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Can find answers but something is definitely wrong!
Hello, I am a 42 yr old female.For several years I have been chasing a diagnosis unsuccessfully. I can never get answers- the responses I have received from Drs ranges from you have no lesions on your brain in mri so you don’t have MS and I can’t feel your pain, so…as I was guided to the door, to undifferentiated connective tissue, to somatoform(which was the worst!! I had to request a psych evaluation to prove it wasn’t “in my head” as the dr put it, and once that was on my chart no dr moved passed it and dismissed me- so I had psych evaluation to get it removed) I have progressively gotten worse with every passing year, it waxes and wanes, I have an elevated ANA, high platelets, anemia, elevated C reactive protein…eczema, migraines, balance issues (a few falls, mostly walk diagonally so everyone hates to walk beside me and get bumped into all the time) dizziness, and brain zaps, carpal tunnel bilateral so badly I was told I look like I have the hands of an 80 yr old seamstress, nerve wise, had release, and has helped reduce significantly the feeling like I slapped cold concrete but still exists in waves) brain fog, difficulty finding my words on top of difficulty actually completing a sentence with out without tripping over my words like Im tongue tied, extreme fatigue, wicked GI issues-specifically distended hard bloated belly in flares, told chronic inactive gastritis, shatzkis rings, constipation mostly, joint pain and swelling- mostly shoulders, hips, knees, hands, chest pain on and off, sores in mouth and nose, mostly nose is worse), and then of course the depression that comes from living like this-tho it’s been suggested my depression causes it; I know what came first! Grrrrr! I can’t fake blood labs, or swelling, rashes (I get a linear, solid, raised “rash” across the front of my neck, that looks similar to what a blotchy reaction would look like except it’s one long blotch) I also had COVID in December and my sx have been exacerbated ever since. I’ve been made to feel like I’m crazy and want to be labeled (they think because I want attention, it really is because with a name/diagnosis I can hopefully get the right treatment and also validation that I’m not “crazy”. My brain says give up and just accept this is life but my body is desperate for help!!! Help!!!!
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Have you seen a functional medicine doctor? Have you had a Lyme test? Do you have arthritis in your hands (carpal tunnel tends not to twist hands, but arthritis does)? What is your actual ANA and CRP?
Unfortunately it takes years to get a diagnosis for so many, and so many are told it is a psychological problem. In the end a label makes little difference other than for an insurance code, but it does gain respect for your suffering. That said, what medications would be acceptable to you? Would you take prednisone or other immune-suppressants?
I really think a functional medicine doctor or a rheumatologist with a more integrative bent might be of help to you. Or a physiatrist perhaps. Spaulding Rehab has an extensive program with MD (physiatrist), PT, OT and psychologist for pain and illness management, which is quite integrative in its approach. Perhaps you could find a program like that.
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2 Reactions@katened1120 You have really been through a lot, haven’t you? I’m so sorry. Autoimmune diseases are like that, everything seems so vague to everyone but the sufferer.
I’m going to suggest that you start a list of your most problematic symptoms/problems and how long you’ve had them. You want to narrow down things and get a handle on your problem so that a doctor will be better able to understand. I included a link to a discussion on meeting a specialist:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Also, look for medical centers of excellence or university medical hospitals in your state. These can be your best chance of finding help. There is also a Mayo Clinic Care Network, which includes hospitals across the country:
https://mayoclinic.org/about-mayo-clinic/care-network/members
Will you post and let me know when you learn something?
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4 Reactions@katened1120 I also found this in my ‘stash’ of stuff. Hope it helps!
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
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4 ReactionsPlease don’t give up. It’s the doctors that can’t give a diagnosis so you are crazy. You’re young. Keep going. Maybe a trip to Mayo when it gets warmer. I was diagnosed with PMR and got through that. Then came GCA and I am 80 and still on Actemra and prednisone. I’ll never get off Prednisone because of no adrenals. I now have several other issues. I. E. Tumor in my hyperglossal nerve which controls your tongue. There are several other unusual things going on. I live in Florida and am finding it difficult getting proper diagnosis. Speech is a problem, eating, drinking and/or taking pills. But I’m not finished with this life. So you at 42 need to find a way to get at least a diagnosis. Message me I’m on F/B. Marilyn Redder. We should continue this conversation.
Thank you! I was just reading about functional medicine and it sounded very appealing. The rheumatologist I was seeing had me on plaquenil and when I was having a flare up, prednisone but she decided not to keep prescribing because she could find a definitive dx. It was helping though. It’s tough too because I have hypermobility and have seen drs that have said, “well you move good…” completely disregarding hyper mobility is a part of it. My ANA last was 1:160 and I don’t recall my c reactive, but I have tested positive for rheumatoid factor but also negative so dismissed- and they don’t know why my plts are so high, have had iron infusions for my anemia…
I am going to look into functional medicine, it is intriguing.
Thank you!!
I’m so sorry for all you are going through Marilyn! Thank you for all the information! I am definitely going to use it!!
It would be nice to find someone who will prescribe without a diagnosis. The system requires codes for everything. If a treatment helps , it seems it should continue! But liability and insurance concerns are obstacles.
Your ANA is not too bad. You almost wish it was worse! Have you had any Lyme tests? They can be unreliable and different docs read them differently but a functional medicine doc would know about that,
Hello I am seronegative sjogrens (POTS/dysautonomia/SFN). It was difficult getting diagnosed because I'm seronegative. I had a neuro presentation first and the dryness came later. My PCP did a physician referral to Mayo and that is where I got my answers.