Autoimmune diagnosing

Posted by bunnysammy @bunnysammy, Jun 30, 2018

Hi, I'm just a bit frustrated and wanted to talk to some people going through the same things. I thought I had Celiac disease but because I really don't like going to the doctors I avoided getting a for sure diagnosis and went gluten free. It's definitely helped with a lot of my symptoms. I got a blood test a few months ago for my doctor. My platelet count was extremely low as well as my iron and b12. She told me it looked like something autoimmune but I didn't know what that meant and she didn't press me to see other doctors about it. She also mentioned something seemed strange with my bone marrow. I didn't think anything of it. I thought the vitamins she suggested were all I needed. Well in the past couple months I've been in more pain than usual. Sharp chest pains, stiff and painful joints and I ache everyday. I've also had a persistent low grade fever. I get sharp pains in my hands too. I feel super weak and fatigued daily which I've always had bouts of but for awhile being gluten free helped. I can't keep up with my boyfriend when we go on walks anymore. My pain keeps me up at night. I have a few other symptoms but these are the most frustrating ones. Does anyone have any idea what this could be? I set up a doctors appointment but it'll be another month till they can see me.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@gailb

@tina5

I'm so sorry about your negative experience at Mayo with the person in neurology. Please, don't give up. I recommend that you call the neurology department back and ask to speak with a doctor or the nurse. Then, let that person know your health problem, as well as the way you felt treated the first time you called. I know that Mayo encourages open communication and treating people with respect, so they people in charge need to have your information. Thanks so much for sharing your experience.

Gail
Volunteer Mentor

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I guess I wonder if the person I speak to by phone will have the expertise to know exactly what type of doctor I need to start with. I live in NM, so I want my visit to be productive.

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@gailb

@tina5

I'm so sorry about your negative experience at Mayo with the person in neurology. Please, don't give up. I recommend that you call the neurology department back and ask to speak with a doctor or the nurse. Then, let that person know your health problem, as well as the way you felt treated the first time you called. I know that Mayo encourages open communication and treating people with respect, so they people in charge need to have your information. Thanks so much for sharing your experience.

Gail
Volunteer Mentor

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Thanks John. I am so sorry but I posted additional questions to Gail!

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@gailb

@tina5

I'm so sorry about your negative experience at Mayo with the person in neurology. Please, don't give up. I recommend that you call the neurology department back and ask to speak with a doctor or the nurse. Then, let that person know your health problem, as well as the way you felt treated the first time you called. I know that Mayo encourages open communication and treating people with respect, so they people in charge need to have your information. Thanks so much for sharing your experience.

Gail
Volunteer Mentor

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Hi @sita, can you ask your doctor to give you a referral? Is it possible to talk with one of your current doctors and discuss it with him? Once you get an appointment at Mayo the doctor can send you to different areas of specialties based on results of their findings. I have no medical training or background but that is my understanding. I recently went to the Mayo Rochester campus to see a Lymphedema specialist and based on some tests he ordered, he's trying to get me to see a knee specialist in Orthopedics. Mayo's doctors work as a team so from your initial appointment they should get you to right area.

I think if you call for an appointment, you will be asked some questions to determine the area/doctor for the appointment. I would write down your symptoms and health issues and assign a priority of importance to each one. Then when you talk to person making your appointment, give her your main issue first and so forth.

Hope this helps.

John

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@gailb

@tina5

I'm so sorry about your negative experience at Mayo with the person in neurology. Please, don't give up. I recommend that you call the neurology department back and ask to speak with a doctor or the nurse. Then, let that person know your health problem, as well as the way you felt treated the first time you called. I know that Mayo encourages open communication and treating people with respect, so they people in charge need to have your information. Thanks so much for sharing your experience.

Gail
Volunteer Mentor

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John
These are good ideas. My current doctor is useless. I had wanted to only spend a day at Mayo, since I live in NM. I will research this further. Thanks for your response!

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@caroleramsay

Hi! Hang in there! And start treating yourself for autoimmune in general ways AND learning more and more management tools for individual symptoms – WHILE you continue to look for that rheumatologist who guesses correctly what to test you for. (One day, we will use technology correctly and we won't need for doctors to guess which things to test you for anymore.)
Because it may take a year or more to get to a diagnosis of which autoimmune illness is attacking your joints and body (it may be as simple as RA though) it will be valuable to utilize over the counter things like ibuprofen and gluco- corticosteroid (Flonase/nasacort) sprays for inflammation and pain minimization. You might try 3 ibuprofen as soon as you feel the first twinge of inflammatory pain and then 3 more 3 hours later.
Other management tools I use run the gamut and include things like a daily walk, low/no sugar, no caffeine after 9am, no alcohol, very low/no carbs, sleeping at a significant incline, etc FIND WHAT WORKS FOR YOU.
Remember, even WITH a diagnosis, management tools will REMAIN the primary treatment strategy (there is no cure) so embrace them as a lifestyle and don't let yourself get caught up with the stress of not having a diagnosis.
Best of luck!

