Doc says it could all be something else

[Lucylocket]

Hi all

I have finally had a follow up with my rheumy (6 months late) I had a huge list of things that have changed, got worse or developed since my last appointment 10 months ago.

He is very nice and kind but other than glands and dryness problems he thinks everything else could just be coincidence....and won't look at it. He said sjorgrens shouldn't affect the immune system...a few of the things I asked about

include photosensitivity (I develop a purple& pimply rash across my cheeks if I go outside) feel dizzy/sick/disorientated and fall over...

Bowel pain/changes/discomfort - constant bloatedness

Bad hip pain

Trigemenal neurolgia

Tremors in hands

Bad memory problems/brain fog/incapable of logical thinking

Quite severe mood swings

Getting constant infections - which don't heal for ages and knock me for six

There were more on the list but he said they were related to sjorgrens

I feel as if I am going mad, I wasn't like this 4 years ago, they are all new or worsening problems and I did not have any before I started getting ill......

Anyone else had this? I m not due back for 8 months again but have been referred for another glands scan, eye specialist, skin specialist, pain specialist & a couple new meds to try for dryness- so he is looking at what he classes as sjorgrens problems.

L x

[Ripvanann]

What do mean by "thinks it's just a coincidence? " As in he doesn't think it is SjS related, doesn't think you need meds for AI, you don't have another AI? Soinds as though you have Lupus maybe. What does the rash look like?

You know, sometimes nice is okay, but you need to push the issue when they are not responding.  Send him 7nfo from credited medical sources. Docs really do appreciate that stuff. When they don't,  you don't want them anyway.  You ha e a lot of bad symptoms of seroius AI. You need treared accordingly.  You are going way too long between appts.

Grace and peace.

~Andrea

[Caracol]

Hi all

I have finally had a follow up with my rheumy (6 months late) I had a huge list of things that have changed, got worse or developed since my last appointment 10 months ago.

He is very nice and kind but other than glands and dryness problems he thinks everything else could just be coincidence....and won't look at it. He said sjorgrens shouldn't affect the immune system...a few of the things I asked about

include photosensitivity (I develop a purple& pimply rash across my cheeks if I go outside) feel dizzy/sick/disorientated and fall over...

Bowel pain/changes/discomfort - constant bloatedness

Bad hip pain

Trigemenal neurolgia

Tremors in hands

Bad memory problems/brain fog/incapable of logical thinking

Quite severe mood swings

Getting constant infections - which don't heal for ages and knock me for six

There were more on the list but he said they were related to sjorgrens

I feel as if I am going mad, I wasn't like this 4 years ago, they are all new or worsening problems and I did not have any before I started getting ill......

Anyone else had this? I m not due back for 8 months again but have been referred for another glands scan, eye specialist, skin specialist, pain specialist & a couple new meds to try for dryness- so he is looking at what he classes as sjorgrens problems.

L x

Hi Lucy,

The tremors and trigeminal neuralgia sound like neuropathy, a common feature of Sjogrens Syndrome.

The cognitive issues such as Brain Fog and mood swings sound similar to the neuropsychiatric symptoms reported in Sjogrens Syndrome that affects the Central Nervous System. (80% of people with CNS-SS have mild-to-moderate psychiatric symptoms such as cognitive deficits and atypical mood disorders.)

The hip pain could be joint related or something else. Joint issues can happen in sarcoidosis I think and it can be misdiagnosed as Sjogrens initially. Both of these are systemic autoimmune conditions but one has more joint related issues like rheumatoid arthritis.

Photosensitivity and rash could perhaps be a mast cell issue (almost like an allergic reaction to the sun?) Check out MCAD perhaps. The bowel issues perhaps something IBD related, a similar inflammatory issue.

The constant infections sounds like a primary immune deficiency and is a common enough cause of autoimmune conditions like Sjogrens. You are lucky in the sense that if you get this diagnosed you can get IVIG treatment very easily and can treat both the autoimmune condition and the immune deficiency together.

