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 Support Group.

@bunnysammy I am sorry to say that I have no idea what you have, but I have some ideas of what you can do about it. First, track everything about your mind and body you can put on paper, no matter how small or insignificant it seems. Things like: Do you hiccup after eating a hot taco? Do your feet smell weird? Do your eyelids get red lines along the edges? Do you need a cane? Thing is, the more the doc has to work with the more likely it is he or she can help you. Some things you note will seem to be irrelevant, but you never know what the doc will pick upon that you thought was nothing. I have a little bloody spot on my lower eyelid. I thought it was from a speck of dust in my eye. The doc said "Oh, a petechiae! You may have an autoimmune of some sort." Still you are doing what you can to help yourself. Gather all the post-visit and discharge papers and save them for the doc. Take your BP and Pulse every day and record them. I started doing that about 3 years ago, and now I pretty well understand what I am fighting. I don't have it all but I surely have thought it through a lot, and have a lot to help myself, as well as help the doctor. https://bit.Ly/1w7j4j8

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@bunnysammy Hi Your symptoms sound like fibromyalgia ?with other problems I am a retired nurse ,have you seen a rheumatologist?if not I suggest you may want too are your lymph glands swollen? I had mono in my 20,s your symptoms sound like what I had low grade fever thats why I suggest you talk to your Dr about blood work for Epstein Barr

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@bunnysammy Hi, again.Just so you can have a good laugh, I recently ran a list of symptoms and ailments from some of my past diagnoses. I list them now so you can understand a little more of why the docs are slow diagnosing some things. Dystrophy and distortion of All Gastro-Intestinal vessels, Skin, Organs, Fatigue, Weight loss, Pain everywhere, Fractures, Hematuria, Ureter, Bladder, Conjunctiva, Cornea Lattice, Eye Orbital and Toe Purpura, Dysphonia, Larynx, Bone Lesions, Petechiae, Purpura, Ecchymoses, Papules, Nodules, Plaques, Bullous Lesions, Onychodystrophy, Alopecia, Joints, Polyarthropathy of Shoulders, Wrists, Hands, Knees, Polymyalgia Rheumatica, Lung Nodules and undefined growths, Spinal Cord Lesions, missing Factor X.
Most of the following diagnoses have been often given, but not known as Amyloidosis Light Chain Dyscrasias. Rheumatic fever, Polio, multiple Concussions before age 25, persistent Bacterial Pneumonia, Chronic Encephalitis, Chronic Bronchiectasis, masses of Lung Nodule, Kidney Failure, Right Heart Failure, Left Heart Failure, A-Fib, Heart Palpitation, Sawtooth QRS tracing, Sawtooth Systolic tracing, Multiple Myeloma, Arrhythmia, Syncope, Alzheimer’s, Epilepsy, Diabetes, Typhoid, Hematuria, Melanoma on Eyelids, Forehead, Toe, Belly, Arms: excess Eosinophils, Tendonitis in Feet, Leg, Hip, Shoulder, Back: Larynx Granuloma, Lymphoma, Prostate Cancer, Bladder Cancer, Esophageal Cancer, Barrett’s Esophagus, Stomach Cancer, chronic Nasal Passage Bacteria, Nodules on Spine, cross-hatch Skin Rash on Butt, Arms, Forehead, Feet, Cerebral Amyloid Angiopathy. Now, don't feel sorry for me. Just laugh because, wow! Do I have something to tell the Dr when he/she says "Well, what's up?" And the Dr thinks I'm psycho because I write all these things down. It's the only way I can remember them until I see another doc. Besides, I'm almost 80, and have outlived the docs that told me I would probably die that night, 30 years ago.

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@johnbishop

Hello @bunnysammy – Welcome to Mayo Connect. I’m happy you found us. Connect is a good place to share your health concerns, ask questions and read what other Connect members with similar health issues are doing for treatments. I’m sorry you haven’t been able to get any solid answers. I’m sure that can get you feeling like giving up. Don’t do it! Posting on Connect is a good start and hopefully someone can provide information that will help. Here is a story that may help you know you are not alone:

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I'm also tagging a few members who have had difficulty getting a diagnosis. @lillone43, @heidisue, @kibwezi, @techi, @sacolucci can you offer any suggestions for @bunnysammy ?

One thing I can think of is to make a list of all your symptoms and questions and maybe a daily pain log rating your pain. Then take that with you to your doctors appointment and see if you can get some answers. It's so easy to forget to ask or tell the doctor your main questions during the appointment and the list can become your talking points.