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Thank you so much for the suggestions! I've been trying to avoid taking a lot of ibuprofen but I've recently given up on that idea haha. Tiger balm is also a good one for outer pain. I sleep at an incline when I get chest pains. It doesn't stop them but it does help. I saw someone suggesting something call a back pod I think from Amazon that helps with chest pains. I might try that too.

I'm nervous about the diagnosis taking a long time. It's strange… everyday something new hurts. Today I started getting sharp pains around where one of my kidneys are. It's worrying me.

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@51irishlass

Hi, hope I do better at this than yeasterday. John knows, I goofed up. Anyway I have several autoimmune diseases. Yesterday I only mentioned IC. It took several yrs to be formally diagnosed with Mast Cell Activation Syndrome that is affiliated with autoimmune diseases. I tried and tried to get drs to listen and not until one of them had a relative be diagnosed with MCAS was I vindicated and this just happened last week. Thank goodness I have a wonderful pharmacist who is bending over backwards to get me the correct antihistamine compounded that I won’t react to. My allergist is the one with the relative who has had trouble trying to find any meds that I don’t react to negatively. I have to have everything compounded. So, I guess my hope is that don’t give up and learn as much as you can. Also, do things for yourself that will do you no harm, but be proactive with what you can.

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Ah that sounds like a frustrating process. Good luck!
I won't give up, thank you:)

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@dntsass01

I feel bad that no one has been able to help you. I know I would definitely be looking for a new doctor. Anyway, I have multiple autoimmune diseases and your symptoms sound like it could be anyone of them. I have Crohns, Celiac, Autoimmune Hepatitis, and Fibromyalgia. It is often hard to tell which one is causing the problem. I've had some awesome Dr's at Mayo and I know they will get to the bottom of this. I'm sure you know that they can't test you for Celiac if you have already eliminated the gluten. Take Care and hang in there!!

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Hopefully soon I'll get to the bottom of it. I've been doing tons of research on who to see in my area. I don't think there is Mayo Clinic near me. But I've found some promising options.

Yeah, I heard you have to eat gluten for 3 months or something for them to test it but I'm not doing that. I'll be so sick I won't be able to work at all.

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@lioness

@bunnysammy your symptoms sound like fibromyalgia as this is one of my problems for me known of the none
, meds helped but the Epsom salts bath or just wring out a washcloth from the E.S.and leave on muscle/s A magnesium supplement also Ice at times Heat other times fibromyalgia is a fickle problem.Best of luck.

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That's one of my suspicions. I definitely take a epsom salt bath every night. Tiger balm is a good pain reliever for my muscles too. Have you tried it?

Thank you:)

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@lioness

@bunnysammy your symptoms sound like fibromyalgia as this is one of my problems for me known of the none
, meds helped but the Epsom salts bath or just wring out a washcloth from the E.S.and leave on muscle/s A magnesium supplement also Ice at times Heat other times fibromyalgia is a fickle problem.Best of luck.

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@bunnysammy yes I have ,my son used it when he works out but I found Arnica Gel works I use it and drink Arnica tea for pain Only place I found it is Rite Aide drug store .My Dr.put a referral in for me to see a neurosurgeon for I have a bulging disc that's giving me alot of back pain now.I have a great rheumatologist who has helped me with fibro but old fashion remedies do the best like Apple Cider vinegar in bath water also.

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@lioness

@bunnysammy your symptoms sound like fibromyalgia as this is one of my problems for me known of the none
, meds helped but the Epsom salts bath or just wring out a washcloth from the E.S.and leave on muscle/s A magnesium supplement also Ice at times Heat other times fibromyalgia is a fickle problem.Best of luck.

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@lioness I hope he can help with that. That sounds painful!

I use arnica too. I didn't know there was a tea. I'm going to try that too.

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@51irishlass

Hi, hope I do better at this than yeasterday. John knows, I goofed up. Anyway I have several autoimmune diseases. Yesterday I only mentioned IC. It took several yrs to be formally diagnosed with Mast Cell Activation Syndrome that is affiliated with autoimmune diseases. I tried and tried to get drs to listen and not until one of them had a relative be diagnosed with MCAS was I vindicated and this just happened last week. Thank goodness I have a wonderful pharmacist who is bending over backwards to get me the correct antihistamine compounded that I won’t react to. My allergist is the one with the relative who has had trouble trying to find any meds that I don’t react to negatively. I have to have everything compounded. So, I guess my hope is that don’t give up and learn as much as you can. Also, do things for yourself that will do you no harm, but be proactive with what you can.

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You posted correctly, @51irishlass! It's good to get more background relevant to your autoimmune diseases. You may also be interested in taking part in the MCAS discussion group, which can be found at this link on Connect:

– Mast Cell Activation https://connect.mayoclinic.org/discussion/mast-cell-activation/

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My friend, you need to ask for a referral to a Hematologist (for your platelets and other blood issues), and find a primary Doctor who cares. Seriously. I'm a retired/disabled nurse with multiple autoimmune diseases, and I lost my 21 year old son 2 weeks ago to what can only be described as multiple episodes of neglect or disrespect by the medical community. Sometimes we don't present the same way as a textbook. Well, that's life. People are not books. Nor do we all come with a unique owner's manual. Best of luck to you.

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