Is there anyone out there suffering from churg-strauss syndrome which has damaged their nerves?

[Katie18]

It has caused foot-drop for me and I want to know if it will recover, and if so how long it will take. My consultants are pessimistic. Also it would be useful to know what other symptoms churg-strauss sufferers have?

[Hidden]

I have WG but suffered drop-foot for a few months due to peripheral nerve damage but whilst I still have the damage, my foot has returned to a normal gait. I can't say any one thing contributed to the improvement but coincided with coming off cortico-steroids.

[Tidgypud]

Hi i was diagnosed with Churg Strauss in june 2010. I have nerve damage to my left foot and lower leg and my right hand. I had severe foot drop at the begining. My foot drop did improve during the first 12 months but it has not returned to normal . I still have a lot of nerve damage to my leg and foot . My hand improved as well but again not back to full use. I would strongly agree with the words "use it or lose it " though because i feel the improvement would have been less if id not pushed myself through the pain in the early days.

[LynneJ Vasculitis UK Volunteer]

I have Microscopic Polyangiitis, diagnosed in 2010. I too had severe nerve damage to right foot and some in left foot. Also damage to left arm. The arm and hand has improved and I feel is still improving a little bit at a time. I also agree with 'the use it or loose it'. My feet feel a whole lot better when we have been for a walk and worse when I have been sitting around.

One doctor said it could take up to two years for them to repair. My question now is do they then just stop mending or slow down or what?

There is an article on en.wikipedia.org/wiki/Nerve... which states that ' the peripheral nervous system has an intrinsic ability for repair and regeneration'

I also read an article about food that repair nerves

livestrong.com/article/2850... I found it interesting because when I have my blood tests they always query say some levels are wrong and it may be due to lack of folic acid and B12 but on having separate blood tests for this it is OK and may be due to Azathioprine. They also always ask if I drink alcohol (which I don't)

I wonder if a supplement would be good or a waste of time and can you have too much? I will be showing to my consultant when I see her in May so I will let you know what she says.

I still have numbness and cramp if I overdo it and take painkillers. I have to concentrate when walking as I trip up! But having said can now move about nearly normally so feel there has been a lot of imrovement.

I think we can be cautiously optimistic

[Mumito66]

Hi I have had CSV for 17yrs and I have notice that when I am in bed my right foot seem to be weaker than my left causing a slight foot drop and I consciously put it in the correct possition each time. I have never mentioned this to anyone perhaps I should. I have alot of nerve damage and had right ulnar nerve palsy my arm was virtually paralysed. It has improved over the year but if I am cold my hands and legs go numb. I have had alot of nerve conduction tests( I call these torture tests) and I have alot of nerve damage to my legs, hands and arms.

[Katie18]

Thank you for replying to my question and for your advice for cautious optomism

[Julia1]

Hi Katie, I have only just seen this blog so I'm a little late replying. I first had Churg Strauss 9 years ago. I had just been diagnosed with asthma and have always had sinus trouble and rhinitis. I lost the use of my arms and legs from elbows and knees down and had a dropped ankle on my left foot. I was told that the nerves would regrow (Sensory and motor nerves) but at a very slow rate and they mainly did! I still have times when my hands or feet or both go completely wooden - does anyone else get this?? and I have the glove and stocking feeling all the time. I find it difficult to do fine fiddly things and have only just started mending anything with a needle and thread - perhaps that's just laziness. Of course there's the tiredness issue but with vasculitis that seems to be a given.

Hopefully you can look forward to things improving, are you wearing a support for the ankle? I can't remember if Physio or Occupational health gave that to me. Also, I had to get an automatic car which I still have but can also drive my husband’s manual now. Ten months after I was diagnosed I was hobbling around a hockey field which I think really improved things.

Good luck.

[Katie18]

Thanks for your reply Julia. I also have bought an automatic car and had it converted to a left foot accelerator. It's good to hear things improved for you - and hopefully they will for me too.

