Not diagnosed yet

[connie]

Hello, again,

I was wondering, if anyone, before they had been diagnosed wih Lupus, was diagnosed, with a Periphial Nueropothy?
Also, I have a hard knot on my right thumb, that hurts like crazy, I have arthritis there also!

That is what they are calling, whatever is wrong with me!

Thank You!
Connie

[cath]

Hi Connie,

I'm hoping someone else who has personal experience will be able to share with you, as I haven't had this problem

Peripheral nephropathy isn't a seperate disease, it is a symptom that can happen with several diseases.

The most common cause is the population in general is diabetes. There are people with SLE who have nerve involvement. Sometimes it is the peripheral nerves, then it is called peripheral neuropathy. There are other causes too. So, it sounds like the doctors have worked out that you have this symptom, but maybe haven't come to a firm decision about why? Does that sound right?

What are the doctors doing to work out what illness is causing you to have peripheral nephropathy?

Do you know what sort of arthritis you have in your hand? Sometimes if the arthritis is deforming the joint, it will be swollen and painful, which is maybe the lump you are feeling? HAve you shown a doctor your thumb?

It sounds like you have a few things going on . I hope that you start to get some answers about what is wrong with you soon. Keep on at the doctors, and stick up for yourself.

X C X

[Pollyanna]

Hi Connie,

It sounds like your doctor(s) are on the ball with you, but like Cath said, be sure to stay on them. If you read everything you can find about arthritis and lupus, it will help you. The more you know, the better you will feel. One suggestion many people give is to keep a diary or calendar or some sort of history while you are in the diagnosis phase. It really helps to keep a clear record of all symptoms, the time of day, activities at the time, what you ate/drank, etc. It's a pain but it will help.

As for the neuropathy, I've had it off and on many times in the past 20 years or so. (I'm 40 something now) Whilst pregnant, it was due to diabetes; once it was due to carpal tunnel syndrome; once it was due to a pinched nerve and now I don't know what's causing it because my doctor won't call me back! But that's another thread!!

Good luck, follow your doctor's advice, read, read, read and keep coming back here! Take care.

Pollyanna

[Clare.T]

Here's a very good article on peripheral neuropathy. At least it seems good to me and is from NIH, US National Institute Health so I suppose it's reliable.

http://www.ninds.nih.gov/disorders/periphe...lneuropathy.htm (http://www.ninds.nih.gov/disorders/peripheralneuropathy/peripheralneuropathy.htm)

Another overloooked cause of PN is vitamin B12 deficiency. This can be from dietary deficiency, most common these days in people on very restricted diets, such as vegan, but another cause might be pernicious anemia when the body can't absorb the B12. Injections are needed to bring levels up to normal and then maintain them.

You'll see too that it can be caused by inflammatory conditions such as lupus.
Quite a few of us suffer autonomic nervous dysfunction with symptoms like irregular heart beat and problems with temperature control.

My PN - numbness, tingling and lack of sensation in toes - was caused by a medicine but not one usually taken for lupus.

I think the nodule could be related to rheumatic type illness.

I hope you get some answers soon

Clare

Added forgotten link

[connie]

Thank You, for your help.

My Doctor has decided to just treat my symptoms, since they have ruled out
Diabetis & quite a few other things.
I get so tired of not knowing & wondering?

Not all of my family understand. When I read so many of the posts, from other
people, it is like reading my story.

Thanks again!
Connie

[balla]

My daughter has this illness due to her b12 and not being able to absorb it she is 20 and has been having b12 injections every three months since 18.Although she started with psycosis at 12.here is a fact sheet about this disorder hope it helps.go to http://www.ninds.nih.gov/disorders/periphe...lneuropathy.htm (http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm)

hope this is ok on this site hope to chat in the chat room some time balla

I to have this disorder as i have vascular disease and nueralgia in my face which is another symptom.Alos the spasms in my hands.amitriptyline. and tegratol
are what i take for the pain

[peonyprincess]

I too have PN and I am not diabetic and am not anemic, however, I do like to do things a little differently. Who knows why some things happen......I sure dont.

Nancy

[jujubean]

Hi All!

I was just wondering what kind of symptoms you have with NP?

Thanks,
Julie

[peonyprincess]

The symptoms that I have experienced with peripheral neuropathy are the following:

tingling
numbness
cramping
foot-drop.....when walking I sometimes drag my right foot a stumble a bit
stinging sensations

I am sure there are others and not everyone will have the same experiences. If you do have these issues going on, it is best to notify your doctor as soon as possible.

Nancy

[Raglet]

here's a useful article about pn

Peripheral Neuropathy (http://www.aafp.org/afp/980215ap/poncelet.html)

Have you had nerve studies done ? Mine showed sensori-motor axonal neuropathy, which is thought to be caused by my lupus. But, there are lots of causes of pn, and many people have it without knowing what caused it.

I have numbness and loss of movement - two foot drops and some weaking in one leg. Actually sometimes i suprise myself with how numb i am, i sort of forget about it until I find a stone in my foot that i hadn't felt in my shoe.

If you hadn't seen a neurologist and had nerve studies done, it may be something you want to think about doing depending on the severity of your pn

hth

raglet

[connie]

<div class='quotetop'>QUOTE(Raglet @ May 2 2006, 08:28 AM) Quoted post</div><div class='quotemain'>
here's a useful article about pn

Peripheral Neuropathy (http://www.aafp.org/afp/980215ap/poncelet.html)

Have you had nerve studies done ? Mine showed sensori-motor axonal neuropathy, which is thought to be caused by my lupus. But, there are lots of causes of pn, and many people have it without knowing what caused it.

I have numbness and loss of movement - two foot drops and some weaking in one leg. Actually sometimes i suprise myself with how numb i am, i sort of forget about it until I find a stone in my foot that i hadn't felt in my shoe.

If you hadn't seen a neurologist and had nerve studies done, it may be something you want to think about doing depending on the severity of your pn

hth

raglet
[/b][/quote]

Hi!
I have had 3 different nerve studies & I forget what they called it, but I to have the numbness & tingling, also
weakness in legs, not knowing if I am going to fall or not.
I use a cane now, just in case. My Drs. are stumped. My Brother, wants me to go to his Dr & I am going to try to see if maybe, he can figure something out. Is it harder, for you guys not knowing or knowing what you have?
Thank You!
Connie