Apologies....but need to vent.......!

[Venus]

Hello everyone,

l am so sorry about having to let off some steam, but we have all been there at some stage so didnt think you would mind :-)

Well, l was told in August this year by my Neuro that l have Seronegative SjS and he told me to go away and do lots of research.....

This past week l have been very unwell with what l presume to be a 'flare' up of some sort. Feeling completely drained, nauseas, sever headache, sore eyes, joints ache etc....and have been on the sofa or in bed since last Thursday..also my hair has been coming out for the past couple of months which is very worrying for me.....This morning l dragged myself out of bed to go to the doctors, l could only get in with one l havnt seen for years and years as he was just awful!

Anyway, l told him l had recently been diagnosed with SjS and explained my symptoms and how ill l was feeling....he then looked at the computer to read my Neurologist' letter from my last visit....he then looked up at me and said that my Neuro hasnt given me a diagnosis...but he has put in the letter ' Symptoms would be most suggestive of a Subclinical diagnosis of SjS'....to which l said yes, he told me l was seronegative and he definitely said l had it!....and told me to go away and educate myself on it...

Well, this doctor just basically said to me that lots of people go through periods of hair loss in their life....'Really?' thats news to me...and that what l was explaining had nothing to do with Sjogrens???.......but just a general explaination of symptoms that could be linked to anything.....!

I am so frustrated as l feel so unwell and have come home feeling what a complete waste of my time and effort it was to go to the surgery...I am fairly new to all of this SjS despite having suffered the symptoms l am now, off and on for the past 6 years. But l am concerned as surely there is something going on with me at the moment which needs a little more interest from a GP? Or am l just being pathetic...lol!

Sorry for that, but l feel better for letting it out :-)

Venus x

[Pooh]

NO! you are not pathetic or neurotic or anything of that nature.  You should be treated for your symptoms and you should get the type of care you are entitled to.  Auugghhh!! I hate these doctors that make you feel like a head case.

Do you have a rheumatologist?  If so, please see if you can get an appointment and talk to him/her about this.  Yes, Sjs can cause hair loss, not totally, but enough to worry you if you don't know about it. 

Venus I sure hope you find someone to help you.  I don't know where you are, but I'm thinking Canada or UK.  If you are in the US then you should be able to see the doctor of your choice. 

Let us know how you make out.

Pooh

[Scottietottie]

Hi Venus 

I agree with Pooh. Find another doc! Get them to check your thyroid out too. An underactive thyroid can cause hairloss, make you feel totally miserable and can be treated!!!!

Take care - Scottie 

[Epson]

Venus,

Welcome to the new age of medicine and I can understand your need to vent, we have all gone through this at one time or another.

I have come close to biting the head off of a couple of doctors, in fact they were afraid to come back into the exam room, these were the flippant arrogant type that didn't realize that not everyone is going to put up with their BS and disrespectful ways.

The hardest part of SS is finding good doctors to treat you.  No one wants to go doctor shopping, it is expensive and time consuming, but sometimes necessary.  I have more knowledge about SS then 90% percent of doctors, that's appalling, because I am an idiot.

[JannaLee]

I agree with everyone above!

All of your symptoms are found with Sjogrens.  I have the hair loss too and it's slowly breaking my heart.

Your doc visit today is not acceptable.  It is time to insist on a specialist who knows at least as much as Epson.

Best to you!
Janna

[Patze]

Hi Venus,

I'm sorry to hear how bad you're feeling, and I too agree that a new doctor would be a better help to you than this knucklehead (gotta love some of "these" doctors  )!

Oh, I completely agree with Scottie, please see if you can see an endo as hair falling out and feeling lousy are also symptoms of low thyroid, I know because I also have a wacky thyroid.

Please keep us updated, okay?

Take care -

Patze

[Venus]

Hi everyone,

Thanks so much for your replies and support after my vent...lol!... l have calmed down now and today l actually managed to venture out and get some food as was getting very low on supplies.

l was under the care of an excellent Endochrinologist up at Oxford (UK) 4yrs ago, and did write to him a few months ago (prior to my Neuro saying SjS) and he has said he will be very happy to see me again, l just needed my GP to re-refer me. He specialises in Multiple Endochrine Neoplasia.

l didnt know that hair loss could be linked to SjS but knew it was a thyroid thing, l will see my own GP next week and get her to do some blood tests. l just got so frustrated when the other GP told me that my Neuro had written that it was a possibility l had SjS, when he catagorically told me to my face when l last saw him that l he was giving me two diagnosis'..1) Hemiplegic Migraine - 2) Seronegative SjS.
Its not as if l could make it up as l didnt know what Seronegative meant...lol! l shall be writing to him to get him to confirm what he told me.

