Doc says it could all be something else

[litliwlowa]

Lucy

Please transition to a new rheumy. A good rheumy KNOWS that AI's tend to bring their uninvited friends to the party. I'm concerned, as as you can see the other responses you've received support similar concerns - time for a new rheumy.

I realize we get comfortable with a doctor we're used to seeing for a period of time and changing doctors in its own way can be traumatic so to speak.

I myself held on to a neuro for 7 years before letting him go and it was the best decision I could have made for myself. All those years and then some with an untreated seizure disorder, the neuro I changed to finally started treatment for partial complex seizures @first visit.

If nothing else, if your insurance permits it, get a second opinion rheumy consult. Please.

[Lucylocket]

I am going to ask my gp to refer me to another for a second opinion - I have a local friend with Lupus (who is convinced I have this too) so will attempt to see her rheumatologist if possible (though it took her 7 years to be diagnosed...)

There's around a 3-6 month wait bit hopefully I will get to see the skin specialist earlier and they might be able to shed done light on some or part of it


Thank you


L x

[Jasper]

"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..."
-------------------------------------------------------

Well, he may be nice, but I don't know if he knows what he is talking about. I would agree that you really need to find a new Rheumatologist who is competent and recognizes that everything on your list can be Sjogren's related.

It just does not make any sense that you have Sjogren's and yet all of those symptoms/problems are "just coincidence." Possibly 1 or 2, but all of them? I really doubt it.

My Rheumatologist takes everything I say very seriously and she thoroughly checks out any symptoms I have. That usually includes a referral to a specialist. She acknowledges that "normal" people can have some of the symptoms I have, but she does not assume that just because a few "noprmal" people have the symptoms, that my symptoms are unrelated to Sjogren's. She checks it out.

I don't have a couple of your symptoms, but I have the rest, and they are Sjogren's related:

"photosensitivity:" can occur in Sjogren's. Bright lights bother my eyes and my rashes bloom when I am in the sun.

"Bowel pain/changes/discomfort:" I don't have this but IBS and Crone's Disease and Celiac Disease are common in people with Sjogren's

"Bad hip pain:" I do have a lot of Musculo-Skeletal issues and my Rheumatologist has addressed these issues are being part of Sjogren's. Musculo-Skeletal issues are very common in Sjogrens and are Sjogren's related. Most Rheumatologists address this and offer pain medication.

"Trigemenal neurolgia:" I don't have trigeminal neuralgia but I do have Sensory Polyneuropathy/Ganglionopathy. My Rheumatologist listened to my neurological complaints and sent me to a Neurologist who specializes in neurological problems associated with Autoimmune Diseases. He diagnosed the Sensory Polyneuropathy Ganglionopathy.

"Tremors in hands:" I don't have this but it could be some form of Sjogren's related Neuropathy. You should be seen by a Neurologist who specializes in neuro problems of AI diseases to determine if your neuro issues are related to AI diseases.

"Bad memory problems/brain fog/incapable of logical thinking:" I do have brain fog and it is most likely Sjogren's related. Brain Fog is common in people with Sjogren's and is part of the central neurological problems associated with Sjogrens and AI diseases.

"Quite severe mood swings:" I have Major Depression at times. Mood swings and depression are associated with AI Diseases. This should be addressed.

"Getting constant infections - which don't heal for ages and knock me for six;" Wounds take longer to heal for me but I don't get constant infections. As someone above said, this could be a primary immune problem and should be investigated. 

Also, even if all of these symptoms are not related to Sjogren's, they could be from another AI Disease and we all know how AI Diseases love to travel in packs. So your Rheumatologist should be looking at other AI Diseases as a possible cause also.

By the way, you are not mad.

I hope you can find a new competent Rheumatologist who will look at all of your symptoms and who will recognize that AI Diseases (including Sjogren's) may be causing most or all of your problems. A visit to a Neurologist who is familiar with AI Diseases would also be beneficial.

