Next Steps

[hopeforall]

I know many of you might have been in a similar situation before.
Before April 2016, I was completely healthy. Starting April 2016, I have been having Blepharitis due to MGD, mild feeling of dry mouth, difficulty swallowing, occasional numbness in hands/feet, occasional mild arthralgia.
Starting last week, I have very frequent numbness/weakness/pain in my hands/feet.

Tests:
a) All the blood tests (ANA, SSA, SSB, CRP, ESR, RF) have been negative so far (Once in April, once in August).
b) Schirmer score was good as my dry eye is due to MGD.
c) Salivary flow test score was good (though the mouth feel drier than pre-April). And since the saliva level is good, the docs think it is highly unlikely that I will have a positive lip biopsy.
Because of this, none of the docs saw any objective reason to diagnose this as Sjogren's.


1) Is there any way to identify whether an autoimmune process is going on in the body apart from the blood tests above?
2) Are there other autoimmune diseases which could cause similar problems? (MGD/Neuropathy/etc)
3) Any viral/bacterial infections which can cause similar problems?
4) The frequent neuropathy in hands/feet started last week and am very worried about this in particular. Are there specific diagnostic tests/treatment options I should check if I get to meet a Neurologist?
5) Any particular specialists who might be able to help with the diagnosis? (My symptoms started immediately after I took Acyclovir for a sore in the mouth in April)

I came out of the USA to try a change of environment for 3 months..so I might need to wait till November before I can meet docs at my regular hospital again -.- Hoping the symptoms don't get worse.

[Linda196]

Acyclovir is a potent antiviral, and not a common choice for "sore throat" unless it was caused by cytomegalovirus, and even then it's usually not treated unless it results in a life threatening co-morbidity like pericarditis. Recovery time for CMV can be weeks to months, and may cause some of the symptoms you've listed.

To attempt to answer your questions:

1/ The only tests which you appear to have not been given so far, would be a biopsy, or a quantifiable Immunoglobulin study, which would evaluate the numbers of the four main immunoglobulins (IgG, IgA, IgM, and IgE) and their subgroups.

2/ Many of the autoimmune diseases can cause similar if not identical symptoms, which is what makes it so difficult to achieve a final diagnosis

3/ It's not uncommon to have resulting neuralgia or arthralgia from many infections, especially virals. The CMV I mentioned earlier can actually result in Guillian-Barre syndrome, combining severe arthralgia and neuropathy.

4/ There specific tests for neuropathy, dependant on the type. Most neurologists start with mapping, checking the sensory reaction of different areas to see if the numbness conforms to dermotome (specific areas serviced by particular nerve groups); then progressing to a nerve conduction test, applying electrodes to the proximal muscles of the arms and legs and looking for a recordable electrical reaction in the distal muscles. Small fiber neuropathy, however, cannot be diagnosed this way and requires skin biopsy, at multiple specific sites, to diagnose.

5/ Although not listed in the possible side effect, people taking acyclovir have reported neuropathy following the treatment, although given the usual illness treated with the drug (shingles, herpes and chickenpox) and the fact that they can cause "residual neuropathy" the actual cause of the nerve problem is unclear.

[Sharon]

Treatment-wise what has helped me with the symptoms you mentioned have been:

Ubiquinol - for dry mouth
Vitamin D3- for pain and neurological issues

These have really done the trick for me and have been more helpful than any medication.

[Wal]

Your issues are similar to mine. I've got mild to moderate dry mouth, dry eyes and a history of neuralgia though that's been gone for the last year. Dry eyes and mouth and nose started in January negative blood work, saliva levels mildly low and I have MGD with normal Schirmers. My dry eyes wax and wane throughout the day. I do think warm compresses from my dry eye gel pack works fairly well plus massaging the lids afterwards. They still feel like crud often though. Xylimelts and small frequent meals to stimulate saliva helps with dry mouth plus I take Ubiniquol. I'm seeing a rheumatologist in October. I would recommend you pursue an appt with one for further insight.

[hopeforall]

Thank you Linda. I will try to get the Immunoglobulin levels checked sometime.
I was prescribed the Acyclovir for a suspected cold sore and had to stop it after the side effects. Never got cold sores after that but developed all other symptoms.
I recently got to talk to another person who had similar Neuropathic symptoms after getting infected by HSV 1.
His theory was that in some people, the HSV 1(which resides in the nerves) causes the immune system to mount an attack leading to Small Fiber Neuropathy and Dysautonomia while preventing the cold sores.
In that case, it is not autoimmune but would resolve if the underlying cause (HSV1) was suppressed (either automatically as the immune system adapts or if a therapeutic vaccine is developed)
Does this make sense?
I am planning to meet a Neurologist sometime to assess the state of the neuropathy.

@Sharon:
Thank you. I have been taking Vit D (2000 IU) and getting 10-15 mins of sunlight based on doc's recommendation.

@Wal:
I have met multiple Rheumatologists. Since I am seronegative and do not have aqueous tear deficiency/severe dry mouth, the Rheumatologists completely ruled out Sjogren's.
The Neuropathy issues are troubling me the most now and am hoping to get some clarity on that when i meet a Neurologist.

[Wal]

Oh, ok. Didn't know you had seen a rheum yet. I took and still am taking magnesium at night. I started it when the neurological Parathesia issues came back last fall and it helped me sleep through them. I still take it and love it.

[Linda196]

Oops, sorry, somehow I've managed to read and reread your post, each time inserting "throat" after "sore", possibly because I have one just now but more likely because i envisioned it that way the first time I read it, and it has stayed like that in my mind ever since! LOL The tricks a foggy brain can play!

Neuropathy following any HSV virus would make a lot of sense, since, as you stated, the virus resides in nerve tissue, and as I mentioned both it's effects, and the effects of agents to treat it, can have long lasting residual effects.