Connect
Strep Group C, joint pain in patient w/ autism, ADHD & also trans
I first emailed my doctor at the beginning of May about symptoms of illness. I had flu-like symptoms along with flares of joint pain. I have a rare genetic disorder called Familial Mediterranean Fever. However, I have had seemingly unrelated pain flares (atypical of symptoms) along with a worsening chronic pain for ten years that have left me on disability and unable to work. My emails were complicated. They included mentioning I had a flu that later turned to 'itchy' lungs and joint pain. Then I described symptoms of being freezing cold despite 80-degree weather, itchy lungs, an enlarged lymph node behind my right ear, and low-grade fevers. Then I had inflammation in my lungs and needed to have cough syrup to calm the itching and pain. I emailed my primary care doctor and my rheumatologist. When I saw my primary care doctor at the end of May, she did no tests but gave me allergy medication and nasal spray.
Mid-June, I had a week where the joint pain was too debilitating to sleep, running from the base of my right thumb to the right side at the base of my neck, to vertabrae mid-back connecting through my lower ribs. When I started having left-side lung inflammation while breathing in, I went to urgent care and a rheumatologist made me wait for a long time before telling me to try "swimming" and "massage" due to a Fibromyalgia diagnosis. My doctors are all through one big health system and they are able to access each other's notes. He ended up prescribing Methylprednisolone last minute due a past prescription of Prednisone. It quickly worked to bring the pain down and stop the lung inflammation. The Methylprednisolone was the most effective medication I have ever tried and even helped the chronic pain far more than currently prescribed medications of weak Meloxicam, Colchicine (for the FMF) and Gabapentin.
I visited the Emergency Department once my pain improved because I realized I had also been shivering cold with the lung symptoms since May. My heart was normal and my left lung, where I had the pain, had multiple tiny subsolid nodules. My rapid strep test was negative but the follow-up culture was positive for a small amount of Beta Strep Group C. I was negative for HIV or TB, didn't have a fever, had a normal white blood count and inflammatory markers were normal.
My primary care doctor referred me to someone to look at the nodules in my lungs to make sure they have cleared. She said that it was normal for "anyone to have Strep C" and that it didn't require antibiotics and a nurse said "She probably thinks it's part of your natural flora". I pointed out that all my symptoms started on the same timeline at the beginning of May through mid-June, including 12 pounds of weight loss that had gone unnoticed by doctors, and that the only result so far was the strep. I printed out the email of detailed descriptions of illness and flares and the timeline they were on. I included past rheumatology labs or imaging tests that were positive before becoming a patient there and even made a little summary of history that included recurrent strep and strep before developing my joint flares ten years before.
I am switching to another rheumatologist in the same department soon and messaged that it was urgent for me due to the severity of my last flare-up and the hope that the Methylprednisolone had provided a path toward diagnosis and treatment that will prevent and treat pain. I at least never want to experience such debilitating symptoms again. The appointment was canceled and postponed a week. I tried to point out that my flare was acute pain and not something that was normal for me - I could not rotate to the right on the toilet, sleep for four days, use my right hand, or walk sometimes. The cold causes pain in my hands and feet and it affects my tendons, causing plantar fasciitis to act up. It felt as if most of the right-side joints were affected, along with the base of my big toes and thumbs, and that there was a tightness of connective tissue. My rheumatologist has been dismissive of symptoms for over a year, only stating that the inflammatory markers are normal and that I am fine on current medications. At our consultation, I told her that my cousin on my mom's side has Ankylosing Spondylitis but she put in her notes "mother has lupus" and would not change it when I brought it up. She responded to one email to say I did not have rheumatoid arthritis or Raynaud's disease but I have never suggested that I have any specific disorder - I have only described my symptoms and emailed during acute flares. I don't know why tests are negative for inflammation but it seems like it should be enough that a powerful steroid was effective. A few days into the pack of Methylprednisolone, my joints all started popping like pressure was being released.
I am actually questioning whether I should switch to an entirely new health system based off these experiences. I could swear that there is something that comes up in my chart that is making doctors so lazy, rude, and dismissive. My interpersonal style is a little different due to inattentive ADHD, being autism spectrum. I am also trans and I don't know who has access to this information but receptionists have also become very rude recently.
But my questions are : Is it normal to not be prescribed an antibiotic for a small amount of recovered Strep Group C? Especially with the symptoms like "itchy" throat and yellow mucus in the back of my throat that required cough medicine? Am I crazy in thinking I could have had an infection that went untreated? Could the nodules in my lungs be from an untreated infection? Is Strep C really "part of my natural flora"? Could I have an undiagnosed autoimmune disorder that might be connected with the strep? Could my symptoms be cancer since I have had rapid weight loss and the nodules on the lung or is it illness? Could I really just have a severe allergy? I have been referred to a specialist for it.
Is there a better place in the U.S. to find the answers I need?
Someone please help.
