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Old 07-27-2016, 06:26 AM #1
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Default Specific Nucleolar Pattern ANA and raised C3 - what autoimmune type of NLD SFN?

I have to wait until the 19th to get the results of my lip biopsy - looking for Sjogren's as a cause of my very widespread small fibre neuropathy. In a quest for more info about the pattern of my newly positive ANA I asked my GP yesterday to tell me what it was. She said that it was neither homogeneous moe speckled (as Enbloc and Kiwi both asked) but has a nucleolar pattern only with raised levels of compliment. Can anyone tell me what this might indicate and explain how this might relate to my SFN if it turns out not to be Sjogren's?
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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Old 07-27-2016, 07:27 AM #2
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Mat, often a nucleolar ANA staining pattern is indicative of scleroderma, which is a complicated autoimmune disease. There is some general information about it here Overview - Scleroderma - Mayo Clinic.

Often but not always unusually low (not high) levels of complement protein C3 are associated with autoimmune diseases. Maybe check this with the lab which did the analysis - mistakes have been known to happen.
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Old 07-27-2016, 08:43 AM #3
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Mat, often a nucleolar ANA staining pattern is indicative of scleroderma, which is a complicated autoimmune disease. There is some general information about it here Overview - Scleroderma - Mayo Clinic.

Often but not always unusually low (not high) levels of complement protein C3 are associated with autoimmune diseases. Maybe check this with the lab which did the analysis - mistakes have been known to happen.
Thanks Kiwi. Yes the GP mentioned Scleroderma. I am just worried that they will decide that the SFN isn't related to my high inflammation levels and I'll be left with systemic treatments only. Waiting for results is so hard. Not a very patient patient me! Re compliment levels - I think raised levels just indicate same thing as CRP which is also raised in my case - acute phase of inflammation. My RBCs are also raised which worried me intol GP said its not high enough to be of concern and is probably just me!
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Old 07-27-2016, 09:53 AM #4
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MAT,

I posted the different patterns when your ANA first became positive. And yes, Nucleolar is associated with Scleroderma...but also polymyositis.

I do actually know someone from Sjogren's World forum that had both Scleroderma and Sjogren's. He no longer posts there, but he tested positive with lip biopsy and all the scleroderma tests. The most common symptom of scleroderma is the thickening of skin.

You have never mentioned any skin thickening. Is this an issue for you? What about muscle weakness??

Here is a Wiki post on Polymyositis. See if anything rings a bell for you.

Polymyositis - Wikipedia, the free encyclopedia
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Old 07-27-2016, 10:16 AM #5
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MAT,

I posted the different patterns when your ANA first became positive. And yes, Nucleolar is associated with Scleroderma...but also polymyositis.

I do actually know someone from Sjogren's World forum that had both Scleroderma and Sjogren's. He no longer posts there, but he tested positive with lip biopsy and all the scleroderma tests. The most common symptom of scleroderma is the thickening of skin.

You have never mentioned any skin thickening. Is this an issue for you? What about muscle weakness??

Here is a Wiki post on Polymyositis. See if anything rings a bell for you.

Polymyositis - Wikipedia, the free encyclopedia
Thanks for this Enbloc. I find it very hard to say about whether or not my skin is thickening.

I've had a lifetime of eczema which has been replaced by the SFN now so my sensations are skewed and some of my skin seems thin, rather than hard or thick, from prolonged topical steroid use. My toes do have small hard patches on the joints under my nails and this has baffled me. They feel very dry and as if they have shrunk or lost padding and are affected by Raynaud's in the winter months.

My hands are tight and I can't grip or clench well - the knuckles seem hard and raised in places and I can't shift the duvet or pillows in the early hours for sharp pain and stiffness. I thought this was RA but I have no heat or soft swelling - just very puffy and tight. My finger nails and toenails have strange pink halos that are telangisasias I've worked out - also on my finger tips and palms and a few dotted around my face. I have tendonitis and my limbs feel very weak at night - I have to rest them on soft pillows. Not sure any of this tarries too much as could just be arthritis and wear and tear ageing. My mouth is the worst affected part with burning lips and gums and this often intolerable tightness between my top gum and my nose rather than lips

Pins and needles raging in my finger tips give small electric shock sensations when I type. But I think it's my feet and legs that feel as if they are turning to stone all the time.

Will look at polymyositis link - haven't thought of this at all. I don't think it's my muscles that are wasting though - it feels like it's my tendons and my bones and my nerves? Can't really explain but hoping you get the gist. Mat x
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases

Last edited by MAT52; 07-27-2016 at 01:51 PM.
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Old 07-27-2016, 01:50 PM #6
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Quote:
Originally Posted by en bloc View Post
MAT,

I posted the different patterns when your ANA first became positive. And yes, Nucleolar is associated with Scleroderma...but also polymyositis.

I do actually know someone from Sjogren's World forum that had both Scleroderma and Sjogren's. He no longer posts there, but he tested positive with lip biopsy and all the scleroderma tests. The most common symptom of scleroderma is the thickening of skin.

