Sjogrens with Peripheral Neuropathy

[arnie]

Hi all, from new member.

I am a 60 year old male & have Peripheral Neuropathy in my hands & feet.
It has been progressing slowly but surely over the last eight years.
All tests to find the cause during that period had come up negative.
Recently a different Neurologist organised a lip biopsy & got a positive result for Sjogrens.
It was good to finally know the cause, but I was surprised & initially queried the result as I had none of the usual symptoms.
I'm told, I'm in a very small group to have only these symptoms.
Other than the Neuropathy I am in good health & fitness.

So on this forum I am hoping I may find someone else who is in a similar predicament, to share notes with.

Thanks 

[pgf54]

Arnie, i too am a 60 year old male, and am in the process of seeing a rheumatologist,for the first time  so have no diagnosis yet.........I developed peripheral neuropathy of my feet this year , which started in the toes of one foot and spread to both feet.  It seemed like it went to the ankles but is now more noticable in my toes.  It causes loss of ability to feel a pin prick , i feel the touch but not the sharpness and when the weather is cooler i just cant get  my feet warm though i wear two pairs socks.  I also have what feels like weakness/shakiness  in my legs, but it doesnt affect my walking.  I also get weird spasms in my legs like the nerves are being stimulated and at times quite severe neuropathic pain in my leg/s which seems to follow the sciatic nerve etc.
My hands are affected too, i call it Raynaulds but it may be peripheral neuropathy there too, i am not sure of the difference. My finger tips go reddish purple and wrinkled in the cold or if i handle food from the fridge.
Although i have had dry eyes for many years, it has now started to affect my mouth, mainly at night where it wakes me up it is so un naturally dry.I think unless someone has experienced this  they have no idea of how awful that is, and i feel for those that have it in the day too.  My blood tests were all normal, were yours?
My whole presentation has been clouded by vertigo BPPV , and because it all happened at once hard to know whats going on.
Do you get pain or weakness with your neuropathy?  and when you say progressing how does that effect you , if its ok to ask.
All the best Paul

[arnie]

Hi Paul

I don't get cold feet, but my hands are very temperature sensitive. Also react to changes in barometric pressure.
I don't have dry mouth or eyes, which puts me in the minority group for SJS.
Nothing was found in my blood tests or any of the other tests until the lip biopsy.
I don't have any pain if I keep on the move.
If I'm sitting or standing too long, my lower legs start to ache & the feet can cramp.
I was told by a Neurologist very early in the piece, if I didn't exercise the effected areas, the muscles would waste rapidly.
I have noticed my wrists & finger strength weakening, even though I am exercising them regularly.
There is no colour change in the hands. They are just wrinkled like being in water for a long period.
Regarding the progression, in the hands for example.
Started in the little fingers & then gradually took over the whole hands.
I take a Amatriptaline every night. It does seem to help me sleep.

[Jasper]

Welcome to the forum.

I have peripheral neuropathy (caused by Sjogren's). I also have a host of other symptoms of Sjogren's. So I don't just have the neuropathy. However, I have read that Sjogren's often presents with peripheral neuropathy as its first symptom.

Here are a couple of links to good articles by Julius Birnbaum, a Rheumatologist and a Neurologist at Johns Hopkins.

http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/

http://www.sjogrensforum.com/from-the-doctor/neuropathy-in-sjs-review-by-julius-birnbaum-2010/

And this link includes a video of Dr. Birnbaum discussing Sjogren's Neuropathy.

http://emilyadneyblog.com/tag/dr-julius-birnbaum/

[Carolina]

I have profound peripheral neuropathy and can walk only with great effort and very unsteadily.  My Sjogren's symptoms developed in 2002, and several conditions appeared in the next 8 years, so many I was overwhelmed.  The culminating horror was the diagnosis of profound PN in 2010.  After that I developed small fiber neuropathy in my hands arms, fingers, face lips and tongue. 

In 2011 the underlying Immune Disorder was identified, Primary Immune Deficiency Disorder.  And I have IVIG to manage that.

I have read that neurological disorders are often the first sign of Sjogren's.   In your case I hope it is the only thing you develop.

Hugs, Elaine

[arnie]

Thank you Jasper for the links & Carolina for your kind words.

[arnie]

Just an update.
Three years since last post.
I'm still hanging in there.
No major changes.

[Carolina]

Dear arnie,

So good to know that you are 'steady as she goes'.....I know it seems strange, when you already have so much that is difficult.  But staying in the same place is very good.

Since I last posted on this topic, I have been treated for diagnosed neuropathies in my gastro-intestinal system.  I am always shocked when there is progression in my neuropathy because I, like you, am already dealing with more than I ever imagined possible. 

I am now 76, I hope that perhaps I've reached a plateau....but I'm tracking symptoms and events in my  health so I can identify anything new.

It is truly 'ALWAYS SOMETHING!'

Regards, Elaine

[arnie]

Hi Elaine

Nice to hear from you.
Yes I seem to have reached a plateau.
Saw my Neurologist last week, down to anual visits now.
Got Winter coming on here in NZ.
Cold hands starting already, I'll be sitting on them again soon.
Still getting out on the mountain bike every second day to keep the legs working.

Arnie