But here comes the tricky part. Finding a good doctor sounds like it'll be hard. I'm surprised your rheumatologist ignored these symptoms. It sounds pretty obvious your neuropathy could be secondary to Sjogrens. You may even have joint involvement and a worse rheumatoid condition. You are also getting constant infections suggesting immue deficiency which could explain it all ultimately and suggest a clear treatment that insurance will cover such as IVIG. All you need is to find a better rheumatologist I think. Perhaps a neurologist?

[Sleepy In Seattle]

Yeah I agree - a lot of that sound like Lupus (my Sjs is secondary to Lupus - I also have APS and Raynauds).

You can have Lupus but not test positive in your blood work.

You have enough autoimmune disease symptoms that it seems like it would be worth ruling other stuff out (which is what they usually do before starting treatment) and then trying some baseline stuff like Plaquenil. Plaq takes 4-6 months to start working, though.

Some rheums will try you on a short (under 2-week) course of steroids to see how you respond - sometimes that helps them understand what's going on.

I don't know your whole situation, but it sounds like this doc either doesn't know what to do or is not very good at communication. Is there somebody else you could see?

In them meantime, you might try some "lifestyle changes" to see if they help. Many of us have had luck reducing some symptoms by going gluten/dairy-free and/or trying a "Paleo"-type diet (or some other thing - everybody is different!!!!). Not all of us by any means, but MANY of us seem to have food triggers that affect our autoimmune symptoms. Changing our eating habits isn't a cure, but sometimes it helps (a lot!). I'd urge you to do your own research, read the threads on this site about those things (you can use the search box in the upper right corner to search topics such as "diet"), and experiment - but please include your doctor...it's really important you work as a team.

Finding a useful diagnosis and treatment is often a long journey, and requires self-advocacy and lots of research and learning. Don't give up on yourself!!!! 

[litliwlowa]

He is very nice and kind but other than glands and dryness problems he thinks everything else could just be coincidence....and won't look at it. He said sjorgrens shouldn't affect the immune system...a few of the things I asked about

Oh it doesn't? Well aren't lymph nodes part of the immune system?

And please don't get scared at this link - just look at the conclusion of the study which specifically mentions lymph nodes (which are part of the immune system):

http://www.ncbi.nlm.nih.gov/pubmed/12886135?dopt=Abstract

So for Rheumy to conclude it doesn't affect the immune system sounds "off". AI by my understanding anyway is the immune system basically goes after our exocrine system. Antibodies are part of the immune system process, isn't it?

Now on the neurological symptoms such as tremors and such, and yes SJS can have neurological manifestations, but that would merit a consult with a neurologist. Different specialty.

I see someone mentioned lifestyle changes also. I went GF and organic on advice of my Rheumy and Endo several months ago. It has helped the gut issues, but of course can't fully resolve them as I have spine issues contributing to gut issues.

You're not going mad...may need other docs on your "team" and possibly a new rheumy as well.

[Carolina]

OMG Lucy,

Your rheumy is incompetent.  Sjogren's is an Immune Mediated Disease for pete's sake.

And all immune mediated conditions have most of your list as possible co-conditions.

Really, you need a new doctor.

Hugs,  Elaine

[finallyadx]

Unfortunately I agree with Carolina - you need a second opinion or a new rheumatologist - one who truly understands AI issues and sjogrens.  Much of your symptoms do sound like lupus but many sound like sjogrens too - they can overlap - you can have both or you could have lupus or just sjogrens and just have some other symptoms tagging along.

AI's need treatment - a baseline or a fairly simple first line of defense is plaquenil - if you are not being offered anything at all and having to wait eight months I think you said for the next appt  it is time to move on and up to someone who can help you.

So sorry you are having such difficulties in getting an actual diagnosis and some treatment options.

Please keep us posted.

