Tingling in all four limbs.. What type of vasculitis?

[judyann]

Hi everyone. Going for emg in 3 weeks. Tingling is in arms and legs. Started in only legs for a long time. Is this every form of vasculitis? Thank you for any help with this..

[grindhaus]

Judy, is it possible for you to see someone sooner? I don't really know how bad your symptoms are.

I experienced stiffness and then onset of "pins and needles" tingling in both legs/feet over 3 days and on the 4th day could barely walk, went to the ER. Tingling was beginning in my hands at that point. I was admitted that night for the next 7 days. They started me on Prednisone the next day 30mg, and upped it to 60mg 3 days later as my other symptoms got worse. I could barely walk from the pain and semi-numbness. They did a muscle biopsy on my left leg calf to confirm eosinophilic vasculitis.

Later, after diagnosis of EGPA- ChurgStrauss was confirmed, they told me it was good that I did not wait after my legs began to show symptoms, that the nerve and muscle damage from the vasculitis could have been much worse. This was in Dec 2016. I am walking much better now, after PT and months of treatment, but muscles in my legs are damaged and I expect more months to years for recovery; I hope to recover my strength eventually.

If you can be seen by someone very soon, immediately before it gets worse, please do.

[judyann in reply to grindhaus]

Hi.. This has been going on for 5 years.. Was very ill and tingling started. Still trying to get diagnosed. Emg testing in a few weeks.. Hopefully it shows something.. Had mri and all blood tests.. So frustrating.

[Gbrown24]

Hi Judy I have a constant tingling and pulsing in all my limbs as the vasculitis has caused problems with my central nervous system and caused nerve damage. My vasculitis doesn't fit into a category so they are just calling it ANCA associated vasculitis as I have many symptoms that cross over into different categories.

[judyann in reply to Gbrown24]

Hi.. Was that your only symptoms? I was so ill and the tingling started at the same time.. Still not diagnosed. Was tested for anca and was negative... I have nerve testing in 3 weeks. This is not normal.. So frustrated.. What were your other symptoms?

[Gbrown24 in reply to judyann]

No I wish it was my only symptom... the tingling came later after various parts of my body had swollen up. I had a constant high fever, dizziness, eye problems and nausea. I had nerve conduction studies done and they showed nerve damage. I'm waiting for my rituximab treatment to start hopefully sometime next week to see if it helps. I also get horrific shooting nerve pains in my legs at night on some nights, they last for hours and nothing takes them off. Are you on any medication?

[judyann]

No.. The doctor doesn't want me to start any prednisone until I get the tests done.. She said I need an mra but won't send me for one. I have mostly central nervous system problems and now gastro symptoms. I go to the gastro on Thursday.. They say they need one test to show something and they will treat me. Then why aren't they sending me for all the tests? Will the nerve function test show that it's vasculitis? Or does it just tell that there is nerve damage?

[Gbrown24 in reply to judyann]

They can only show the nerve damage unfortunately. I've had a series of different MRI scans, X-rays and biopsies. The nerve conduction studies are just one piece of the jigsaw puzzle. If it's vasculitis you will have other factors in your scans and blood tests to help them to diagnose you. It's such a complex condition the diagnosis takes a long time.

[judyann]

I have had so many tests also.. I feel like I'm finally getting somewhere.. No one even looks for vasculitis. It's amazing. It must be that rare. Thank you for listening to me.. I will let you know what happens.. Judy

[Hidden]

Hi Judy,

The most important factor in getting a diagnosis of Vasculitis is the Consultant that you see and their knowledge and experience. Nerve conduction tests only confirm if there is nerve damage, they rarely diagnose the underlying disease.

Are you in the U.K.?

[judyann in reply to Hidden]

Hi. No I'm in the US. I have a vascular doctor that will see me if I have a positive test for something to show vascular inflammation. I will find someone soon. I have to.

[Hidden in reply to judyann]

Vascular Dr's don't treat Vasculitis, you need an experienced Rheumatologist

Have you been in touch with the Vasculitis Foundation, they have a list of appropriately experienced Consultants. It s the Dr that you see that makes the difference, it's very difficult to get Vasculitis ruled in or out otherwise.

vasculitisfoundation.org

[judyann]

Hi.. They moved up my emg for Monday. And my rheumy is going to work with the neurologist.. If nothing happens, I will go to a vasculitis specialist. I have a few around but not close.. Thank you for helping.. Will let you know what happens.. thanks

[Assie]

Hello and Merry Xmas to everyone. Have lived with Churg strauss vasculitis for 11 years now and my message is that don't loose faith, keep exercising and heed advice of specialist. Rheumatologist has treated me and still does. 2 bouts of chemo, prednisolone ( high doses for about 6 months) gradually tapering down to 3mg. Symptons gradually decreased but constant tingling, pain in feet, legs hands is something I have to deal with on a daily basis.

My way of dealing with my condition is to keep busy, little walks, swimming, yoga and enjoying the simple pleasures in life, especially grandchildren and good friends.

Life is still good so find your happy space.

May 2018 be kind to us all.

Assie