Heart rate change anyone?

@nemo1 I came across your post with questions /concerns regarding “heart rate change”. It came up in the Diabetes & Endocrinology Group (where I usually hang out) and a discussion pertaining to thyroid. I hope I’m on track here. I saw your profile and noticed that you have posted in about 10 different groups & discussions. From what I read about your many conditions & symptoms you seem to have A LOT going on! A change in heart rate often gets higher priority attention. You mentioned that you were seeing a Dr. regarding the pain & swelling in your feet and calves. What did you find out? Did you also discuss your concerns about heart rate? Most Drs of any specialty will pay attention to that.

Thank you for your reply. I have a lot of health stuff going on. It’s very disheartening. But I plod along.

I did run it past my cardio whom i see on Tuesday but he was not concerned. I have to tell you, with the nerve and muscle stuff thats been happening, that he is unaware of (try to fit my health into one posting is impossible). Even though he said that, what could explain the dip.

I have to schedule an appt follow up with endocrinologist (i see her for diabetes and now the recent thyroid finding) to see what that means.

I’m just scared. I’m handling everything else but the heart rate threw me. Still does.

By the way, I was scheduled to see the pcp to see if she’d order a sonogram. I had a horrible night with spasms and was up all night. I had a hard time walking. I called her and cancelled telling them I am having a hard time walking. They kept saying to come in. Rescheduled appt. that was regarding the leg and not any other stuff I have going on.

I’m hope I answered your question. I have an appt re: leg in a ridiculous two weeks. I will see if the cardiologist is concerned about it.

I drink extra coffee to keep my hr in the 70s…I appreciate your reaching out. I’m in the middle of a diagnosis…getting one (another) and have an MRI, CT and possible spinal tap coming up. Its all not soon enough because I cant’ be treated until they are sure what it is. It is very disturbing.

Thanks for “listening”.

Nemo

@nemo1 you DO have a lot of health stuff going on and it sounds like you have a variety of specialists to help you as you “plod along” (cardiologist, endocrinologist, primary care provider or PCP). I have several different specialists for my medical stuff too. I found it helpful to have them all part of the same healthcare system. That way they have access to each others’ reports, know all my diagnoses, labs, medications & treatments etc. I have confidence that everyone is on the same page and they can more easily collaborate to see that you get the care I need head to toes inside and out. Right now you are waiting on an MRI, CT, sonogram and possible spinal tap tests? Hopefully the providers who have ordered these tests can collaborate and provide some answers & solutions to your concerns including your heart rate questions. Hang in there during the plodding along. You will are in my thoughts and prayers.

Hello Cheryl,

Thankfully I have that handled. All doctors under one roof. Except the neuromuscular. She is part of another group. Because i see so many specialists and take so much medication its hard to keep up. That’s true, diagnosis and conditions and meds are listed on the network. I don’t know what I would have done without the portal to talk to doctors. But this neuromuscular does not want to prescribe before she diagnosis which I don’t blame her. But its taking so long and I’m in so much pain it had me cancel another appointment today, the cardiologist. I had to reschedule that. It’s too much for me. I’m overwhelmed. Even if they explained one condition if it links to another organ, they refer out. They in my experience won’t really comment on another specialty as it is not theirs. Also, when i go to an appointment, I just cover the basic of one problem. They don’t want a book they want a sentence, on the “chief complaint”. That is hard for me to summarize. I try. Then I have to take notes and they look at me like I have two heads. So Ive learned go in with: 1. Chief complaint 2. Diagnose 3. Remedy/corrective action. So I trust with the follow ups I go to the specialists keep records and its on the portal. I think I need a new pcp. I may soon be going out of town for that. Same network. I have a regular neurologist who has helped me when my pcp was on vacation for a month at a time. That doc told me where to go what to do, she has been acting as my pcp. She’s phenomenal. I can’t have that. I ended up going to the er because she wasn’t around. Not trying to bash anyone, just the facts. I’m still waiting on Mayo lab work looking for antibodies etc its to take 3+ weeks I have a few days to go if all goes well, MRI, CT and maybe spinal tap. Than maybe I’ll get meds to help these horrendous spasms that have already almost sent me to er. I hope she gets an idea quick (she has idea but is r/o etc). I want her to be thorough which she is. But its taking time. I’m feeling alone with these symptoms that scare me. When the spasms come on, it’s unbearable. I’m sorry to complain, I thought neuropathy was bad. A spasm that holds on is too much to bear.thank you for your prayers and guidance. Sometimes I feel alone with all this and think the worst. I’m trying to be hopeful, but the longer I wait, I’don’t know. I don’t have a lot of confidence in my pcp. I need another who can handle complex cases. Thanks. God Bless You. Feel better.

@nemo1 I thought I’d reach out to ask how you are doing as you are waiting out the 3+ weeks for test results? That is a long time to wait.

Have you decided on changing PCP’s? It is important to feel confident in your PCP. You mentioned that your regular neurologist has been acting as your PCP. Is that the same as the neuromuscular provider that you have mentioned or someone else?

