Need some help – terrible symptoms baffling everybody.

[Nunezhall]

I am new here and looking for help and answers. Thanks in advance for any help you can give. I’ve not been diagnosed with Lupus but I do wonder if it's the cause of all my issues. I have myriad life altering symptoms and I'm desperately trying to get to my root cause. I’ve been really quite sick since I was a teenager, when chronic fatigue and depression set in. I am 41 now and have a number of illnesses, most of them autoimmune:

•Hashimoto's hypothyroidism

•Psoriasis

•Likely autoimmune atrophic gastritis (under investigation)

•Pernicious anaemia (low B12)

•Rapid cycling type 1 bipolar disorder with psychosis that hasn't responded to treatment with over 20 different psychiatric drugs

•Migraine (three a week)

•Chronic fatigue syndrome

•Hypertension

•Fatty liver

•Metabolic syndrome

•Familial hypercholesterolemia

•Obesity

•Investigated for celiac 3 times but not detected

I have many other symptoms as yet unattributed:

•Rash on eyebrows and cheeks, although it is mostly down the sides of my nose and not under my eyes

•Circular rash on chest

•Flaky rash on scalp

•Poor balance

•Poor positional awareness

•Clumsiness

•Weakness and muscle loss

•Foggy thinking

•Very poor memory

•Confusion (sometimes debilitating)

•Occasional panting / shortness of breath

•Anxiety and paranoia

•Persecution complex

•Restless legs

•Tachycardia and palpitations

•Sleep disturbances

•Debilitating intermittent ankle pain

•Aches in every joint and muscle

•Muscle stiffness

•Mouth ulcers

•Dry eyes

•Cold extremities

•Poor circulation

•Pins and needles

•Pain in calf muscles when walking more than 200 yards

•Total hair loss on lower legs

•Constipation / diarrhoea

•Blood in stools

•Pale complexion

•Moon face

While there are a lot of conditions and symptoms it's the neuropsychiatric issues that have become completely debilitating. I had to work part time for 4 years until a year ago when I was forced to stop work entirely. I've always been sick since childhood but in the last 5 years it has become unbearable and has cost me everything.

The strange thing is there were periods when every symptom has gone into complete remission simultaneously. Looking back this coincides with when I go on a low carb diet to lose weight. In January I started the Autoimmune Protocol diet to try and control the antibodies that had caused Hashimoto's and yet again every symptom disappeared within ten days! I'm currently in complete remission and feeling better than I have in 10 years - I've even gone back to work.

I am well enough to actually start researching what's wrong with me (when sick I can't read) and I am trying to establish if the above symptoms could be neuropsychiatric systemic lupus erythematosus (SLE)?

I'd love to hear from you. Are there and tests I can ask for? I had a positive ANA screen (speckled pattern) but this tested negative a week ago since starting the diet. My doctors are sadly quite clueless.

[Rubylu]

Oh poor you, what s distressing amount of problems to cope with, especially the np ones as you say. Are you under the care of a rheumatologist? If not then maybe you could ask to be referred? Also, have you kept a diary of symptoms? This can be helpful when trying to demonstrate any patterns to your docs. If all those np drugs have not controlled your bipolar symptoms then ask if you could be screened more fully for autoimmune involvement and maybe try immunosuppressive therapy. My understanding is that Hashimotos depression responds to steroids, so have you ever been given them? And if so, did your other symptoms respond too?

Your list is very coherent and when written down like that does look like an autoimmune cause could at least be considered. Show your docs the list as it stands.

I hope your docs are willing to dig deeper for you and that you find clarity in their answers.

Keep us informed. Take care.

[Nunezhall in reply to Rubylu]

Thank you so much for your reply. My symptoms are really terribly confusing. Sadly once I was labelled with bipolar I feel my doctors have been very dismissive of any complaints I have about other symptoms - I was basically told I have psychiatric symptoms, I'm obese and I need thyroid hormone so lose weight and take your cocktail of pills and stop bothering us

I had a blood panel done for arthritis but as it was negative I never got referred. I feel like I've been abandoned to manage this on my own. It's great to hear from someone who understands. I will get private health with my new employer so I will pursue a doctor of integrative functional medicine and maybe a rheumatologist, although with so symptoms currently presenting I'm not sure. At least my psychiatrist has come round to the notion that I've been misdiagnosed and has said she'll reverse the bipolar diagnosis if I don't have symptoms for another year or so.