Best of luck.

[LucyD]

Hi Lucy,
I agree with everyone else. I think you should get a new rheumatologist. For him to say that Sjogren's doesn't affect your immune system is just plain incompetent. It is almost dismissive. Where do some of these doctors come from??? And how can they still practice medicine?!?!
Everyone else said it better than I can say it - everything they wrote is correct.
Good luck.

[Lucylocket]

Thank you everyone!

Haven't been on here for awhile, my eyes are particularly sore and tremors have been so bad I couldn't type very well...

He sent a letter to my gp saying how upsetting it was seeing the decline in my health and the effect on me but that he had explained that sjorgrens is not curable or treatable and they should look at all of my medical complaint as they normally would....I m seeing the dermatologist/pain clinic/occupational therapist/eye specialist and have a gland scan over the next few weeks- also chasing up my neurologist (who doesn't specialise in ai diseases) as they forgot to give me a follow up on my last appointment.... so hopefully they will throw some light on some of the bits and then I will be back to my gp to be referred for a second opinion if I can't get a new rheumy....

L x

[irish]

Hasn't this guy been reading Womans Day or Good Housekeeping??? Many of these woman's magazines have more knowledgeable articles than what this doc seems to know??? If it was me I would ask for a second opinion. Maybe try to see an immunologist. Even a new/another internist might help.

When you go to make a new appt make sure to ask the receptionist if the doc deals with autoimmune diseases. Your doctor sounds very old and very uneducated in the realm of autoimmune diseases. It is not your fault. Most of us have one or two of these guys also. It is unbelievable that in this day and age any doctor ansd especially a rheumy can be so ill informed. It is almost criminal that the medical training is ignoring the autoimmune and immune issues that are growing by leaps and bounds.

I just read that 1 in 11 people can expect to deal with some type of autoimmune/immune issue. Too manuy chemicals, processed foods, pollution, who knows, but the problem is growing. Good luck and keep us informed. I think I would also try to get info to this doc about Sjogrens and all the other symptoms that are involved. You could even be a lupus because of the facial rash. It takes time to pull everything together diagnosis wise,e but at least if you have a doctor who ttys life is less complications. Irish

[warmwaters]

A suggestion about the rashes. Google "lupus rash" or "lupus butterfly rash".  What I see seems similar to what you are describing. See if that's the case.  Just because you have Sjogren's doesn't mean you can't also have lupus (or several other AI diseases).

I feel that you probably need to find another rheumy, or at least get this one to treat you, if for some reason you can not change easily.

Use the sjogrens.org site as a resource for information for your doctor. And ask, well, if these issues aren't related to my sjogren's, I still need to be treated for them. Can you help me come up with a plan of action? (Or perhaps work with your GP on the same topic, if your rheumy is not helpful.)

You are not mad... Many of us have had infuriating interactions with our doctors. My favorite was with a really "big deal" in the medical community who basically told me he couldn't do anything for me beyond what I was already taking, and that I should be glad I don't have a serious disease like lupus.  This was after I'd been fully disabled for several years. Oh, yeah, glad I don't have a serious disease!  ;-)

It's hard to learn to deal with doctors, but it's a skill many of us are learning.

[cccourt1942]

Didn't we already decide this guy is incompetent, misinformed, and just plain WRONG??

[Lucylocket]

We have - a kind hearted doc who doesn't know enough....or is wearing blinkers just for what he thinks is sj

The mad thing is he thought it was lupus for years - if I d had the rash (which looks exactly like the lupus rashes on google) then I would have been diagnosed, he only did the lip biopsy to rule out sj's as to be honest I might wake up not being able to breath because my mouth is totally dry and my eyes feel as if they are slowly burning - but they certainly aren't the worst symptoms!

I think my neurological conditions have complicated things and confused everyone - but I live in hope of someone one day making sense of what's happening to me!!

I will let you all know after my load of consultant appointments have happened

And thank you for your support!!