Like
Helpful
HugInterested in more discussions like this? Go to the Chronic Pain Support Group.
Connect
Hello @looking4advice and welcome to Mayo Connect. I am sorry to hear of these difficult symptoms and the lack of answers and/or treatment.
Many of us on Connect have had rare and/or hard to diagnose medical problems and we understand the frustration that goes with this. You really do appear to be actively advocating for yourself and this is great! Keep up the good work and also remember that this might be a long process before you find an answer and treatment plan.
Considering all of the diagnoses you have has any doctor referred you to an infectious disease specialist? If not, this might be a good next step. I would also suggest that you visit a multi-disciplinary medical center like a university medical school or a Mayo facility. Do you live close to either one?
I would also like to invite @gingerw and @mamacita as they are also on the Spectrum and understand how difficult it can be to communicate with health care professionals. Perhaps they can offer suggestions for communicating with doctors.
Will you post again with an update as to how you are doing?
-
Like -
Helpful -
Hug
4 ReactionsHello, @looking for advice, this is Mamacita, from the Adults on the Autism Spectrum discussion site. I have been re covering from a Fibro flare, which had followed two bouts of Shingles and cellulitis. I apologise for not getting with you sooner. I just checked my emails today, and earlier we were on the road.
I feel so bad for you! I totally get the difficulty you have been having with all your various doctors and nurses. It has taken me forever and a day to even halfway understand how to get along with the staff and the doctors.
I have ADHD and Autism, myself. When talking to any of the people involved in my care, I try hard to word things in a way that I convey the facts as simply as possible. For years, I wouldn't tell everything, out of embarrassment. But now, I tell it all, so that they can make the best diagnosis they possibly can.
It sounds like you have been very thorough and provided them with every thing they need to better understand your symptoms. Unfortunately, it does sound to me like they are not taking your case as seriously as they ought to. This has been my experience whenever an illness involves a level of pain. Pain is so subjective, and easy for medical practitioners to dismiss if they believe a patient is just wanting pills.
Is there someone you could take with you when you see the doctor? Many times I ask my spouse to accompany me. I have also been with a friend who has spina bifida among many other challenges. She would have back to back appointments at a University Medical Center. She always said she felt like she got better treatment with me along, because having me was like having a witness.
There are some doctors, unfortunately, who simply do not want to be bothered with complicated patients. I am one of those patients. I have recently "fired" my arthritis specialist for this very reason.
You have every right to be treated with respect and in a timely manner. When you are in severe pain, it should not take a week to be seen. I am not a medical practitioner and I really don't give advice. But having said that, I wonder if you could see some doctors at a University Medical Center? I understand that is an option that many folks make under similar circumstances. Convenience in location is important. But not if you are not getting the help you need.
Please let us know how you are doing. I have to get off here now but I want to check back with you later to see how you are doing. Can we meet up again soon?
Mamacita
-
Like -
Helpful -
Hug
4 ReactionsTeresa, Volunteer Mentor, I could not stop thinking about this dear friend. Throughout the night I would wake up and look at the clock. One more hour passed. Little sleep. And then just as I was having REM sleep and dreaming, the alarm went off. I had a dream about "masking." A common theme amongst those in the Autistic community is being transparent. Taking off the masks we have learned to wear in order to fit in to today's world.
My dream was clearly about masking. We learn what to say and how to present by observing others around us who are Neurotypical. It may help us in the short run, but when dealing with our doctors, it can bite us in the seat of the pants.
Take off the masks. Let's be us.
-
Like -
Helpful -
Hug
4 ReactionsDepending on where you live, I would be happy to accompany you to any of your appointments. I realize that the chances of us living close to each other are slim. But just in case, you could reach me by Facebook messenger. I live in the South. I am one of almost 500 Jane Peterson's on Facebook! I am the only one whose profile starts off with "Adults On The Autism Spectrum"....so, please. Do not hesitate to allow me to assist you in this way if we are anyway at all reasonably close to each other.
Your story and mine are so similar. I really don't want you to have to suffer any more pain than you already have. You are doing a terrific job of seeking answers for this extremely difficult situation. I want to encourage you and let you know that we are all here for you and cheering you on!
We have a saying around here "We are better together."
Love and light sent your way.
Mamacita
-
Like -
Helpful -
Hug
4 Reactions@looking4advice I join @mamacita and @hopeful33250 in welcoming you to Mayo Clinic Connect. I'm sad for the reasons you had to look us up, but hope we can be of service to you. As has been stated, noone deserves to be treated dismissively like it sounds you have. Being on the spectrum, we feel deeper, and harder than most everyone else. In order to survive in a neurotypical world we have earned to deny ourselves (honor our true selves) and say what others want to hear. Add in the challenges you have faced as a trans person, and I totally get it.
