Second day on nortriptyline

Wrong move. Now I have horrible headaches. Im going to check on the medication you mentioned. 

hi Veronica, I remember this post. I am currently still in remission 4 months after stopping interferon treatment. I am hopeful that something has changed this time. I have been treated before for shorter spells with interferon and it came back. 

I was reading recently that studies into interferon use in treating my particular condition showed that over half of those treated had gotten a long term remission. Here's hoping! 

Well the presence of ANA is a symptom of Lupus Veronica. 

Also you say your tests for auto immune were all negative. Positive ANA is a positive sign of auto immune disease. So I'm puzzled about what your doctor is telling you. Are you seeing a specialist?

Yes, Im seeing a specialist. I was tested for Lupus, MS and RA. 

Those test came back negative. Now Im scheduled for a bone scan on 2/1. 

I have tested postive for Celiac disease in the past and eat a gluten free diet. 

If you have positive ana why has Lupus been ruled out? I don't understand that. Are you seeing a rheumatologist?? 

It never ceases to amaze me what doctors are telling people. I was diagnosed with a similar disorder with unremarkable blood test results. Only have mildly raised esr and crp. The key to diagnosing these conditions is really lab work and symptoms taken into consideration together. 

People who, like you, are suffering terrible symptoms are mistakenly being told they can't have auto immune disease when in fact they do have it. 

Yes, I am seeing a Rheumatologist. I have the test from the lab that state negative to Lupus. Thats why the doctor is sending me to have a bone scan done.  What else should I request the Rheumatologist test me for ? 

I was diagnoised in October with Menieres disease, by the middle of November I was having horrible symtoms. Went to hospital on numerous occasions, because before my surgery I was fine only effected the day I have a violent episode of vertigo. Now, Im always having symtoms, 

headaches, vision distrances, pain in back of neck, tingling through out the body, numbness in face. ENT doctors states it takes a time to recover from surgery and symptoms to stop. ENT for migraines gave me nicrotryline 20 mg at bedtime. So far the headaches have stopped, and other effects. 

But every time I go to the ER I tell them there is something else wrong. 

That all my symptoms are not from my Menieres disease. Finally I was referred to Rheumatogist. He read all my back ground and took blood work and sent for testing. Test came back negative for Lupus and RA. But the ANA still come up at 116 with a speckled. So now Im going in for a bone scan. Im always tired, dont drive, and have not returned to work. 

Any advise ? 

well I am so puzzled by this Veronica I am almost tempted to say see another specialist. Where in the world are you? Are you uk based? 

If you have positive ANA then this is the test for Lupus. Not just that but other auto immune conditions so maybe not Lupus but something along those lines. I have never heard of a definite test for Lupus or any other auto immune condition. There are merely markers in the blood that flag up the possibility of ai disease. ANA is one of the most positive markers of that. 

So the area is complicated as no definitive blood test for Lupus Sjogren's Behcet's ....whatever. That is why they use these lab results in conjunction with your symptom profile to diagnose. 

The reason I ask where you are is that I would strongly advise you to contact either the Vasculitis support group in the UK or wherever you are and speak to them. I think you are being misinformed. 

If you are in the UK, I can suggest a very very good doctor to see. 

Just didnt know where to turn to. Next is the Neurologist. 

Again any advise Ill take to recover and get back to normal. 

Thank you 

Veronica, if you don't mind I want to pm you because I am finding this thread too long now to follow it well particlarly when looking on my phone. 

Im in the USA, California. Ill look into a support group near me. 

Im really worried now. 

Take a look into Menieres disease and effects to the body. 

Do you think Lupus and side effects of Menieres have the same symptoms ? 

god yes. I had all symptoms of menieres. I don't have Lupus I have to point out. I have Behcet's. But they are such similar conditions. I had menieres type symptoms for the longest time yes. 

But the good thing about auto inflammatory conditions like Lupus Behcet's Sjogren's.....the damage is not normally 'real'. It is caused by inflammation. Control that and you are winning. It can disappear with treatment. I am in remission and have zero symptoms of it. Maybe just always a little bit tired, my immune system isn't ever going to be the best but I am living a normal life. Running a business and having a social life. Don't see this as the end of your life if that is what it turns out to be. Key thing....get a diagnosis.... get treatment and get back to normal as much as you can.  Try to remember one fact, Venus Williams is diagnosed with Sjogren's Syndrome. And I know there are people out there who are suffering dreadful symptoms. But it can be so different for all of us. I am feeling so much better now that the headaches and the seasick feeling and all of that have gone. x

What did you do on a bad day ? Medication ? 

Im having a off day and getting real nervous about it.