Sending positive thoughts your way.

[Lucylocket]

Thank you everyone!

I ve been under this rheumatologist for 4 years and 18 months ago he told me we had to face the big possibility is it lupus (I didn't have photosensitivity/rash then) sent me for the lip biopsy just to rule out sj and it came back very positive and no mention of it since else....

The rash is purply mottled across the top my cheeks and gets wider out, I showed him photos and then it breaks out into blistery pimples that aren't like normal spots, they are raised and only on the rash area...it's pretty immediate when I go outside and can last upto a week to 2 weeks depending on my exposure (it also comes out when it's overcast if I m outside for more than about 20 mins) it feels tight as if I have spent all day in the hot sun (I really miss being able to do that) I do wear factor 50 sunblock every day, and high spfs in all my make ups and a hat if possible....

I do see a neurologist for my "other" problem which is related to pretty much all new artificial lights where I have a Hemaplegic attack, can't speak or communicate at all and it looks as if I am having a stroke (which I m not) this also started at the same time as the rest of the problems and has got worse at exactly the same rate but they say it's not related- they ve sent one letter between themselves that I know of....my gps tell me they don't know what to do with me and give me "patch up drugs" like anti nausea for the sun episodes and suggest I always carry a big black umbrella....

So basically I can't go indoors 90% of places! or outdoors for any length of time, I spend weeks in bed ill and upset-I m stumbling around looking like a drunk doing the school run if it's sunny,   I have 3 children on my own and I m only 35 and I feel constantly guilty that I have to say no to nearly everything they want to do .....

I ve tried the Paleo diet for a few weeks and I did feel a bit better in myself, but I was having 3/4 meals a day and lost half a stone in 2 weeks and I m only 81/2 stone to start with....

I think I m going to try and get another opinion if the nhs will let me, some days I feel so distraught at how bad it's got so quickly I dread what will happen in the next few years

L x

[Lucylocket]

I also have raynards too- I always forget that one...x

[Lucylocket]

Also - can infections spread from the glands? I know it sounds a little crazy but I ve had very swollen glands for about 12 weeks now, one of them feels like a goofball some days but during that time I had Tonsillitus, laryngitis, trigeminial neurolgia (I m sure the gland was pressing on the nerve, as the gland went down the constant pain reduced) and labyrinthitis during these weeks. I did ask him this and he just looked at me and made a note then asked a none related question....


L x

[Lucylocket]

Andrea

He said yes people with sjorgrens can get things like you ve described but so can anyone else, so I don't think we can consider them with this and they are probably not related...

I just felt foolish like I was wasting his time...


L x

[Tivia]

OMG Lucy,

Your rheumy is incompetent.  Sjogren's is an Immune Mediated Disease for pete's sake.

And all immune mediated conditions have most of your list as possible co-conditions.

Really, you need a new doctor.

Hugs,  Elaine

Absolutely agree, he shouldnt even practice if thats what he thinks. Its possible you have Lupus and sjs, but even sjogrens can cause photosensitive reactions by its self. 

[Lucylocket]

He specialises in Sjs too....I m just glad I m not going mad, it's sort of reassuring if you are falling apart for a reason rather than lots and lots of reasons....if that makes sense

L x

[Tivia]

He specialises in Sjs too....I m just glad I m not going mad, it's sort of reassuring if you are falling apart for a reason rather than lots and lots of reasons....if that makes sense

L x

I know, my rheumy says I have all kinds of things going on, shes fascinated with me. I like to think she is learning something too since she dont see a lot of people that have a spectrum of AI things going on

[Lucylocket]

I suppose what they have learnt from  a text book is rarely the same as reality and it's like pulling a jigsaw puzzle together and hoping to get the right picture in the end!

One of my friends told me recently I should think of myself as mysterious and interesting  rather than ill....everyone jokes about me being a vampire as I can't go out in sunlight or under lights- it's a nice take on things...I think!

L x