Should I see a immunologist and neurologist privately as my dr is refusing to send me to one.

Am really struggling to cope on a daily basis with a very long list of symptoms of which the list lately is just simply never ending the latest is severe toothache, which is possibly an abscess as my face feels swollen so off to the drs and the dentist in the morning, horrible taste in my mouth, chest pain, shortness of breath, very bad fluid retention and multiple food and drug intolerances so cannot take any tablets. Am allergic to penicillin and antibiotics and the last lot I took caused my lips to swell felt so unwell had breathing issues and a rash. When I eat I blow up like a whale and have to go to bed as I go red in the face and neck, start sweating with my heart racing like crazy which leaves me completely fatigued. Tingling and numbness in hands and feet are a concern which is now a daily occurrence on top of my what I just call my normal symptoms. It’s simply exhausting and I rarely go now to the drs and I just plod on myself. I already have a diagnosis for reynauds, CFS, Fibromyalgia, Gerd, dizzy spells, endometriosis, polyps, asthma, fibroids and cysts, migraines etc. I am having problems with my gallbladder which they refuse to remove. I am currently seeing a rheumatologist who after almost a year and a half still can’t diagnose even after a daily symptoms diary and 2 positive ENA blood tests, I suspect Sjögrens. A headache Dr and after 5 years is completely clueless about the severity of my headache symptoms I have seen three different dieticians over the last 10 years the first one said I can eat whatever I wanted as she didn’t believe that it was food making me ill and she felt I didn’t have any allergies, the second one could only give me fodmap leaflets and third one was the same woman I saw at another hospital who told me just eat what you can and leave what you can’t then discharged me. My own drs told me I had a bladder and bowel prolapse which had got worse and sent me to see a gynaecologist who said it wasn’t so am stumped. I see her next week for an update and results after having surgery. have had 3 biopsies which was breast, bladder and womb all which were fine within the the last 6 months and still no answers. I have asked to see another rheumatologist which has got me nowhere and am just so sleep deprived and I am just about to make an appointment with the sleep clinic as I may have sleep apnea as i can’t sleep and have terrible insomnia. To top it al off I am struggling with the menapause I just feel a complete wreck and am sick of how slow everyone I see is and the battle I have to get help. Just finished treatment for a frozen shoulder with the physio therapist and the problems with my joints and bones are terrible. I now can’t walk far and now having issues with my hips. Once I used to get upset now I just shrug my shoulders and laugh. I am getting used to treating myself and am trying anything and everything that’s herbal or natural but still I have the symptoms. The last dr I saw just tells me we need to concentrate on one symptom or condition at a time which is no help to me when I literally have hundreds of daily symptoms and have multiple conditions to deal with. Any advice as I now recognise I need to do something as I am struggling with severe sore throats and problems with swallowing and swollen glands. Am getting so unwell and drs and specialists seem unable to help. What do I do and who out there can help me. I did ask my dr if I can be referred to guys hospital or a tertiary care unit as they deal with lots of conditions or to see another rheumatologist which still hasn’t been addressed. They have all my medical history and countless specialists appointments are it’s getting me nowhere. Do I go abroad or is there someone out there who can finally get to the bottom of what’s truly wrong with me. Thank you for anyone who can advise. 😀

[Roarah]

I am sorry you are dealing with so much. I can not advise any medications specifically that might help all or any your symptoms but I can tell you that being so ill can cause post traumatic stress which can make everything feel ten times worse. This happened to me after I had a stroke.

Seeing a psychiatrist to treat my PTSD and illness anxiety has helped lessen my daily struggles greatly. I have severe post stroke pain that I can not treat with pain meds or ssri's due to the many blood thinners I am on. ACT, acceptance and commitment therapy, has made it possible for me to enjoy my life again inspite of this great pain.

Sadly, sometimes there are not sufficent treatments for our ailments but there are ways to help you accept and persevere none the less. And for me this is achieved with a therapist. It might be something for you to try whilst you are waiting for answers and treatment options.

I hope you find solace soon. Xo

[NeuronerdDoaty in reply to Roarah]

I agree. Therapy definitely helps me with my disintegrating body. I highly recommend it along with Roarah.

[Hidden in reply to Roarah]

Thank you so much for your reply and am glad seeing a psychiatrist has helped you with your PTSD and yes I think that could be an issue with me too so that’s a great idea. Since I hit the menopause I am battling severe depression and anxiety and have had several panic attack’s which may be why I feel so much worse. Seeing someone to talk to will definitely help so I will try it. At least the drs will get me to a psychiatrist. Thank you and have a great week. 😀

[Roarah in reply to Hidden]

I have a long history of anxiety prior to my lupus. I think with a history of anxiety we are more prone to PTSD. There is a lot of correlation between inflammation, PTSD and autoimmune disease. Wether anxiety can cause disease or disease cause anxiety is not fully known yet but treating anxiety is proven to lessen flares length and recurrence. Perimenapausal women's hormones are so whacky so checking thyroid function and for metabolic syndrome. Often waisted line visceral fat happens to many during menapause which is a major cause of METs.

Good luck and I hope feel better soon. Xo

[Hidden in reply to Roarah]

Thank you as I didn’t know there could be a link. Will do some research as have never heard of metabolic syndrome or what METs is. Would feel so much better if I can just get rid of the spare tyres around my waist. I can’t understand it as barely eat yet am piling the weight on and struggling with so much water retention especially in my tummy. Will laugh about it when they find out what is really wrong with me. thanks again for the advice. Enjoy your day. 😀

[NeuronerdDoaty]

I was heading for endocrinology when you said menopause. I personally would start there. Maybe your ob/gyn is capable of the referral and the beginning blood work.

Then I’d discuss migraine syndrome. It’s not just a headache. But that too could be a part of the endocrine issue which if you were my sister I’d have you in ASAP.

[Hidden in reply to NeuronerdDoaty]

Thank you for your quick reply and advice I will definitely look at seeing an endocrinology specialist private and will definitely look up migraine syndrome as all my symptoms started before the menopause and now I am in the menopause completely it’s gone into hyperdrive. Have a great week. 😀

[KayHimm in reply to NeuronerdDoaty]

Is migraine syndrome the same as migraine variant? I had all sorts of weird symptoms that a neurologist finally attributed to migraine variant — may be caused by my low positive anti-cardiolipin antibodies. I rarely get a headache. People are not aware that migraine has other features. I do better on medications.

Xk

[NeuronerdDoaty in reply to KayHimm]

Yes some doctors say variant.

[KayHimm in reply to NeuronerdDoaty]

Thanks. K