Not sure where to turn next or what doctor to see

Posted by natasha1349 @natasha1349, 3 days ago

I’ve been having clusters of new symptoms, sometimes alarming ones and I’m not sure if they are related or where to turn.

Fatigue. To the point where I can’t get out of bed. Sometimes I am so fatigued, I cant even sleep.

Weird labs. One lab result will show normal everything. The next will show low platelets or high red blood cells or elevated creatinine.

Extreme tingling in my feet. Especially when I’m trying to sleep. I feel Like I constantly need to move my legs.

A weird patch of very rough and scaly skin on my lower left leg. It’s been going on for over a month. Currently on a topical steroid cream but there has been no improvement. Dermatologist isn’t sure what it is. Follow up with them is October 6th. But it’s not getting any better.

Excessive sweating. Crying spells. Brain fog. Muscle aches. Nosebleeds.

Today was the first time chest tightness and shortness of breath dropped by. I went To the ER. Heart rate was 149 and blood pressure was 133/96 when I got there. For context; I’ve never had high blood pressure or any kind of blood pressure issues.
They did EKG, blood work and urine sample. Unfortunately, I was Told that nothing life threatening was happening so they were sending me home, but that I should Follow up with a primary care doctor. When discharged, blood pressure was 131/77 and heart rate was 131. Mind you, I did Nothing for 3 hours except sit in the bed. The monitor went off several times.

I understand That the ER’s job is to make sure a life threatening emergency isn’t going to happen. But to basically send me on my way with no explanation? It should be noted that I was discharged at 3:30pm today and it’s now 9:41 and my chest is still tight. I’m still not feeling normal.

I don’t know what to do next. I don’t know where to turn. I feel Like I’m not being taken seriously. I don’t know what this could be. I dont Know what doctor to see.

Has anyone ever experienced any of these symptoms? Looking for some advice on what to do next or where to turn.

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dmarkz0101 | @dmarkz0101 | 3 days ago

I feel your pain and I'm sorry your not feeling well. I'm not sure what's happening with your symptoms but the tingling in your feet may be a beginning sign of neuropathy. I have it only at night and I get that tingling along with pins and needles in my feet. Maybe something to speak to your PCP about. I hope you figure out what's happening in your body soon. Sending you good thoughts and prayers.
Donna

gently | @gently | 3 days ago

Natasha, there are several autoimmune conditions that could be causing your symptoms. You get the most symptom coverage from lupus but it may not be autoimmune at all. Still you might consider (I mean I would)
seeing a rheumatologist. The first test would be serum ANA (anti nuclear antibody test)
You might also (and at the same time) find a neurologist who specializes in autonomic disorders.
Can you think of anything even as small as a bug bite that preceded these symptoms.

SusanEllen66 Susan McMichael | @SusanEllen66 | 3 days ago

You have a lot going on. I don’t know what specialist you have seen but, I think a neurologist (nerves in your legs etc.), rheumatologist (for autoimmune disease), cardiologist.

Blood tests are sometimes near perfect when we feel sick.

Hopefully you’ll get an answer soon.

isadora2021 | @isadora2021 | 3 days ago

@natasha1349 Goodness you have a lot going on and all of them unpleasant and no doubt quite frightening. Are you seeing a doctor to help refer you to specialists?

I have recently started having the opposite from you - very low blood pressure and resting heart rate around 42-44 (bradycardia). I’ve had an ultrasound done of my heart and a CT scan and there’s no structural issue. I have had an ECG and an EKG and no answers. It seems my chemotherapy and immunotherapy treatment may have damaged the electrical circuit in my heart. I’m off to see a cardiologist.

Have you had cancer treatment too? It sounds like you may also have neuropathy which luckily I haven’t had.

For your own peace of mind you need a doctor like I have who is trying to get me answers.

celia16 | @celia16 | 3 days ago

I’ve experienced multiple symptoms previously and ended up seeing various specialists for a diagnosis. Sometimes. It’s a matter of ruling out various potential culprits. Your primary care physician may be a good place to start. This is especially due to the fact that many specialists, such as neurologists, rheumatologists, endocrinologists, etc., require a referral from another doctor. And, their wait list can be months away for an appointment.

As you wait for answers, talking with a therapist to help with anxiety can also help. Also, keep a journal of your symptoms, copies of your labs and photos of your skin eruptions. Good luck with finding answers.

Laurie, Volunteer Mentor | @roch | 2 days ago

@natasha1349

Welcome to Mayo Connect. I understand the anxiety of new symptoms without knowing the reason.

How are you doing this morning? Are you going to contact your primary provider to follow up?

Rubyslippers | @triciaot | 2 days ago

I’d go to a rheumatologist. Even if you went to a general practitioner or internist they are going to want to test similar to the rheumatologist lab list - might as well have the specialist review those tests. A good rheumatologist usually has informed recommendations if they don’t find anything.

A neurologist could check out the tingling, but there is so much going on the answer is probably not going to be only a neurology issue.

A rheumatologist specializes in systemic, autoimmune, and connective tissue diseases (such as Lupus, Vasculitis, or Scleroderma). These conditions frequently cause fluctuating blood labs (low platelets, high RBCs), kidney involvement (elevated creatinine), unexplained skin patches, fatigue, and systemic inflammation that can affect the heart lining or nerves.

Best wishes with outcomes from doctor visits!