I have been doing lots of research about it and from what l have read has confirmed (as far as l'm concerned) this latest bout of illness has been linked to SjS, as all the symptoms fit....but, unless your doctor is prepared to accept that, what are we supposed to do....heyho!....

Anyway, l shall let you know when my thyroid is checked, what the results are.....

Thanks again everyone,

Venus x

[Scottietottie]

Hi Venus 

I'd managed to miss the fact that you're in the UK. Please forgive me - my thyroid is out of whack just now and my son reckons my brain is out to lunch and is eating berries under a bush somewhere!

If you're around on Wednesday evenings at 7 p.m. UK time, SjS has a hosted chat at that time and everyone is very welcome. Chatting in real time is nice.

Take care - Scottie 

[Sjenny]

Venus:

Be sure to ask for the anti-thyroid antibodies test, it is not on the standard panel of thryoid tests, at least not in the USA.  Also, you might have them check your "free T3" level since it is much more indicative of how you feel than the standard TSH.  TSH can be in the so-called normal range and you can still feel terrible.  I hate it when docs treat the paperwork instead of the patient.

I have come close to biting the head off of a couple of doctors, in fact they were afraid to come back into the exam room, these were the flippant arrogant type that didn't realize that not everyone is going to put up with their BS and disrespectful ways.

I wish Epson could come with me to see my GP - it would be very satisfying to see that doc's head bitten off (mmmm, just like a chocolate Easter Bunny).

Sue

[Venus]

Hi Everyone...

I though l would just update you to say l had my blood test results and they are all fine, no aneamia or thyroid problems....but my hair is still falling at an alarming rate and is now about 50% thinner than it was a few weeks ago. I have a really itchy scalp at times, but sometimes it is sore...l dont have a dry scalp but my hair is now very lank and lifeless...I also have an itchy hair line all around, also a rash on my forehead.

I returned to my own GP this morning as l am very concerned as to what is going on as l feel so rough too...She wasnt very helpful and says its nothing to do with SjS?? She suggested it has to do with an allergy to shampoo or hair colour....well l have been using the same one for 10yrs or more so really cant see that to be the problem.. Also my hip and shoulder pain has flared up and very painful.

Ah well, nothing l can do apart from keep taking the pain killers...GP of no help other than to say use anti-dandruff shampoo for my scalp...Geez!! I do anyhow...ahhhh!

Have a lovely Christmas everyone and lots of luck in 2009!!.....

Keep well...

Venus x

[Scottietottie]

Hi Venus

I'm sorry you don't have any answers. It is possible to develop an allergy out of the blue even when you have used something for a long time. It sounds a bit drastic though.

Have you thought about asking a hairdresser about your hair? They could maybe suggest some hairloss reasons and suggest you hassle your doc again. Also - have you tried taking a zinc supplement. I really did find it useful stopping hair thinning.

One of the medications for SjS - Plaquenil - sometimes causes hair to thin but I wasn't aware that SjS did on its own. On the other hand - stress can trigger hairloss and then it turns into a vicious circle. Worried about hairloss = stress. Dealing with SjS and no helpful doc = stress.

Hope you can chill out over Christmas.

Take care - Scottie 

[JannaLee]

Venus,

I am experiencing almost exactly the same thing you are.  My scalp also gets smelly by the end of the day.  And it has taken me about 2 years to lose half my hair.  I absolutely hate this!

My Rheumy asked me if my hair loss has slowed since starting on Plaquenil.  He acted as if he expected it would.  It has slowed but certainly it's still falling out and it is real dry like straw. 

I think Sjogren's Syndrome and Lupus are related diseases and often overlap.  The rash and hair loss can come with Lupus, I think. (I'm not a doc)

I've been thinking of seeing a dermatologist and getting a biopsy of my scalp done to make sure it's not a fungal thing.

The stink/soreness/itch is worse if I use certain shampoos or conditioners, which would make me wonder if it is a sensitivity/allergy to an ingredient in them.

My thyroid checks out fine also.

Because your loss has been so fast and drastic, I think you MUST see another doctor about it.

Janna