[lillylangtree]

Hello Katie, I was also first diagnosed 8 weeks before I came down with Churg-Strauss and in 2007 I was rushed to emergency after taking Singulair(still feel is made it happen) with the most horrible pain I have ever experienced in my life in both legs, feet and hands. I lost the use of both legs and right hand. I had foot drop in both feet. I was on 100 mg prednisone in hospital and in critical care for a month and a 1/2 to learn how to use a walker, wheelchair, eat and shower. I was devastated, thought I was surely going to die and lost my spirit. I decided to go to a Naturopathic Doctor, stopped all drugs, methotrexate,, oxycodone, percocett, gabapentin, valiuum all in one day and tapered slowly the prednisone,very slowly. I couldn't stand without falling and husband had to walk me like a little girl. I can now walk, my ankles are working, I can lift them, drive, ride my bicycle and now I am even working and my energy is coming back, little by little. I had to change everything, eat nothing but organic foods, nothing processed, pure fresh water, no sugars whatsoever, including fruits, and I have been drug free since November 2007 and getting better all the time. I do believe we have other alternatives to allopathic medicine, they work for me and I am so grateful I got off the allopathic path. Although allopathic medicine saved my life, steroids, pain killers, etc. for me it made no sense to destroy the one thing I needed more than ever, my immune system. Although I still have asthma, it is getting better as well as I am on a raw food diet now and improving, also taking homeopathic medicine for asthma. Good luck to you Katie. You can get better and you can feel good again...

[Pinksky313 in reply to lillylangtree]

Do you believe Singulair caused the CSS? I do believe it caused mine . I live in a NJ ,my name is Elena we love to chat thank you

[lillylangtree in reply to Pinksky313]

Elena~ Yes I do believe that Singulair is the medication that caused Churg-Strauss Syndrome. There are more of us that do. When I was admitted to emergency in 2007, I told the Emergency Room Physician that after taking Singulair for just a few days is when I started losing the use of my legs and even quit because that's when the illness took over my entire life.

[Patsyjuneruth in reply to lillylangtree]

May I ask how you are doing now?

[janieg]

I developed a drop foot 14 months ago due to CSS. I wear a splint everyday & slowly I am getting feeling back in my foot, I still can't wriggle my toes yet. The nerves are very slow to repair so don't give up hope. I have also lost sight in my left eye which is permanent ): due to CSS (:

[Laurie1316 in reply to janieg]

Hi Janieg,

I also have permanent loss of vision in my left eye, which I was told was very rare in Churg-Strauss. I have never heard of another case like mine and yours. I was diagnosed in August 2013. Besides my eye, my heart was affected and I also have neuropathy in my right hand and arm and in my two feet and right leg, but never had any footdrop. Otherwise, I am doing find. No more asthma nor sinus problems. I would very much like to hear more about your experience with Churg-Strauss. If you are interested, you can email to me at [e-mail]

[Patsyjuneruth in reply to janieg]

May I ask how your drop foot is now?

[Katie18 in reply to Patsyjuneruth]

Hi Patsyjuneruth I no longer have foot drop, my nerves grew back very slowly. I can walk using orthotics - very steep innersoles. My nerves didn't grow back perfectly and I still get sensations of going cold and numbness and I take amitryptiline at night to help with the soreness. My feet are a bit mishapen as my foot arches fell completely and so I get pain on the ball of my foot. A foot surgeon in Leeds is currently looking at whether to operate to improve things for me. But I can walk and I am lucky that the nerves did grow back.

[davebw]

As long as you have not had a stroke I can fix drop-foot, if you want to no more my email is [e-mail]

[Tunabird]

I developed Churg Strauss 3 years ago and nerve damage in my feet and slightly in my legs. I am told it's really hard for the nerves to repair. Some people think it can repair with diet...but...my doctors were also pessimistic. I wish you well.