So confused seeking advice

[SjoGirl]

Hi,

My nose looks like I'm diseased with red bumps. I have developed petechia on my lower legs, the ringing in my ears is going to drive me mad, the palms of my hands, particularly the right, look like they have spider webs on them and my fingers feel swollen. My BP is low, 98/58, this is not the first time but it's a new symptom.

My PCP tried doxycycline for my nose but that did not work. When I saw her this week for a pap smear she said she is sure this is autoimmune. That said I need to wait to see my rheumatologist in April for some testing and a hoped-for diagnosis. Until then I'm searching to figure out what might be going on now. Any idea anyone?

SjoGirl.

[Maria3667]

Hi Sjogirl,

Sorry to learn of your predicament.

As you know I'm also seronegative for Sjogren's but have all the nasty symptoms anyway. I've noticed the ringing in my ears gets worse if the dosage of certain hormones like estriol (not estrADiol) and Dhea are too low. The estriol creme is prescribed to me for vaginal lubrication but coincidentally also increases eye moisture (!).

You could try approx 2.000 mg of vitamine C for the swollen fingers as it may help decrease fluid retention.

Good luck!

[meirish]

I would make sure to have a lot of testing for some unusual autoimmune issues. Also, have your adrenal glands checked was they can cause some issues with the low blood pressure and skin issues. You have an interesting complex of symptoms and there are a lot of autoimmune issues that one doesn't hear much about on this site. This is just my own personal thoughts on the subject. Good luck. meirish

[SjoGirl]

Hi,

Thanks. I can try Vitamin C. I also have classic SJS symptoms like dry mouth and eyes, it's almost as bad as when I first became ill nearly 14 years ago.

Gald to hear about the cream as my PCP recently ordered an estrogen ring. If insurance will pay for it I'll be curious to see if it has widespread effects.

My rheumatologist is going to test for myositis. I have a positive SSa but she said it's not that high (although another rheumatologist told me the range does not matter). Other than that and a low WBC and high MPV none of the typical tests like ANA and other CBC are out of whack.

I saw my PCP the other day, she's sure it's autoimmune but is deferring to the rheumatologist for testing and a diagnosis. If that does not prove helpful I'm off to see a hematologist.

Thanks again. My frustration level is rising because my hands are so bad at times I want to cry. I believe this is autoimmune but this rheumatolgist is far less likely to provide meds than my last one.

[meirish]

Have you considered finding an immunologist? These docs are very educated in doing blood testing for a whole bunch of autoimmune diseases. They also treat allergies. Some of the immunologists prefer to deal with just the allergies and some really like the challenge of the autoimmune. Also, hematologists are blood specialists and they do a lot of testing also and can be very helpful.

The goal is to find out what is going on with our body and to get treatment that is available. There are some doctors that don't keep up with all the new medications that are out there now for the autoimmune diseases. Also, a whole lot of the time how high our blood level is doesn't indicate how bad our disease is.

There have been people with positive blood work for Sjogrens that have no symptoms and then there are just so many people who have negative blood work and do have the condition. The doctors who think you don't have autoimmune if you have negative blood work should probably get some more education. Also, we can be tested and be negative and maybe if we got tested again in a couple weeks we might be positive. Our blood levels can go up and down or convert from negative to positive or vice versa. My immunologist also told me that if I even tested negative again for my Sjogrens blood work(as I did for some years see and seeing a different doctor) that did not mean that I had gotten over the Sjogrens.

There are so many symptoms that can go with the Sjogrens and so many organs of the body can be affected so we need to pay attention to our symptoms and make sure the doctors do also. Good luck. meirish

[Scottietottie]

Hi 

For those with ringing in the ears ... are you on Plaquenil? I had to come off it after six years because it caused me to have tinnitus. My GP said Plaquenil did not cause tinnitus - so did an ENT consultant and so did my rheumatologist . I had to show them the leaflet that comes in the box with the pills. Listed in possible side effects - is tinnitus. (Ringing in the ears - in my case twas more like permanent white noise.

It has not totally gone away but it is infinitely better than it was.

Just a thought.

Take care - Scottie 

[SjoGirl]

Hi all, thanks so much. I've seen hematologists in the past and had an excellent one but none of them stay in our small community for very long. I have never seen an immunologist though it was recommended at one point.

I'm going to wait to have the bloodwork done to see if I have myositis then determine what next. My PCP and I agreed that would be to see a new hematologist who just arrived in town.

I also see my dentist this week and am going to be very interested to hear what he thinks about my mouth dryness. I've seen him for quite a while and when I've been on and off of meds making him a very good judge of the situation.

I'm not on any autoimmune meds right now because I seemed to be in remission. I think it's been too long since I've been on something and that things are slowly but surely returning.

Thanks again all, this group is marvelous!