Joined
·
1,471 Posts
Hi Sheer 
Everyone has given you good advice and I hope that you will take it on board and move forward with renewed strength to seek better health care.
Can I ask a few questions? Have you seen a Neurologist for the seizures and are you on medication for these? Also glossopharyngeal neuralgia can be extremely painful and is often itself treated with anti seizure medication. There are also surgical options which can be considered but you should talk about these with your specialist. Many people with glossopharyngeal neuralgia lose weight because they develop a fear of eating in case the chewing action starts the pain up again. I wonder if this might be the case with you?
Celiac disease is also an autoimmune disease and there are some members here diagnosed with both celiac and Lupus. Likewise with Raynauds.
I would very strongly suggest that you seek a referral to another Rheumatologist - preferably one who specialises in autoimmune diseases. There is a Find a Doctor Forum here and you can post and ask for any information on doctors in your general area. Alternatively you can contact the Lupus Foundation of America and they could put you in touch with their local chapter who may be able to help you out with referral advice.
Just remember Sheer, something is most definitely not right with your body. Dont be put off by doctors 'dismissing' your concerns. Keep on fighting and we will help you all we can.
In the meantime if you dont already keep a diary of your symptoms, start one today. Write everything down in it. Often things happen that we think are unrelated and we dont want to mention them in case people think we are mad. If you do have a systemic autoimmune disease, then this can cause problems anywhere in your body. Also the advice to take photos of any rashes for future reference is a good one.
Take care for now
Joan:rose:
Everyone has given you good advice and I hope that you will take it on board and move forward with renewed strength to seek better health care.
Can I ask a few questions? Have you seen a Neurologist for the seizures and are you on medication for these? Also glossopharyngeal neuralgia can be extremely painful and is often itself treated with anti seizure medication. There are also surgical options which can be considered but you should talk about these with your specialist. Many people with glossopharyngeal neuralgia lose weight because they develop a fear of eating in case the chewing action starts the pain up again. I wonder if this might be the case with you?
Celiac disease is also an autoimmune disease and there are some members here diagnosed with both celiac and Lupus. Likewise with Raynauds.
I would very strongly suggest that you seek a referral to another Rheumatologist - preferably one who specialises in autoimmune diseases. There is a Find a Doctor Forum here and you can post and ask for any information on doctors in your general area. Alternatively you can contact the Lupus Foundation of America and they could put you in touch with their local chapter who may be able to help you out with referral advice.
Just remember Sheer, something is most definitely not right with your body. Dont be put off by doctors 'dismissing' your concerns. Keep on fighting and we will help you all we can.
In the meantime if you dont already keep a diary of your symptoms, start one today. Write everything down in it. Often things happen that we think are unrelated and we dont want to mention them in case people think we are mad. If you do have a systemic autoimmune disease, then this can cause problems anywhere in your body. Also the advice to take photos of any rashes for future reference is a good one.
Take care for now
Joan:rose:
