I was given meds for this in 2018 neuropathy but came off it because it was bad. I am going to see if I can find a immune specialist tomorrow, Praying that I feel better in the morning. My body hurt today

Hi Rose, if you go to the hospital ER, they would refer you to an immunologist/ immunology clinic. Just show them all of your blood tests, and show a list of your symptoms and tell them what organs are involved (e.g brain, heart, lungs, eyes, glands, nerve, joints, muscles). Tell them that you are bed bound and unable to get out of bed, that you have syncopes episodes which prevent you to mobilise, and the immunologist that you want to see is unable to see you due to schedule conflict. Ask them to refer you to a hospital immunologist for immediate treatment. You are already flaring with multiple organs involvement, and you are just a step away from being an emergency rescue. If your kidneys are involved, things will become complex and everything will go downhill from thereon. Best wishes, Marie

I have a question for you. Is it better to see a Allergy & Immunology, Immunology, Rheumatology? I asked because I am looking on my insurance right now and wanted to make sure that I am heading in the right direction.

Also, I notified my GI who wanted me to see a rhematologist at her hospital setting BUT I cannot get in , I email her that I may go to the ER of her hospital. You gave me an idea. I just realized that my GI is at the best hospiatl setting and at her hospital there is a rhematologist department but it is not easy to get in. I can fax to them my results and see if they will accept me.

Now I feel more hopeful, Please answer my question. WHy? Because if you said yes I may be able to get in to a specialist. I am praying.
Thanks for your freindship and support, I appreciate you

Hi Rose, I was sent to a hospital immunology clinic by another physician inside the hospital, so the internal referral allowed me to cut through red tape and waiting list to access a world renown Professor of Immunology. So If your GI is willing to write an internal referral to see an immunologist at that hospital, then that would be fabulous. If you fax the rheumatology clinic the blood test results, then you may get an appointment 6 months later. It is best to go through your hospital GI doctor to get her referral, and then attach the referral with your blood test results and a brief explanation of how sick you are, which organs are involved, and how you are bed-bound and immobile.

I went through the immunology clinic first because my doctors at the time thought the symptoms I was having were due to Type 1 hypersensitivity reactions, which required an immunologist to treat. I received treatment and was later diagnosed with lupus, so I was later referred to the rheumatologist. If you think there are more things going on within you that are outside the field of rheumatology, then perhaps a referral to a hospital immunology clinic may be better, where they will subject you to a barrage of tests to find out what problems that you have. But how will you get a referral from your PCP to see an immunologist when your PCP wants you to see her friend/your rheumatologist? Do you need to change PCP to get referrals to see an immunologist?

Hi
I went to the ER last night and they gave me IV pain meds. The meds that they said would really help, I am allegic to. I can fax it to hospital rhematologist. My GI cannot , my insurance will going take it from my PCP. I called my PCP office because hospital follow up and he is booked. They may try to fit me in I have to call on Friday, I do not think I will. I see him in 2-3 weeks anyways. I have to call my eye doctor which I think will be a waste because of everything. BUT I am going to call another rhematologist that I saw last night. SHe is the same person from the foundation. I am going to call her office and see if I can see her. Do you ever feel that because you have too much going on it makes you get the runaround by the medical field? Anyways thank for encouraging me and been supportive

Hi Rose, I am glad to hear that you are receiving treatment for the pain. I think that if I were you, I would book an appointment to see the hospital rheumatologist because the rheumy would have access to tests that are not available to doctors outside of the hospital, and that the rheumy can do an internal referral within the hospital if your conditions lie outside of immunology. There is another possibility that an increase of inflammatory markers in your blood may point to cancer, God forbid. I

I you have met a rheumy from the SS foundation in the hospital, then that can be another option. This rheumy can access/orders for hospital tests and investigations.

If I were you, I would see both the rheumy from the hospital and from the SS foundation to compare diagnosis, if money is no objective. Then I can see who is the better one and select the best one to treat me.

In the beginning of the diagnosis, doctors give you the runaround because they are not certain what kind of medical condition(s) that you have, so they send you to other physicians to do tests. Once the results are all gathered in and all physicians get to analyse the results, then they can reach a firm diagnosis. All of these running around frustrate you, but you must persist until you find a diagnosis and treatment, From then on, everything will flow smoothly.

I am glad to be your friend. I am a fellow AI (autoimmune) veteran so I know what it feels like to be lost in the medical merry go round. All the confusion will end as soon as your doctor(s) find a diagnosis. Good luck, and take care !

