Recently diagnosed brother has lost feeling below his knees

[georgewhdoors]

Hi,

My brother was diagnosed about 2 months ago with this condition. He has had 2 treatments of cyclophosphamide and seemed to be responding okay. Then suddenly over the weekend his hands went numb and he has now lost all sense of feeling in his legs below the knees. His neurologist thinks that the cyclophosphamide is not killing his immune system sufficiently. He had scans yesterday on his back & head so we are awaiting the results.

We are really, really worried and he is very scared. He is 63 years old. Has anyone had or heard of anything like this? Our concerns are obviously whether the sense of feeling in his legs and hands will return, and also whether this means that he is not responding to the drugs, in which case is there any alternative? We are obviously new to this whole condition so any advice at all would be appreciated

Cheers

[pberggren1]

All I know is I have never had this symptom of loss of feeling in limbs before. I think some others on here have. And I also know that oral cyclophosphamide is much more effective than IV form. Your brother should be seeing a Wegs specialist or at least have his doc consult with one. You can go to the Vasculitis Foundation website for a list of docs. The best are found at Mayo, Rochester and Cleveland Clinic and Boston University, and JHU in Baltimore. Welcome to the Forum.

[georgewhdoors]

Thanks for your reply. We are actually based in the UK so any idea how I find out about specialists in the UK?

[Hal]

Georgewhdoors: Welcome to the forum. I am sure others will soon join and answer your questions too, but I will relate my experience with the Neuropathy, or nerve damage. This "might" be similar to what your brother has experienced. Everyone experiences different symptoms. I agree, it is VERY scary.

I too have lost nerve feelings. For me most of the damage is in the legs and feet. My understanding is that the Wegs basically reduces blood supply to some of our vitial intenal organs, including our nerves. Last year when I was rapidly deteriorating, I was even losing vision in one eye. I believe that was being caused my my sinus imflammation compressing the optic nerve. Scary. Thankfully I managed to get diagnosed quickly and the vision settled down, but I am left with the other nerve damage.

What both my Rheumatologist and Neurologist have told me, is that the nerves "should" "hopefully" regrow in a period of 2-3 years, once the disease is under control. Others here on this forum have I believe stated similar.

I agree with Phil above, you need to be seen by a Wegs specialist. I would question if your brother is being treated aggresively enough? Hopefully folks in the UK can offer guidance there. It is good that you are already seeing a Neurologist. He might do nerve conduction tests to measure the damage.

Good luck and please, ask anything here, as what your brother is going through is indeed scary.

Hal.

[NicShaf]

georgewhdoors,
I'm sorry to hear about your brother. I have heard of Neuropathy with Wegs, although I have not experienced it myself.

I agree with Phil, the general consensus is that Oral Cytoxan is more effective for Wegs than the IV form because it can be monitored and adjusted according to each patients response. Maybe you could ask your brothers doc about this? When was his last dose of cytoxan?

[LisaMarie]

We have several Weggies in the UK hopefully they will chime in soon to help you find a specialist...will be praying all goes well for your brother ....i know it is scare and it is true that nerves should regrow...hope all goes well:unsure:

[Hammy8241]

Where abouts are you / your brother in the UK?

[Sangye]

Has he truly lost all sensation below the knee, or "just" in some areas? The reason I ask is that Wegs can cause peripheral neuropathy, typically only affecting one peripheral nerve at a time, and typically only on one side. There are several peripheral nerves involved in sensory distribution to the lower legs/feet/ankles. To lose all of them at once on one side is not likely, and the likelihood of having it occur bilaterally is nil.

This does not sound like Wegs damage. It does sound quite serious and if the neurologist is stumped he should get to another one immediately. I don't know if cytoxan can cause such damage--maybe.

Does he have normal motor function below the knees?

[renidrag]

I don't think it is the Cytoxin, I had and still have neuropathy from the knees down, as the disease was put in order through medication, the neuropathy abated some. I did notice that if I was sitting with my feet up and rotated the ankles to the utmost I could stand, the next day was a little easier. I still have numbness in most of my toes, and the "pads" of my feet and heels. They have a drug for it with no guarantees but weight gain, so I passed. Where I am now is bearable, but I understand the uncertainty.
Dale

[Sangye]

Dale, did you have complete numbness from the knees down? That is the key.

[jeniban]

I too got peripherial neuropathy in both feet. It started on top of my Rt foot then progessed within 2 weeks to both feet and legs. Then i developed foot drop in my Rt foot and weakness ++++ in both legs. Thank fully most has resolved with a some pins and needles in both feet. This took about 18 months. 12 mths on oral CTX and now Imuran. i also found than oral CTX made my feet painfully cold for about 6 hrs after each dose. There is hope for a full recovery:biggrin1:

[renidrag]

Dale, did you have complete numbness from the knees down? That is the key.

I would say no. But there were times I felt I was walking from memory.
Dale

[georgewhdoors]

Hi - thanks everyone for your responses. My brother lives in Wolverhampton. It is truly uplifting to find a group of people so willing to help and share their knowledge. I have passed your responses on to my brother so hopefully they will help

[Hammy8241]

Hi - thanks everyone for your responses. My brother lives in Wolverhampton. It is truly uplifting to find a group of people so willing to help and share their knowledge. I have passed your responses on to my brother so hopefully they will help

I think thats is Jacks area. I'm sure he will point you in the right direction for WG specialist help.

[Tippon]

Hi George, welcome to the forum :)

I've had some loss of feeling in my hands, and also some pain in my legs since I was diagnosed at Xmas. I lost all feeling in the back of both hands, and most of the feeling in the little finger of my right hand, along with some feeling in the little finger and ring finger of my left hand. My doctors think that it may have been due to the number of venthlons (needles) that were put into my hands while I was in intensive care, rather than due to the Wegener's, but most of the feeling has now come back. My right little finger was the most affected, and the feeling is slowly coming back there too. Hopefully, if it was down to the Wegener's, this is a good sign :)

The pain in my legs has been caused by a build up of fluid, which has also caused my legs to swell up. If your brother has fluid build up, it could possibly be putting pressure on the nerves, like when you sit on a hard surface and your leg goes to sleep. It might be worth getting his doctor to check that, even though it's a long shot. I was put on Frusomide, a water tablet, which helps me to pass water and get rid of the excess fluid. Only downside is, I now pee like a racehorse, at least once an hour! :tongue1:

I know it's hard, but tell your brother to try not to worry. Getting stressed out and upset is only going to make him feel worse. If he's able to, tell him to go for short walks. It will get the blood flowing in his legs, and may help to relieve them. It will also help to take his mind off things for a while :)

Have a look at the link in my signature. I've built a website to complement this one, but based in the UK. It's a work in progress, but the idea is to give us localised info :)

Hope this has been some help :)