what to do when treatments don't work and I keep developing new autoimmune conditions

[TiredNerd]

I am new here so I hope I am posting this correctly! I apologize in advance if I am in the wrong place. I am a 43 year old man who is raising 2 kids alone. After battling 10 years with various symptoms such as fatigue, mental drain and memory issues, pain in joints, frequent falling, etc. I was finally diagnosed with Undifferentiated Connective Tissue Disease 5 years ago. This was after 5 years of being told nothing was really wrong even though they couldn't explain the constant fluctuation in my blood workups. After seeing a few specialists (neurologist and rheumatologist) they found out I also had pernicious anemia, and anti-phospholipid syndrome. The rheumatologist started me on Imuran and Plaquinil. After two years with the symptoms not getting better I asked if she could just go to a very aggressive route with chemotherapy like cyclophosphamide because I was tired of living in pain and in bed. After she refused I looked for a new rheumatologist and neurologist.

A year ago I found a great rheumatologist and neurologist who ran a LOT of tests and found out that I also have Chronic Inflammatory Demyelinating Polyneuropathy and autoimmune encephalitis. The doctors both said that the combination of the diseases are damaging my brain, liver, and likely my heart and kidneys; both said aggressive treatment should have been done a while ago! They changed up my treatments to high dose CellCept and Rituxan. So far nothing has changed. I still have severe fatigue, memory keeps getting worse, and even when I force myself to exercise I apparently have exercise intolerance which makes things worse (although if a take a Valium quick enough I can mitigate the stress release from exercise).

To make matters worse, last week they found out I have also developed early stiff person syndrome, granulomatosis with polyangitis, and nail psoriasis. The doctors have been upfront in saying that it will be very difficult to treat because of all the conditions and that even blood work will not be reliable because all of the conditions will cause significant fluctuations.

Fact is, I’m not living… I’m simply surviving which is no way to live. It has taken its toll on my family – despite my best efforts to downplay what is going on. Has anyone else out there had to deal with Multiple Autoimmune Syndrome? Have you had successful treatments?

Thanks in advance!

A very tired nerd

[Brychni]

Although I can't offer any advice about medication I wanted to say that you are probably not alone. I'm fairly new to the forum and have Undifferentiated Inflammatory Arthritis which has taken me a long time to understand. I also have antiphospholipid antibodies (not syndrome) and Raynaud's and during my denial, questions and confusion it has been pointed out by those with experience that there is a lot of overlapping with autoimmune diseases. Be grateful that you are in the system and being seen by specialists: a lot of people have suffered for years with symptoms like yours before being taken seriously by GPs who have dismissed symptoms as depression, attention seeking or 'hormonal' - and then finally being referred.I really hope that you can get on the right meds soon. It must be exhausting and depressing especially with children to look after.

[TiredNerd in reply to Brychni]

Thanks so much for the reply. I actually switch GPs because my first said I could cure everything by going gluten free! I did that for a year and all it did was cost more to get groceries 😁. It doesn’t help that I have ADD and bipolar because it was easy for the docs to say it was all in my head despite my psych doc telling them it wasn’t and the blood work being abnormal! Such is life I guess 😉

[Brychni in reply to TiredNerd]

Well, I do wonder what came first the ADD or the autoimmune diseases...I had rumblings of issues especially with my ribcage and back when I was a child which went largely ignored to the point that I just thought it was a stiff back and I learned to ignore it too. But looking back it did have an impact on lots of things, perhaps only in small ways but enough to influence behaviour, reactions to things, activities etc. for example I found PE difficult even though I was active, I found it hard to 'push myself' the way others did and this was perceived as me being reluctant to take part. I also went through a phase where the pain in my ribcage was horrendous at night which obviously affected my sleep and ability to concentrate which, was perceived as not being very bright etc etc. I reckon it all hangs together.

[TiredNerd in reply to Brychni]

I have often wondered about that myself. Back in the 80's they wouldn't have thought about an autoimmune condition in a child unless it was textbook, not to mention that most of the conditions I have are most prevalent in women. Even my doctor now says that this many conditions are an oddity in men. I told him that he should get together with my other doctors and they could publish a great journal article!

I mentioned to another user (Fruitandnutcase) in a response that I have a genetic condition that prevents the conversion of folic acid. In doing research on that, part of the activated folate's use is the creation of all monoamine neurotransmitters that help with brain development and function. It is linked to the development of ADD/ADHD; I'm guessing that had a lot to do with the psychological conditions I developed. Once I learned I was homozygous for it I had both my kids tested (about 6 years ago) and they too are homozygous so we got them on activated folate as to hopefully prevent them from developing some of the same psychological things. Time will tell.

Thanks again for the replies!

[helixhelix]

OMG!! You have really been given the auto-immune short straw haven’t you. Two diseases is common, three not unusual, and more than that is just awful....

I do hope your specialists work hard to find a good approach for you. Sadly no experience to offer, just some crossed fingers that treatment works.

[springcross]

Hi TiredNerd and welcome to the forum. I can't be of any help I'm afraid but I wanted to say that I'm really sorry to hear all you have going on in your life, particularly with two young children, it sounds like an abolute nightmare. Do you have help from family/friends? I really feel for you - it must be so difficult.

