Does Sjogren's do this?

[orandaz]

Hello,
I didn't know which category to put these symptoms under since they touch so many.
I seem to get hypoglycemic symptoms in midmorning and early afternoon. Such as tremors, shakiness, unable to concentrate, blurry vision, excessive urination, and extreme fatigue.  I don't have these symptoms everyday, they come and go. I've tested my blood sugar at these times and it is in the normal range. The ongoing symptoms are dry eyes,mouth, sores in my mouth, sore throat, Gerd,anxiety attacks,yeast infections,weak eye muscles,, carpal tunnel syndrome, raynauld's,. Most recent and scary is headaches in combination with ear/jaw/neck/arm/shoulder pain and weakness, primarily on the left side. My short term memory has been affected, along with my speech. I'm afraid this is some type of vasculitis going on secondary to the Sjogren's. I know you all aren't doctors, but when the doctors don't help who else can you turn to?

I have a neurologist,endocrinologist,rhuematologist, ent,and soon a neuropthamalogist [due to a crowded optic nerve?].
I had my thyroid removed due to cancer.I've had a MRI of my brain,spine, and adrenal glands, all neg.
I have endometriosis,premature ovarian failure,mitral valve prolapse,hypermoblitiy,IBS,on/off anemia, and low potassium.
I have a strong genetic link to Sjogren's, my rheumy thinks I have it, but says he can't find any inflammation.

Any input at this point would help!
Thanks so much,
Susan

[navydad]

Susan,, I just got off the phone with the ENT on call,, (holiday),, I told him also of the numbness spreading my lip, jaw,, ear,, everything you have mentioned,, have you noticed any sinus drainage,, I just had sinus surgery last week,, and this ENT told me I could have some super infection,, or it ,, could be heart relaed,, no way of telling without a CT scan,, If I go back to te hospital one more time,, there going to lock me up,, ,, I dont have the dry mouth,, mine just makes lousy saliva,, and although I wasent DX;ed in the common way,, biopsy,, SS-A or SS-B,, I was told due to fibrosis on hte lip,, that I had SS,, go figure

[Seeker]

Hello Susan, to answer you question, a lot of your symptoms are associated with SjS.  But, the same symptoms can be associated with the other problems that you have.  But again, secondary SjS is associated with some of the problems also.  Does this sound contradictory?  The point is SjS is sometimes very hard to diagnosis.  Your SSA/SSB may look normal but you may still have SjS.  What doctors do mostly is look at the symptoms and other evidence like medical history, other ailments and medical tests.  Then they put on their Sherlock Holmes hat look at the evidence.  From that they make their diagnosis.  Which is usually correct.  So to make a long story short I would say SjS is part of your problem.  But your doctor need's to make the final diagnosis. 

Seeker

[Pooh]

Susan, you are quite right none of us are doctor's with the exception of Dr. B, however, if I were you I would find another rheumy that will listen.  These latest symptoms of pain on the left side, jaw/neck/shoulder/etc.  are something to be investigated.  Are you having any chest pain during these episodes?  

I wish I could help you more, but I'm not even a nurse's aide let alone a qualified nurse.  I hope someone will be able to help you.  

Welcome to Sjogren's World, I'm just sorry you had to find us becauxse of this.  

Pooh

[Reenie]

Hi Susan,

I am new to this forum as well. but lurked for a few months.  I am just wondering if the endocrinologist has tested your parathyroid hormone (PTH).  A low PTH can cause all kinds of problems with electrolytes (especially calcium and phosphorus), and could cause some of the symptoms you describe.  I only am aware of this because I have researched it, because my PTH came back low.   I too have the low potassium, GERD, diarrhea, severe fatigue, concentration problems, etc. 

Since you have had your thyroid removed, it is possible that your parathyroid glands were either removed or damaged in the surgery.  I hope that your doctors have checked your PTH?

Reenie

[Dolly Dimples]

 Hi Susan, your symptoms are way above me, but I want to welcome you to this site... You need to do as Pooh advises,  dig your toes in with these Doc's and make sure they listen ... Good Luck, Dolly

[orandaz]

wow, thanks for all the support!
Parathyroids are still there and working, Calcium is always OK in blood tests.
My mother has Sjogren's and my paternal grandmother off the boat from Sweden had Sjogren's, so most likely have it going on.
My mother also has PMR. So, I'm at risk for that, but I'm only 40, Polymyalgia rheumatica usually occurs in 50 and older.
So does hypoglycemia type symptoms happen with Sjogren's? I don't know if I should see a gasterinologist for this to see if I have a low b-12 autoimmune thing going on or my endoincrologist. I see my neurologist on Friday, but most likely he won't know anything about the digestive part. Who do I see for vasculitis problems, if it even is related.