Are you in contact with the Dr's or medical teams that assisted you in your trans journey? Can they refer you to sympathetic professionals who can take the symptoms seriously? A gentle reminder that your body has been through a lot and "catching up" with your identity, your immune system has been compromised. Standing up for yourself and insisting on getting help, changing to a new medical team may be your best answer. When the patient is more aware than the drs often the drs and staff feel threatened. But don't give up.
Are you near a major teaching hospital or a Mayo Clinic? Do you have contacts within your community for medical professionals who are supportive (besides being great drs)?
Please come back and talk to us. Tell us what you decide, and let us help you. Truly, we do care.
Ginger
-
Like -
Helpful -
Hug
4 Reactions@mamacita @looking4advice I live on the West Coast and echo the offer to accompany you to appointments.
Ginger
-
Like -
Helpful -
Hug
3 Reactionsto looking for advise. Keep pursuing. You need answers. I feel for you. I am experiencing similar situations and usually leave a doctor's office in tears. I have been suffering with a very painful with extreme swelling of leg foot and toes for over 8 months. Mainly my left foot and leg. It is very hard to walk. I am now diagnosed with pheripheral neuropathy which adds to the symptoms. Was told in a very harsh was that I had lymphodema and needed lymphedoma therapy. I did not even know what lymohedema was. A vein specialist (one of the specialist I was referred to) told me this. I did not have the obvious reason for lymphedema and he never asked. After the 2nd appt when I told him he said I should have had tests done to see what was wrong with y lymph nodes. Obviously he did not make that referral. I contacted my priary care doc and I had a CAT scan. No lymph node problem. The problem is Who knows? Who cares - Only me obviously. I am not getting into the medical issues right now, but the issues with the doctors. I have been told I was old. I am 74 and things fall apart. What I heard was "Too bad" Walk around in extreme pain with a leg and foot that looks hideous and painful to everyones eye. Another orthopedic doctor I was REFERRED to looked at my foot and asked me why I was there. My niece who is young and smart accompanied to both those appointments after I told what I have encountered and she was appalled after seeing it for herself. I am no why near an answer to my problem. One doctor said the neuropathy should not be causing this pain and swelling and this swelling should not be causing this pain. One answer that was pondered was that the swelling was pressing on a nerve. Ok, why the swelling? Yes back issues. Maybe nerve i back compressed show on CAT scan looking for lymph node cancer. My niece will accompany to all appointments and I like others advise you to have some accompany you and bring a note pad and write it down. I had a doctor tell tell one thing in my first appt and something different on the next appt. I had the notes from my patient portal that they write and are show on your computer if you are in their program and yes indeed He saw his down right lie which he so nicely had his nurse type in my chart. I do recommend we all sign up to be able to view our charts. My prayers are with you.
-
Like -
Helpful -
Hug
5 Reactions@mamacita Hey mamacita, I’m so sorry for your illnesses. I was intrigued to know that you had cellulitis. I,too, have had it and you’re the first person I’ve known that could share with me. Can I ask where you had it? I had it in my lower legs and have to be vigilant so I don’t have a recurrence. Wow, mine got so bad I was hospitalized. I wish I knew how I got it.
It sounds to me that you’ve developed a wise plan for communication with the medical professionals - and that isn’t easy sometimes! Anyway, hope you feel better! "".................Karen
-
Like -
Helpful -
Hug
4 Reactions@summertime4, I am so sad to hear of your difficulties with your foot and leg. One of my close friends has Lymphedema, and is treated locally with excellent doctors. She has other physical issues, such as migraines, but is still able to work and maintain her home and family. We live in a fairly small Southern town. We love our city, but if we have anything worse than a cold, we go to the next town over, or to the UAB medical system. There are excellent specialists connected with a reaching hospital.
You are fortunate that you have a family member who can go with you to appointments. I truly believe we have to stand up and advocate for ourselves. That is hard to do by ourselves, when we are sick and hurting. We all need someone to be there for us, in a tight spot.
I take a notebook and pen with me every single time I go to the doctor. I write down what is said and done. I do believe it makes a difference. Those doctors who have integrity pay attention and see that we are serious about our problems. Mayo Clinic Connect is here for you. We are here for you. Please be encouraged and let us know if we can help in any way.
Mamacita
-
Like -
Helpful -
Hug
3 ReactionsMamacita Thank you I don't know if I said that one of the results of the recent CAT scan was moderate degenerative changes in the visual spine. This basically means osteoarthritis of the spine. The scan was to look at the lymph nodes and found this. I did some reading and found that bone spurs "could" be on the spine and hitting a nerve which could cause the foot pain and swelling and neuropathy. I am a long time sufferer of back pain but had it pretty much under control until recently. Two doctors said I should have another MRI of my back and two said "What for" duh. Maybe they will go after this now or maybe not. I see my doctor Wednesday. In the past when I had a doctor's app I would feel encouraged thinking maybe some good would come of it. Anymore I just feel depressed and really don't even want to go. I will go on Wednesday and let you know what my primary care doctor has to say.
-
Like -
Helpful -
Hug
3 Reactions