[Soundofmusic52]

I hold my hands up to you my what you’ve been through in your life is amazing and bringing children up what can I say I admire your determination hope you get your life back to some normality you deserve it stay safe 👏👏

[Sheila_G]

Ooh! Gosh. So sorry you have been given all this to deal with. I can't offer any advice but I do hope you get sorted soon. Life must be very difficult for you with bringing up two children on your own. Lots of luck with your treatment

[Nessa28]

Hi I’ve read your post , and I’m at a loss to say anything . Firstly though you are truly an amazing person you’re fighting your personal health battle and from the sound of it , it really has been uphill . I understand the being fobbed off with the “in the mind or your depressed “, at times I started to believe it . No one wants to feel rubbish we all crave the day we can get out of bed and actually move , rather than take 2-3 hours to get enough movement to start your day , but you’re doing this ,pushing through all of this to raise your children and that alone ,being totally healthy is a challenge . I applaud you I really do and although I can’t offer you any advice I can offer my support, I know that this lovely forum will allow you to sound off . Try not to be hard on yourself but vent away we’re all here to listen . 🤗

[Biofreak]

Hello Tired. Nerd. You have been and are going through so much. The fact that you have been able to get yourself up and look after 2 kids all these years with an increasing list of chronic conditions proves how strong and determined you are. It doesn't sound as if you get much practical help. How old are your children now? I wouldn't know where to start in giving you any advice regarding your conditions because there are so many and all sounds complex. You sound like you now have some decent medical attention but I do think that your life could be made easier if you had some more practical support at home so that you could take some time to look after yourself for a change. My best wishes in finding the help and support you need. Please let us know how you go on.

[TiredNerd in reply to Biofreak]

Thanks for the reply!!! My kids are 12 and 16 respectively. Such "fun" ages...lol. I can tell they are very concerned and are ALWAYS asking how I am doing or what's wrong. They say I don't smile or laugh anymore like I used too and I'm always laying down, or that I never look happy (apparently I look like I am in pain or upset). I am quite concerned about that because I've read that kids that are in psychologically abusive homes learn to read facial expressions and are always wondering/asking "what's wrong?" I've talked to them at a high level about what is going on (the fatigue, pain, etc.) and why I may look and/or act they way I do; hopefully it conveys to them that I am not angry and that they have done nothing wrong!

Again, thanks for the reply!

[Biofreak in reply to TiredNerd]

Your kids will not be damaged by your illness but they will be concerned about you because you're their Dad and they care about you so I'm glad you are honest with them. Any practical help they can give you to make your life easier is good so I hope you let them help around the house. Your pernicious anemia will cause great fatigue and I imagine your B12 level is low which can cause a lot of fatigue and nervous system issues. You haven't mentioned your B12 level. Is it low and do you get B12 injections from your Dr if it is low?.

[TiredNerd in reply to Biofreak]

Thanks for the reply! My B12 levels are actually off the chart because I take daily supplements plus monthly injections for exactly the reason you mentioned. That is the one blood level result that has remained constant 😉. It’s a good thing it’s water soluble, otherwise being 25,000% above RDA might be yet another problem 😂

[Hidden]

I can only agree with every reply here . I can’t add anything but I do agree you are a fighter and a very strong person. Please keep in touch as we can only offer moral support x

[Fruitandnutcase]

I feel for you TiredNerd. You are far too young to be living like you are.

All I can say as a very outside chance is - have you had your thyroid thoroughly checked out?

You need to have TSH, T3, T4, ferritin, folate, vitamins D, B12, folates, ferritin and antibodies tested. Having a few autoimmune conditions myself including inflammatory arthritis and Graves’ disease I know they hunt in packs and your thyroid affects every single part of your body.

Some of your symptom ms - feeling fatigued, your memory are being affected and also the fact that exercise isn’t helping. It could well be nothing this do with your thyroid but as you have tried so many other things and aren’t getting anywhere it might be worth it.

If your doctor isn’t keen to test those things (and a lot of doctors aren’t) then you could always do what a lot of people end up doing and buy yourself a Medichecks home finger prick Thyroid 11 blood test to see if that throws anything and if it does then go from there, if it doesn’t then you’ve tried and can look for other possibilities.

[TiredNerd in reply to Fruitandnutcase]

Thanks for the reply! I did have the full Thyroid panel run and sometimes the numbers are high, sometimes they are low, but usually they are normal. That is part of the "fun" of my labs... you never know what you are going to get from month to month ;-). My insurance company loves me because about every 2 months I have to have a full workup which is about 34 vials of blood (actually tied the draw record for the lab - so that’s something to be proud of...lol)

As for the vitamins, I have to take a D supplement even though the numbers are normal, and I have a genetic condition (homozygous MTHFR a1298c) that prevents me from properly converting folic acid to its activated form so I have to take a special supplement for that as well.

We will see what happens, but again I appreciate your response and insight!

[Mmrr]

I've nothing to add to the responses already given other than to say you are doing an amazing job bringing up 2 children. My best wishes to you.

[Hidden]

Sending best wishes as this is a mountain you are climbing and you do need to come up for air sometimes so good in finding this forum and reaching out 😘

[Hidden]

Like everyone else, I think you're doing an amazing job looking after two children with all those illnesses attacking you. It seems you may have found some better doctors now. I can only add that when you get the right treatments, I hope you are among the lucky sufferers who see a big improvement quite soon. Sending you very best wishes.

[TiredNerd]

I just want to thank everyone for their very kind words! I was told by my docs that I should chat with support groups since it is hard for people (even family) to understand. So I thought I would give this a try. You all are great and I just want to let you know how much I appreciate it!

[Hidden]

Forums like these are a great support to vent, to laugh or just read. Some days a lot, some days or weeks not much. It is just there when needed and not always about your diagnosis too😀

[RAjos131950]

Oh you poor man ive no advice sorry but you seem very determined which us good bless you xx

[Paisley58]

Welcome TiredNerd, you are in the right place as I have found this to be a very happy and supportive space.

I don't suffer with any of the above but I just wanted to say that I hope the team you have now will do their very best for you. I am praying that things improve soon and I am sending you lots of love and light.x