[EOLHPC]

Hello nunezhall & welcome

First off: 👍👍👍👍👍 I think you're amazing...for ages you've been having a dreadful time, and you still are managing a lot of persistent issues, but you've helped yourself feel well enough to proactively figure out possible underlying causes. 👏👏👏👏

Am sure you'll get more great replies, but have you visited the Lupus UK website? It's FULL of excellent info about Lupus...my feeling is: this is probably one of the best websites for general official understanding of all aspects of lupus:

Signs & symptoms

Diagnosis

Treatment

Overlapping conditions

And lots more

Here is a link....I've chosen the link to the symptoms info cause lupus uk presents it so cleverly that comparing your list to the websites can be easy...but the website explains details of tests too:

lupusuk.org.uk/the-symptoms/

neuropsychiatric systemic lupus erythematosus (SLE), the type of lupus you're most interested in, is a very specialist type. I'm affected by complex persistent Neuro-cerebral symptoms so am vvvv much feeling for you. Fortunately my daily oral combined therapy lupus meds help me a lot

Wishing you every best wish

🍀🍀🍀🍀 coco

[Nunezhall in reply to EOLHPC]

Thank you so much. I will read everything I can find on the website - no one is going to fix me except me so knowledge is key.

[EOLHPC in reply to Nunezhall]

Am so glad you found us....this is a WONDERFUL forum (better than any I know) and has made all Rhys diff to me for 6 years. I feel certain you'll crack this: you are so self-aware and open minded + you have your psych on your side + you have experience working the heAlthea system

Please keep us posted

🍀😘🍀😘🍀😘

[CRYSTAL11]

You are doing brilliant. It's not at all easy when you have so many different symptoms. One specialist only works with the one problem so it's trying to find a way to fit them all together. Just a thought your diet seems to play a really big part of your problems have you tried to do a food and mood diary. Don't know but it feels like some sort of allergy

I have most of what you have and really haven't found a reason for them. I have altered my diet a lot. No dairy. No gluten. But nothing seems to work. Good luck on getting to the bottom of it. With your determination I think you will. Remember you know your body so much better than any dr or specialist.

[PMRpro]

You say you have been investigated for coeliac and it wasn't found - but the vast majority of those symptoms appear on a coeliac symptoms list. The fact that cutting carbs is also very suggestive - that was how I worked out it was a wheat allergy that caused a rash I had - it only appeared after holidays in Italy when I went off the low carb diet I was using for weight loss. Did you have 'scopes done or was it just blood tests they did?

I was to have a skin biopsy to see if it might dermatitis herpetiformis but the dermy was just rude - no-one had told me I needed to eat gluten for 2 months beforehand! But the local coeliac specialist said that since the only thing that manages it is diet and I was managing that anyway there wasn't much point doing the 'scope, the only difference having a label would make was getting certain foods supplied on prescription. Most of them are so unpalatable I decided it wasn't worth the hassle!

This is a good link

coeliac.org.uk/coeliac-dise...

and if you look at the link from the left side of the first page to Associated conditions and complications you'll see it includes a lot of the other things you have mentioned.

And this link

celiac.org/celiac-disease/u...

mentions "Celiac Disease Mental Health. ... Initially there may be a misdiagnosis of psychiatric illness due to some of the neurological and psychiatric symptoms that can be seen in untreated disease. "

This is a bit heavier:

ncbi.nlm.nih.gov/pmc/articl...

These

Cold extremities

•Poor circulation

•Pins and needles

•Pain in calf muscles when walking more than 200 yards

•Total hair loss on lower legs

are all suggestive of poor circulation in your legs, especially the pain in the calf muscles but almost all the symptoms you list point very firmly towards an autoimmune disorder that has been left to run riot!

But if you can manage it all by cutting gluten - I'd go for that!

[Nunezhall in reply to PMRpro]

I went gf and started to feel better. I then went dairy, grain, nightshade, soy, legume, nut, egg, soy, sugar and additive free and felt incredible. I am keeping a food journal and will slowly start reintroducing foods and look for symptoms. I could well have coeliac but it will never be detected as I refuse to touch gluten again. However, I'm sure there is more to this than just coeliac. I will keep you posted.

[PMRpro in reply to Nunezhall]

My granddaughter has severe brittle asthma - the only thing keeping her alive was high dose steroids. She went veggie out of conviction about a year or so ago and then a few months later decided to go vegan. From barely able to manage school for a half day even when mum dropped her off and picked her up, she is now at college full time, commuting for an hour each way, has lost weight, needs less steroids and is full of beans, There is a lot CLAIMED for curing things with diet - there I am a bit sceptical but you can certainly improve things a lot.

Looking forward to hearing how you get on.

[Cann]

Sounds like I was several years ago - until I sought complementary help and non-invasive tests of meridians and organ balance.

My body was completely out of balance and it took a long time to rebalance to the point where I am today using good diet, exercise, plenty of rest, emotional techniques and relaxation techniques to mention just a few.