Hi Marie
I spoke to my medical case manager and she is going to confirmed something. My eye doctor called me today and requesting that i come to her office on Fri for a lengthy eye exam. Thank God that tomorrow is Thurs otherwise I would not be able to. On top that she is leaving for two weeks she said today. She seems a bit cold in her voice and I noticed it last week. She is normally a bit more freindly in her voice on the phone but she might me just overhwhemled because of personal things.

I do not think that I can see two rhematologist with my insurance. Where I am to go to the hospital for second opinion is kinda like you had a mental breakdown, One time my PCP a few years ago (less than 5 years) request that I go to the ER and she informed me what to say. I did and the ER doctor taught i went crazy. He kinda did tests but frown.

Where I am is not that freindly with certain things. With that in mind, I am also handling a problem with my current aid who I thought I kinda knew BUT I now realized that I do not. My health surrgoate is intervening and things are crazy which is adding to my stress. The aid know that I must not be stress out but she do and find pleasure in doing so. i kinda feel unsafe in my home. My main case manager and health surrgoate is concern. This aid come to think about it, she and her family is a bit werid and something is not right.

Therefore I am doing my best with what I have and a lot falls into my lap. My case managers are supportive verbally BUT that is all. My therapist only keep asking me more and more question with no end results to it. I like my therapist BUT she asked questions makes promises and never fall true. She said that she does not want to retraumatized me BUT asked every questions in order to retrauatized me.

Hi Rose, it seems that you have alot on your plate. Do what you can in your circumstances and don't stress. Just let everything happens as it should. Don't worry about what others think of you, especially of doctors. In the early stages before diagnosis, doctors laughed at me and were convinced I had made up symptoms to garner attention to myself, but blood tests/scans could not be falsified. After my test results came through that I received proper treatment.

If your aid is not helpful to you or try to influence your mind to do things you feel are not right, then speak to your case manager and health surrogate and get the aid replaced. Therapists often ask provoking questions to elicit your truthful response. When you become angry, you blurt things out that you normally keep in your heart. Keep your wits about you. If you don't want to answer any question, just say that you are tired from getting medical treatment, and that you will resume next session. If you say you don't want to talk about certain issues, the therapist will probe and ask provoking questions to make you respond.

Don't stress. Mental stress will lead to physical stress and next thing you know it, you are flaring. Close your eyes and let the stress slides off you. Take care, and please get some sleep.

Hi Maria
Thanks. I am feeling that. BUT how are you doing? You have been very supportive and now I wonder how are you doing.

I felt depressed last night, but I am much better now. I am so old now but I still question life like a little kid. I hope everything is much better for you, with your new doctor and treatment. Hoping that you will have a nice day today. Take care :)

Awww. So glad that you are feeling better. Understand Marie.

Good news first.. My PCP said sure when I ask him if I could have a second opinion. I will present to him and his family member who is my current rhemotogist what the second opinion said. I was relieved. But you were right. Thanks you very much

Now bad news. I broke a bone in my wrist. PCP did a second X-Ray (Hospital last night did first one). My PCP stated that it is the Sjorgen. It is a split in my bone and not by trauma to it.

Oh no, you must be in tremendous pain with the broken bone. I know how that feels like. I have a broken pinky in my right hand and I have been strapping it in these splint. My finger has healed but now it is bent at the last digit so now I am strapping it to keep it straightened.

Can you use your right hand to eat? Do you have family to help you at home? Is your aid helping you, or have you found a new aid who is more compatible?

I hope everything will be well for you. Your autoimmune journey is fraught with difficulties, and that you are alone dealing with this. I am so sorry to hear that. I pray that God will heal your body. Take care, Marie

Hi Marie
Thanks. Yes I can use my right hand but it takes me longer to do everything. The other questions are no no no. I give up trying to etc.

Everyone has their own lives to live. People are busy or the opposite. I live in a very unfriendly no very unsupportive area. Someone thank me for caring. Lol I laughed because for most people am a Light or bright etc because it is so cold here. People focus on self or close relationships.

That's what it seems to be. My main case Manager text me that Friday she wants to come over and bring breakfast. She is a blessing, when things are dark she knows how to cheer me up etc. She becomes very Very supportive during my darkest times. I am blessed to have her. If she could right every wrong for me she would.. Thanks for your prayers.. I think logging on to DS is very supportive.

You know what weird I am not in a lot of pain, nope. My PCP nurse finds that weird. I think I am weird. Anyways thanks you. I appreciate you

No problem Rose, I hope that you will feel better soon. Take care.

Thanks