions to ask your Mum's consultant is how much experience they have in Vasculitis and how many cases of CSS they have treated previously. It is such a rare disease that very few Hospitals can be deemed " expert ".

Did your mother have Cyclophosamide infusions when they diagnosed her? As the others have said nerve conduction studies are notoriously insensitive and if it is CSS that is causing her symptoms then it is obviously not under control yet.

I get the impression from your post that you are not feeling listened to and your concerns not taken seriously. If you look at the VUK website there is a very good Vasculitis route map and John Mills who runs the helpline is very knowledgeable about Vasculitis.

No one will care about your mothers health as much as her and her family. If your Mothers consultant truly wanted her to have expert treatment then he will refer you on. Good luck and let us know how you get on.

Best wishes

Keyes

[Naz2014 in reply to Hidden]

Thank you Keyes. No mum has not had any infusions. I will be asking these questions wednesday as we have an appointment at hospital. Plus i will be making appointment with her gp to discuss my concerns.

I will look at the route map and vuk website in detail this evening. Thank you and i will post progress. Kind regards

[Cloe]

Hi naz,

My sister has CS and it took ages for diagnosis and has suffered nerve damage. She was at Basildon hospital first and although her rheumatologist was ok the communication and information was poor. I then got my sisters GP to refer her to addenbrookes in Cambridge and they are fantastic. They have a vasculitis clinic and offer the best care. If you can travel there I'd recommend it every day of the week.

My thoughts are with you as I can relate to your post.

Take care

Chloe x

[Naz2014]

Thank you Chloe. I am makng an appointment with mums gp to discuss. Wish your sister and you well.

[Hidden]

I hope your Mums appt goes well today Naz2014 and they address your concerns. Keeping my fingers crossed for your mum.