You have never mentioned any skin thickening. Is this an issue for you? What about muscle weakness??

Here is a Wiki post on Polymyositis. See if anything rings a bell for you.

Polymyositis - Wikipedia, the free encyclopedia
Just checked out your Polymyositis link. I don't think so but I might have the slower onset one. I do find it almost impossible to rise from sitting position often and have many of the symptoms but not the associated problems in neck and shoulders. And nowhere does it mention peripheral neuropathy - my most problematic symtom. Thanks though - very interesting to learn about it and not ruling it out yet!
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Old 07-28-2016, 02:26 PM #7
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Hi Mat

It's good to read you're making some headway towards a diagnosis. Don't be concerned about there being no mention of PN in relation to Polymyositis - it's not unknown for PN to develop secondary to autoimmune disorders but it's seldom mentioned in literature or discussed by doctors, (except maybe in the case of Diabetes). This may be due to the fact that Neuropathy is classed as a neurological disorder and autoimmune diseases come under rheumatological, endocrine or immunological (or other) classifications and due to specialization the cross connections are missed.

I don't know if you have access to a Neuroendocrinologist in Scotland but this is a developing area of specialization that may help pinpoint a diagnosis. Unfortunately here in NZ Neuroendocrinologist's tend to be found mainly in the research labs (rather than clinical settings).

All the best for your continued search.

Thanks kiwi and enbloc for posting some info and explanations re possible alternative diagnosis which may be interesting for others searching.
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Old 07-28-2016, 02:44 PM #8
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Hi Mat

It's good to read you're making some headway towards a diagnosis. Don't be concerned about there being no mention of PN in relation to Polymyositis - it's not unknown for PN to develop secondary to autoimmune disorders but it's seldom mentioned in literature or discussed by doctors, (except maybe in the case of Diabetes). This may be due to the fact that Neuropathy is classed as a neurological disorder and autoimmune diseases come under rheumatological, endocrine or immunological (or other) classifications and due to specialization the cross connections are missed.

I don't know if you have access to a Neuroendocrinologist in Scotland but this is a developing area of specialization that may help pinpoint a diagnosis. Unfortunately here in NZ Neuroendocrinologist's tend to be found mainly in the research labs (rather than clinical settings).

All the best for your continued search.

Thanks kiwi and enbloc for posting some info and explanations re possible alternative diagnosis which may be interesting for others searching.
You are all so knowledgeable and it really helps me comimg here always Bluesfan.

Having read up some more I'm thinking that I may have diffuse systemic scleroderma -.which also can cause small fibre neuropathy as part of secondary Sjogrens - or both diseases overlapping sometimes. My symptoms arrived together five years ago quite aggressively with mild Raynauds which corresponded with flares. I think CREST usually occurs in people who have had Raynauds for years but I didn't and so I think mine was one of the other kinds.

I think it would explain my hypertension, longstanding GORD and swallowing problems, and early stage atherosclerosis and the constipation and persistent yeast infection plus dryness and scarring below. Perhaps also the extra large kidney cyst and microscopic haematuria. Not sure I relate so much to polymyositis but we will see.

I am seeing an NHS endocrinologist the day after I see the rheumatologist next month. My friend sees him for her Addison's and I was referred to him by my GP for my Hashimoto's hypothyroidism. My friend thinks he's great. Perhaps I may just have the rediagnosis when I see him - in which case he might be helpful about more than treating my thyroid. If not I'm going to make a concerted effort to get the SFN investigated properly and will ask about him about neuroendocrinology. The reason I sought the input of an endo privately is because of the SFN.

I think (my son is in NZ presently) that Scotland and your country have lots in common. X
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Old 07-28-2016, 03:06 PM #9
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Hi Mat

It's good to read you're making some headway towards a diagnosis. Don't be concerned about there being no mention of PN in relation to Polymyositis - it's not unknown for PN to develop secondary to autoimmune disorders but it's seldom mentioned in literature or discussed by doctors, (except maybe in the case of Diabetes). This may be due to the fact that Neuropathy is classed as a neurological disorder and autoimmune diseases come under rheumatological, endocrine or immunological (or other) classifications and due to specialization the cross connections are missed.

I don't know if you have access to a Neuroendocrinologist in Scotland but this is a developing area of specialization that may help pinpoint a diagnosis. Unfortunately here in NZ Neuroendocrinologist's tend to be found mainly in the research labs (rather than clinical settings).

All the best for your continued search.

Thanks kiwi and enbloc for posting some info and explanations re possible alternative diagnosis which may be interesting for others searching.
PS - the reason I don't think I have polymyositis is because most of my pain is in my tendons and joints rather than muscles. Also it all started in my hands and feet and PM usually affects the shoulders, hips and not the hands, knees or ankles or toes like mine. I do have trouble going from sitting to standing sometimes (can't!) but I had a pelvic X-ray recently which showed arthritis in my hips and lower back and this would explain.
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