Due to trauma, toxicity and too much invasive conventional treatment including dental and probably being more sensitive than the average person, I became seriously ill and I still have to be careful - I suspect once having been there the body remembers and doesn't allow me to abuse it - I trusted conventional treatment, but not so now.

[Paul_Howard Partner LUPUS UK]

Hi Nunezhall ,

I'm sorry to hear that you are struggling with so many symptoms and do not have a satisfactory diagnosis and treatment plan.

Has your GP considered referring you to a specialist following your positive ANA and symptoms? A good start would be to get a referral to a rheumatologist who has a specialist interest in lupus. They would most likely take responsibility for your care, but due to your range of symptoms, additional referrals to other specialities are likely to be needed too.

There are other blood tests used in the diagnosis of lupus. You can learn more about these in our factsheet here - lupusuk.org.uk/wp-content/u...

[Nunezhall in reply to Paul_Howard]

Thank you for your thoughtful reply. Sadly my GP didn't act on my blood tests which were performed privately in 2013 but I only discovered in 2016 when I requested a copy of my notes. My GP repeated a couple of the ANA tests a few weeks ago, including celiac and RA but they were negative so changing my diet has had a direct affect on this. I am now taking high dose cabalamin (B12) as pernicious anaemia was suspected back in 2013 but this was also not acted on. My levels are now optimal. My GP has refused further referrals as their own tests have not revealed anything so treatment is not indicted under NICE guidelines. I will have private health soon so I am hopeful to be able to get referral to a doctor of integrative functional medicine to see if we can piece all this together.

[Paul_Howard Partner LUPUS UK in reply to Nunezhall]

Perhaps you could look at changing to a different GP? Or if you are getting private health soon, you could seek a referral to a rheumatologist with a specialist interest in lupus? If you let me know whereabouts in the country you are I can provide you with information about any we know near your area.

Please take caution with practitioners of integrative functional medicine. There is no clinical evidence that their therapies are safe or effective.

[Nunezhall in reply to Paul_Howard]

I live in Central London so I would imagine there are plenty of doctors to choose from. Would a rheumatologist be able to piece all of my symptoms together? I particularly need to find someone who understands the horrific neurological and neuropsychiatric issues I've struggled with as they've been the most life changing. My psychiatrist just isn't qualified to deal with it all.

[Paul_Howard Partner LUPUS UK in reply to Nunezhall]

Hi Nunezhall ,

Rheumatologists are usually the primary specialists for people with lupus, though you may also need to be seen by neurology. If you will have private care, the main private clinic for lupus is The London Lupus Centre at London Bridge Hospital - londonlupuscentre.co.uk/

Many of the consultants here also have NHS clinics at different London hospitals such as Guys & St Thomas', UCLH and St George's.

[4373]

Wow! My whole being goes out to you with many hugs. We do have some similarities, but mine are not as numerous or severe. All my life I've had allergic bronchial asthma which was life threatening. In my late sixties I got fed up with the docs and drugs and started doing research using myself as a Guina Pig. One doctor almost killed me, but the blessing is it led me to a GREAT doc. She supported my withdrawal from drugs, yet insisted on certain protocols when things became life threatening. Today, at age 73, no drugs for six years and no asthma attacks. BUT new items have appeared: flaky, itchy rash over and in eyebrow. One doc, not board certified in dermatology, said I had skin cancer and had a big jerk ego. I left him and sought the opinion of two board certified derms who both said I have never had skin cancer in my eyebrows. Started using coconut oil or Badger organic lotions/oils and all is well. Break out with a small amount of itchy hives over chest and shoulders, but seem to be in remission when I cut way down on animal products. Used to have muscle aches which would move all over my body. Doc prescribed magnesium and I am fine. Used to have a dull, deep ache in left forearm, but it has gone away. All of this stuff, with me and we are all different, seems to relate to my diet and what I put on my skin. Skin is the largest body organ and yet we coat it with poisons. Even baby shampoo is toxic! The book which got me started was "Eat To Live, Not Live To Eat." This book is very informative and was written by a doc. My titer score is/was 1:80 which could mean Sjorgrens or not. I decided that I'm having such good results with diet and that it is obvious that the docs don't know what to do that I am avoiding any medical freight train. By the way, my doc cannot believe my asthma turn around. She says this every time I go to see her as does the staff. Most patients would have been in ER. Blessings come in strange ways. My only suggestion to you is LISTEN, LISTEN to your body. Don't ignore the slightest messages and remember that vitamins, meds all have side effects! I do have severe insomnia so am experimenting with a higher carb diet and based on flimsy evidence seems to be working. I have ADD so am an opposite reactor to many drugs. Currently, and for the last six years, I am totally drug free. Thanks for listening and I hope this gives you a little insight of what might be possible.