John

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Hi John and all, I'm not sure how to start a new post, so forgive me if this is incorrect. My questions are that I have some inflammation mostly in left hand, now have adhesive capsulitis following a yoga move. Actually, had become quite weak on top of body so this probably contributed to frozen shoulders. I've tried to treat naturally with herbs, etc., but inflammation in left hand and generalized discomfort following exercise kept me from doing too much. I walk. My CRP is usually 0.2 or less but my sed rate jumps around from between 25 to 60. Rheumatologist thinks I have seronegative arthritis (RA), but since none of my blood markers show it, I'm skeptical. I seem to have some connective tissue issues though, I believe as stretching too much can cause pain for several days. Rheum put me on methotrexate 7 months ago. It may help some but don't notice really much improvement. Now he wants to add Embrel and Prolia (because I have osteoporosis, -3.4 in spine at one point; hips -2.5 or so, too). I'm scared to death of both drugs. Any recommendations on drugs, side effects, what to do, reasonable to resist drugs?

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Hello Ann2 my name is Beryl and I have read your post this morning concerning , getting diagnosed …..you are not on your own as many of us have had trouble getting the right handle on the thing that is spoiling our lives ….

I have Polymyalgia Rhumatica , and had it for ten years and have been treated with Prednesone and nothing else…..I am pleased to say that although I am far from being out of the wood…..it is letting me do more these days …..

Maybe you could suggest to your doc to test for this as many don't seem to get the right answer straight off….although I am glad to say mine did…..Beryl…..keep us informed on how you get on please….

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@johnbishop

Hello @bunnysammy – Welcome to Mayo Connect. I’m happy you found us. Connect is a good place to share your health concerns, ask questions and read what other Connect members with similar health issues are doing for treatments. I’m sorry you haven’t been able to get any solid answers. I’m sure that can get you feeling like giving up. Don’t do it! Posting on Connect is a good start and hopefully someone can provide information that will help. Here is a story that may help you know you are not alone:

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I'm also tagging a few members who have had difficulty getting a diagnosis. @lillone43, @heidisue, @kibwezi, @techi, @sacolucci can you offer any suggestions for @bunnysammy ?

One thing I can think of is to make a list of all your symptoms and questions and maybe a daily pain log rating your pain. Then take that with you to your doctors appointment and see if you can get some answers. It's so easy to forget to ask or tell the doctor your main questions during the appointment and the list can become your talking points.

John

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Hi @ann2 – To start a new discussion in the same Group (in this case Autoimmune), just go to the top and click Autoimmune next to Group. This will take you to the Group Autoimmune where you can click the Start A Discussion button and type your new discussion post.

As patients it would be better to have a discussion with your doctor about the side effects and risks of the new drugs vs the risk of your condition getting worse. I'm with you on not liking some of the new drugs especially after watching a TV commercial and the negatives they list off in the last 20 seconds or so of the commercial.

John

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Hi Sammy I am also new to the Mayo Clinic. I share in your pain I was diagnosed two months ago with mixed connective tissue disease. So I experience the same you do and more. I haven’t started treatment yet I so scared because we have two little kids that rely on me still a lot. I have managed my pain a bit with using cannabis in a hubbly at night when the pains become to much and then I drink a herbal pain medication called “ Threshold Real MSM” I take two at a time it helps me sleep better and also drink rehydration water regularly. My doctor told me that if the cannabis cakes or thru hubbly works for me I can use it as it’s more natural and is a good herb that doesn’t harm you as long as you are taking it in moderation. It also helps you to relax so that you muscles don’t tenses up. I will also be see the physician soon to discuss treatment.

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Can anyone with Multiple Myeloma share their experience if they have taken the 3rd covid booster shot. I’m in my cycle3 for myeloma chemo and will be doing stem cell transplant in Jan/Feb 2022. I’m afraid of side affects with booster shot/chemo mix??
Thank you

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@sylvia67

Can anyone with Multiple Myeloma share their experience if they have taken the 3rd covid booster shot. I’m in my cycle3 for myeloma chemo and will be doing stem cell transplant in Jan/Feb 2022. I’m afraid of side affects with booster shot/chemo mix??
Thank you

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Hi Sylvia. Have you talked to your oncologist about the 3rd booster shot? They may defer you until you’re finished with the chemo. It’s a lot going on in your body right now.
How are you tolerating the chemo so far? Are you having an autologous stem cell transplant where you’ll be using your own cells?

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@sylvia67

Can anyone with Multiple Myeloma share their experience if they have taken the 3rd covid booster shot. I’m in my cycle3 for myeloma chemo and will be doing stem cell transplant in Jan/Feb 2022. I’m afraid of side affects with booster shot/chemo mix??
Thank you

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Hi, @sylvia67 @loribmt gave you great advice about talking with your doctor before you make any decisions! We’ll also ask @gingerw for her opinion. She is currently receiving chemo for multiple myeloma.

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