Thanks again,
Susan

[irish]

Susan, Welcome to this site. I am somewhat confused. You are listing symptoms that you think are low blood sugar, but you say your blood sugar is normal? It might be good for you to see an endocrinologist in view of the fact that you had your thyroid removed.

With your history and symptoms it is very likely that you have sjogrens. Many rheumatolgists are treating the newly diagnosed sjoggies with plaquenil right off the bat to be proactive in reducing the inflammation. I don't know where your doc is looking for inflammation, but you don't need a positive lip biopsy or positive blood work to have sjogrens. I have had sjogrens since I was about 20 and am 65 now and just diagnosed in 2003. The very last symptom that I got was the dry eyes. All the symptoms don't come in a certain order. Many times the neurological symptoms will be the first thing to occur with other things turning up over the years.

Just don't give up and keep going to docs til you find an answer --- remember the symptoms need to be treated. Also, if you are having jaw, ear, face, shoulder pain it would be good to have heart issues ruled out. Women have such weird response to cardiac problems and their pain is often different than mens. Let us know how things are going. Irish

[Reenie]

Hi Susan,

I'm glad to hear that your parathyroids weren't inadvertantly removed in the surgery and that they're functioning properly.  My docs aren't sure why my PTH is suppressed:  I had the PTH & calcium levels retested yesterday to make sure it wasn't a lab error or a one-time fluke.

Good luck to you with you neuro appointment today.  Have you seen a rheumatologist yet?  They may be able to shed some light on the vasulitis problems.  I hope you get some answers soon!

Reenie

[Chana M]

Hi Susan

It sounds as though you've got an overwhelming mixture of symptoms, with some miserable long-standing conditions underlying them.  What a rotten time you're having, and now the exhausting round of hospital visits.  Poor old you!

I share some of your conditions - endometriosis and mitral valve prolapse (in my case caused by childhood rheumatic fever).  I came to a SjS diagnosis a very long way round, and the symptoms of dry eyes and mouth were clear but certainly weren't an issue as far as I was concerned.  I have mostly neurological symptoms which mimic multiple sclerosis, and other things - especially foul headaches and speech difficulties which seem to be caused by mini stroke-like episodes - which seem to be vasculitis-connected.

I'm finding it hard to get to the bottom of the vasculitis symptoms.  I think the neurologist-rheumatologist combination is the one which offers most hope of useful information.  It seems that whatever the underlying cause of the vasculitis they treat it with steroids and immune suppressants.  I'm not sure whether this combination treatment has actually been shown to zap the vasculitis.  I'd be interested in anything you find out.

Take care of yourself.

Chana x

[Sherry20]

I have endometriosis,premature ovarian failure,mitral valve prolapse,hypermoblitiy,IBS,on/off anemia, and low potassium.

I also have endometriosis, have low potassium on occasion and may have hypermobility (my doctor said I have very loose tendons).  My daughter can freakin' twist her legs to such a weird angle they actually look broken, so I'm sure she has hypermobility as well.  I also have hashimotos.

I experience those low blood sugar feelings as well, about 50% of the time my sugars have tested normal, but the other 50% it's actually on the low side - it's been as low as 3.4 mmol/l.  I usually get these feelings in the mid to late afternoon.  I've found that eating every 2-3 hours and NEVER eating very many carbs (like bread, sugar, icecream, etc) helps quite a bit.

But I test negative for everything, so who knows what I have.  I just know that I'm sick of all this crud.

[orandaz]

Hi all,
    Well the neurologist appt. wasn't any help today. I think this doctor is just use to handing people meds. to try, and going on to the next patient. He didn't even examine me! I asked about vasculitis and he said that it would have shown up on the MRI I had 5 months ago. Handed me a script for lyrica and amrix and referred me to a neuromuscular doctor. Of course both those meds. side effects list "dry mouth" as a possible side effect. Like i need that.

I'm glad i'm not alone with these weird low sugar type symptoms! I have to eat every 2-3 hours and try to stay away from caffeine.
I also had hashimoto's thyroiditis, but was told I didn't have it, because all my thyroid levels were always normal. It wasn't until it was removed did the pathology report state that I had chronic thyroiditis along with thyroid cancer.

My son also is double jointed or has hypermoblitiy, hopefully his heart won't be affected.

thanks,
Susan