I don’t feel like you are complaining. You have so many diagnoses, conditions, medications, treatments, “corrective actions” that you are finding it “hard to keep up” and “it’s too much” for you. You are “overwhelmed”, “feeling alone” and “scared”. I hope I got that right

Do you have a friend or family member that can help? This would be a great support for dealing with the things listed above.

A friend or family member could also help you get to appointments. Sometimes extra eyes and ears at an appointment is helpful to keep all the details sorted. On several occasions you have mentioned that you have had to cancel appointments and reschedule. I think when this happens the provider may be less likely to take your concerns seriously and unfortunately less likely to be inclined to help.

You initially posted about about a change in heart rate you said your cardiologist wasn’t concerned about but you also canceled an appointment with the cardiologist and need to reschedule. You had a pain in your leg that the provider wanted you to be seen for to determine if a sonogram was necessary. Did you do that?

With all you have going on please see the specialists you need to, enlist someone to help get you there and stay organized. I hope you can stay out of ER. That could only further complicate everything. Could you please update as you are comfortable doing so?

Hi. Thanks for checking on me Cheryl.

Yes, I’m still waiting on blood work. I was told it was sent out to the Mayo Clinic so It is taking a while. I think this marks the third week. I’m holding my breath. My MRI is monday. Yesterday was a fiasco. I take paratransit. That was a nightmare they did not come on time and I had to get a reg. Taxi. It was nerve-racking. I don’t have family local. If i did, i still would not bug them. I have too many appointments to bug anyone. You should see my calendar. My MIL wants to accompany but she is a patient herself.

My honey has a demanding job. I am trying to have him take me to my MRI and drop me off. Because I can’t risk losing that spot to incompetent drivers/schedulers/whoever that is…He wants me to wait until after diagnosis to change PCP’S. I agree.

My neurologist referred me to the neuromuscular doctor. My PCP could not comprehend that visit. A turn off and I had to explain something basic to her. She is overwhelmed and takes months off at a time. I can’t afford that. If there is a problem I need a doctor who is there. The neuromuscular doctor is helping me. I appreciate that. When you’re in a lot of pain and nobody medical has the time to address it I feel Ill fall in the cracks. I have been able to lean on my neurologist who refers me to top notch doctors. I’ve been able to make most it’s just lately its been difficult to get there due to limitations.

I adore my neurologist. She has been referring me to doctors when my pcp was on vacation for a month (two separate times). She is compassionate and sent me to the NM dr.

If I can’t walk I cant walk to the bus to take me to the doctors. I needed a wheelchair. I don’t have anyone to push me and don’t have a wheelchair. Just a cane. So I cancel the appointment to when I can get on my feet and walk. If the doctor doesn’t understand that when they see me its there problem. I’m can’t entertain anything else when I can’t get on my feet. It is ridiculous. But it happens and has been happening. At times it gets worse then eases. I don’t know what is triggering all this. I need answers.

I did reschedule the cardiologist in a week and a half. I should know by then if I need an LP.

I did get a sonogram of legs. No clots. Edema of left calf (the one that was rock hard the other day). I had this exam yesterday. The foot dr gave me the script for it. So clot is r/o. Laying on the hard table was rough it hurt the lower back. What can I do? Grin and bear it. Until I can’t.

I wish I could take the relaxers. But they cause urinary retention. So I can’t have that. I saw the pcp not long ago for that. She just said come off it, made no further recommendations. I’m underwhelmed. I’m sure she means well but I need someone who is willing and capable of looking at The Whole picture.

After diagnosis, I will ask my neurologist if she could recommend someone who likes challenging cases as a PCP.

I make sure I update my pcp on how I am who i see what they find etc. what she does with that is upload it so other drs can be in the know.

I hope I answered your questions. I had family offer to take me If I couldn’t get there. I can’t ask them to do that. It simply is unrealistic. I’ve thought it through.

Thank you,

Nemo

Almost forgot, the EMG showed severe lumbosacral pararadiculopathy also severe pararadiculopathy in c spine. Entire neck. Worse at C5 and C7 and L5 and S1. Looking for compression or inflammation. If its one way she wants an LP…

Thank you for what you said. I had a cardiology appointment the other day. I’m wearing a halter monitor for 15 days and will have an echo done. I had blood work done. He’s doubling up on cholesterol meds. Not changing medication yet. Wants to see what’s going on with the heart rate fluctuations. He felt swelling (same leg I have problems).

Mentally I feel stronger. We shall see. Sometimes I’m down but today I’m better. Maybe because I am going to get answers to long standing questions.

He told me to go back to the pulmonologist about the breathing issue and cpap machine. I see the pulmonologist in 2 weeks. I see the urinologist next week…It takes effort to make it to appointments. Paratransit rides take a long time to pick up. Standing is an issue. Oh well. Can’t have it all! Lol.

I hope she does not delay dx by saying I need a LP. One step at a time.