I just want to get back to living!!

[Kcal]

Almost 3 years ago, when I was 32, I suddenly started losing weight at an excessive rate with no explanation. I dropped from 130 lbs to around 90 lbs in a matter of just under a month and continued to loose weight over the next 6 months with my lowest weight hitting 72 lbs. I was sent from one doctor to the next over the course of the first year and a half and the initial reaction was that it had to be some form of cancer. New symptom occurred of swollen lymph nodes prompted removal of lymph node to check for lymphoma, it was negative. New symptom occurred of high RBC, prompted testing for blood cancer/or disease, results were negative. At this point I have developed chronic fatigue and all over joint pain. New symptom occurred, excessively bad mentrual cycles, prompted hysterectomy. An upper and lower GI was eventually done and ruled out any GI abnormalities. New symptom occurred, large amounts of protein in urine, prompted a kidney biopsy, results showed glomurli involvement, not filtering properly. The nephrologist at this point with his findings and all symptoms refers me to a rheumatologist. The rheumatologist from the first visit states that I am displaying many symptoms of an autoimmune disease and runs several test including an ANA.This was Aug 2018. Based on my results he rules out RA and says my vitamin D is extremely low and ANA is negative so he would like to continue to observe for more symptoms to appear. The fatigue and joint pain continue, and in Oct 2018 he diagnoses me with polyaropothy arthritis, fibromyalgia, vit D deficiency and possible connective tissue disease. He prescribes medication for these symptoms. In May 2019 I have an episode in which my hair just started breaking off. He continues the treatment I’m on and no new diagnosis. In Sept 2019 I have another bout with my hair breaking off. Treatment and diagnosis stay the same. Fast forward to Jan 17, I have an appointment because I have a horrible rash that has broke out across my face. They decide to run new lab work. Today Feb 4 I had a follow up for those test, I now have a rash across my face again and have spent the last week in bed due to severe pain and fatigue. The results, positive ANA, which I was thinking that now we might be able to get some answers and plan to get me back to feeling better. I was wrong, no new diagnosis and medication stays the same with the recombination to “become close friends with sunblock “ because I have photosensitive. I also developed Raynauds just under a year after initial symptom and developed neuropathy in hands and feet just last year. At this point I’m not sure if I should seek out another opinion or if I should just throw my hands up. I understand autoimmune disease are hard to diagnose but I feel like I don’t have much more answers now than I did in the beginning. I have so many questions and no definitive diagnosis just “the symptoms point to an autoimmune disease “ . What’s causing this? What’s the best things to do for it? How do I prevent more symptoms from occurring? How do I minimize the symptoms that have already occurred? It’s so frustrating to feel awful all the time and not be able to get definitive answers and proper treatment for what’s happening to me. Is there anyone that can give me any, even small amount of advice? I just want to get back to living!!

[F1zz]

I'm so sorry you're having such an awful time. Has the Dr given u anything for when u r in a flare? Rest days help keep mine down, I have to schedule them in

[Kcal in reply to F1zz]

He has not at this point. I have spent the last week in bed. I am actually waiting for an appointment with another rheumatologist for a second opinion on my treatment.

[MissusTee]

I think that you would be better off looking for a rheumatologist that specialises in lupus, or to get sent to a hospital where they have specialists. You don't have to go to the rheumatologist that your GP sends you to. It's worth doing the research.

[Kcal in reply to MissusTee]

Thank you. My primary care doctor in combination with my Nephrologist are the ones who gave me a referral so that I could see a rheumatologist because they suspected Lupus almost 2 years ago now. I actually called my primary care doc after this last visit and explained everything, he was to happy to give me a referral to see another rheumatologist for a second opinion. I am waiting on the call with my appointment date. He could not believe with all of my continuous symptoms throughout the last 3 years and a positive ANA test that I have not received a diagnosis yet.

My biggest concern is the kidney involvement. I have had continuous protenuria for more than 2 years now and the nephrologist has been keeping a close eye on it and suspected that it’s manifestation was due to an autoimmune disease 2 years ago. Unfortunately the rheumatologist I have been seeing is not as thorough and hasn’t at this point offered much to my treatment.

I had labs done on the 17th of January that were ordered by a new nurse practitioner to the office. She expressed to me that she was concerned with the manifestation of several new symptoms over the last year and there were some labs that had not been checked since Aug of 2018, one included my Vit D level even though my Vit D leave at last check in Aug of 2018 was only a 4. The results of those lab tes prompted a call from the NP to schedule an appointment for me to come back on the 4th of this month to have a visit with here and the Dr. my ANA is positive and my Vit D level is only 11.

The doctor come in the room and explained that he was doubling the dose of one of my medication and for me to come back in 3 months. The NP had to tell him about my ANA results. He had not looked at my lab work, he did not discuss anything with me so I still don’t know what any of my lab work means and he stuck with his course of doubling my medication and seeing me in 3 months. This is what prompted me to reach out to my primary doctor to get a referral to another rheumatologist for a second look at my treatment and hopefully a definitive diagnosis. I was not at all comfortable with the fact that although I was told my Vit D was being check it had not been in more than a year. I also was not at all comfortable with the doctor making the decision to double the dose on a medication, that has a liver warning, before he ever walked in the room as he, himself, has not seen me in more than a year and not only had he not talked to me about how I’ve been feeling, he made the decision and he had not even looked at my lab work. I don’t believe that a proper decision for treatment can be made without looking at the combination of my lab work and symptoms. The NP had to call me back to let me know that my Vit D level was extremely low and that she was calling in a prescription because this was not mentioned in my appointment.

It has been an extremely frustrating and long few years.

[MissusTee in reply to Kcal]

It sounds awful. Might be worth getting copies of all of your results, and keeping a file so that you can monitor any changes or declines/improvements. Interestingly, low Vit D is very commonly seen in autoimmune conditions, I had this myself. Do you know what antibodies you are actually positive for, as ANA covers a wide spectrum.

[Kcal in reply to MissusTee]

I have actually started putting together a file of my medical records this week, I have requested copies of anything I do not have. I probably should have done this sooner. Unfortunately, all I know about my ANA is that it is positive, the doctor did not actually discuss my labs with me.

[MissusTee in reply to Kcal]

ANA covers a large range of autoimmune conditions, so without knowing which one it is, it's hard to tell what yours might point to, so if you find out it might indicate what you're looking at.

[Kcal]

I’m not certain if this means anything but I found out today the my ANA pattern is ”nuclear, speckled”. Can anyone tell me what if anything that means?

[Kcal]

I’m not certain if this means anything but I found out today the my ANA pattern is ”nuclear, speckled”. Can anyone tell me what if anything that means?

[Hidden]

Kcal, I am so sorry for what you are going through. Though we are mostly experiencing the same, our bodies handle things slightly differently. You said you lost 40lbs your first month? That has got to be so hard on your body and all of your organs. I started off at 132 and have put on weight with this. I have worked hard at get my health back and my weight back. It’s along road. Though it’s usually fun having a hiking partner, I’d rather no one ever had to go down this road. All my best to yiu🙏.

[Kcal in reply to Hidden]

Thank you! Yes, it is definitely hard. At my lowest weight of 72 lbs I could barely get out of bed I was absolutely physically and mentally exhausted. I am still very fatigued all the time but definitely doing better than I was, as I have managed to get my weight up to 89 lbs and maintain it for several months now. I believe the right doctor and the right course of treatment will be all the difference. All my best to you through your journey!!!!

[Hidden in reply to Kcal]

Amen, and to you as well. You must be rail thin!! I’m 5’8” and would be dead at 89lbs! I wish you the best.🙏