Burning feet and cant feel the ground when walking!

[cilycoed]

I have just read the latest postings on this forum. I have been diagnosed with SJOGREN'S SYNDROME. Following two years of pamisol infusions, Intagram [not sure of that spelling, sorry] and also four months of Melphalan and Dexamethasone. I am 65 years of age, and have kept fairly good health up till the middle of 2005.

About 30 months ago, I started to have tingling in both my feet, this has deteriorated and Nerve Conduction Tests indicate that, that which was moderate is now severe. The sensation in my feet has extended to above my knees now and the tingling is a 24/7 condition which includes burning and a sort of exquisite pain in my toes. Like someone has pricked me with a needle and then twisted it, not nice at all. My hands arte also affected. the R worse than L,  I am constantantly dropping things and burning myself in the kitchen. All my blood tests are normal now, even my platelets are normal, after droppping to 42 at one stage. This is a surprise as I had extremely high Hypercalcemia, and also Paraproteins[Monoclonal Gammopathy] I think they call it Dyscrasia?? now. Not the first diagnosis which changed from Multiple Myeloma to Amyloidosis.

I am on Vit B 12 injections, [Malonic levels consistently low] Potassium, it was only a 3 this week. Frusimide. Prednisone and Razene right now, both for reaction to the Pamisol!  I've just had tests for Magnesium too. I'm low in Vit D. and have never been tested for Diabetes, though I guess there will be something show up in  my monthly Blood Tests?? I am seeing a Haematologist, Neurologist and next week a Rheumatologist. No one has yet said where this Neuropathy is connected to the SS or otherwise really.

Is there a connection with all this and Sjogrens?

I sleep well, dispite the tingling. I find that if my bed is warm at night, it helps to soothe my legs and feet. I have a good appetite and great support systems etc and a think a good attitude to all this. I know there is no cre for the SS, but is there any way of lessening the neuropathy? I am unable to walk with a walker, and am always making sure that I tranfer properly.

HELP!!
Cilycoed.

[cilycoed]

Thank you so much Hope75. I have not heard of Pamelor before. I guess it might have another name here in New Zealand. I see my haematologist next week, and will ask him about it then, perhaps it will help me. How long have you had MGUS, and is your neuropathy markedly improved?

Might I stay in touch with you?
Blessings
Cilycoed

[Hope75]

Pamelor - it is the only med that I noticed an immediate change in my neuropathy.  I think the only thing that came up strange in my bloodwork was also monoclonal gammopathy.  Interesting.  That med is an antidepressant but it works off label as a pain relief therapy - especially pain like neuropathies.  Take care