Long Term Mystery Illnesses

Allergies, blood and immune system
1

I'd like to hear about other people's journeys with long term chronic illnesses that defy diagnosis. Let's compare notes, learn from each other, and give one another support. My mystery illness has been ongoing for nearly 30 years now. Only last year did they begin to diagnose some of it.. hashimotos hypothyroidism ,(no antibodies, dx by biopsy), anemia, oral allergy syndrome (can't eat most plant-based food), idiopathic angioedema, possible celiac, moderate esophageal dysmotility, allergy based problems, vocal cord dysfunction, fibromyalgia, idiopathic hypersomnia, mthfr double mutation, low igg, chronic Vit d deficiency and a partridge in a pear tree. still trying to figure out weaknes and pain in upper limbs and lower back, occasional collapsing on exercise, memory problems, brain fog, occasional word related issues, occasional crippling fatigue, tired all the time, falling, toe and rib dislocations, muscle spasms, chronic tendonitis. What is your story? How are you feeling about it all? How is life?

Jen

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Hi Jen,

Wow, sounds like you're dealing with a lot so I want to start by saying i'm sorry you're going through all of this. And thank you for sharing with us.  It's tough.  I remember going to the doctor's office and being shoo'd out and told i have carpal tunner and allergies.  My doctor was so rude! I was so p*ssed at her for talking down to me when I would tell her how much my wrists hurt. her reponse was "LIKE I SAID, i have the same problem." [i should've reported her].  Anyways, somehow i made my way to the rheumatoligist and he finally semi- diagnosed me with a "possible" combination of many different types of AI conditions, LUPUS/MYOSITIS/DERMAMYOSITIS/MCCD/OVERLAPDISEASE/maybe RA but my tests were neg.  Then followed the different combinations of antiinflammitory medicine that made me so nauseas and caused major acid reflux...meanwhile i was getting weaker and weaker and super skinny.  My fingers would curl up becuase i was suffering from arthritis and inflammation.  I rememebr my coworkers would think i was so weird becuase they would come over to high five and I would just stare at them not knowing how to explain that I didn't want to high five them because it hurt so bad. I would come home from my 9 hour day at work from standing in the bank and cry about my swollen feet and how bad they hurt and my mom would just tell me ...'oh i remember when i came home after my first stay at the bank' but i knew i had arthritis in my feet..it hurt so bad. but the emotional and psychological pain cut much deeper than anything else. I tried to many different things and nothing would help. Etodolac, prednisone, then the doctor offered my cellcept,methotrexcate, and ivig.  some i used others i passed on.  its been up and down over the past five years.  sometimes im so weak i can hardly put my clothes on and get in and out of cars. then eventually im moving around with ease.  i try to study myself and take notes about what causes the flares but its so limited because i know through my life it may always be a new trigger the next flare.  I've played with different diets- paleo, mostly, which seems to work really well for me but sometimes i struggle keeping to it.  I've mostly cut out bread not which seems to help. I went through a flare a few months back and now I think i'm finally ready to go back to the gym. I'm pretty excited about that idea.  I just want to rest and recover.  thanks for sharing.

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hey Jen, that looks like the story of my life sweetie. Not any longer though as I am currently symptom free and in the care of an amazing specialist. You need to get to see the right kind of doctor and that is an uphill struggle! Seeing so many posts on here tonight from people in similar situations to me.

There are so many auto immune disorders.

They all have overlapping symptoms. I had all the symptoms you describe plus others. It was a major struggle to get diagnosed but once I saw a rheumatologist things started to come together. She referred me onto an immunologist and hey presto! Suddenly I had a diagnosis and everything made sense. No mystery any more. 

The problem is there is no single blood test for a lot of these disorders and that's why a lot of people get stuck. You need to see the right kind of doc who will go through a history of symptoms with you and look at specific kinds of testing your gp can't do. 

In my case, I saw a doctor at The Royal London hospital and that's where I was diagnosed. There are other places around the country where you can get help. Message me for more info if you like. best wishes 

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What process did you go through once symptoms started? How did they progress? I really made the rounds..neurology, orthopedics, pain specialist, rheumatologist, gastroenterology, opthalmology, hematology, er visits, etc. Finally ended up back at allergy 4th time) and they are finally starting to figure things out. All this started (and gathering symptoms over time) from when I was 19. I'm 48 now. More than half my life!

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well yes it was a struggle. I was ill from about age 34 and kept being fobbed off with the old 'are you stressed line'. But I developed joint pain and was so tired I couldn't stay awake! I also lost my voice, was off work for 6 months. 

When I got joint pain I finally went to my really great gp....some of them weren't so great....and she referred me to a rheumatologist. She listened, took a history. Did tests. Confirmed I didn't have ra or anything else she could identify. But she had a feeling I had an inflammatory condition underlying all of this. 

Was referred then to a bowel doc. He said IBS. Which I don't have! Was referred to an oral immunologist because she was also querying Sjogren's. In discussion with her about symptoms a moment of clarity and she said 'I think you may have Behcet's syndrome'. Had no idea what it was. She sent me away with a follow up appointment and a contact number for the helpline. I called them. They were great. Went back to gp and asked for referral to an immunologist at St Barts and it took a year and a half then to diagnose. Long haul but worth it. x

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Isn't it funny... if you're in construction.. it's a hammer nail issue.. if you're gi, if you're a GP it's stress, fat, or diabetes.... it sounds like you really went through the ringer. So glad things are better now. Thanks for chiming in!

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If you're a GI it's IBS. Autocorrect slays me.

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just read your posts again. I had this as a child. I went into remission for a long time. Came back later. I have had this most of my life too. It's so galling. So long without diagnosis. 

The problem is most of the docs you see are unable to diagnose these disorders. The symptoms are so wide and overlapping. I don't know where you are in the country Jen but if you want to pm me a general location....a county is fine....I may be able to guide you on where to go next for proper diagnosis and treatment. I am London based but get treatment in Cambridge. 

And by the way....lower back pain. Oh god. So much of it. And upper back pain and leg and breast pain....you name it! 

 

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I am actually in the us. My awesome immunologist actually acknowledged my condition was complex and referred me to the best allergy and immunology hospital in the country.. national Jewish medical center in Colorado. I flew up there last month for a week and a half of intense diagnostics. Not all results are back yet. They game me some other tests to pursue back home. Looks like I'm finally on the road. I strongly suspect the thigh, upper arms and lower back/hip pain may be signs of osteomylacia.. making the Vit d deficiency a number 1 priority.

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Hi Jen, could you enlighten me as to your experiences with Oral Allergy syndrome. I have a lot going on, and one of the things that I experience is regularly feeling like my tongue is made of sandpaper. there is usually enough saliva during the day, but at night, my mouth gets incredibly dry if I sleep with my mouth open in particular. The sensation that I get is that my tongue is rough and leathery.

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Claudia.. I really feel for you. I agree the harassment and dismissiveness are the worst part of having a long term mystery illness. I left my last gp after he said my throat swelling was just fat. Didn't evaluate it. Didn't touch it. Didn't come within 5 feet of me. Didn't listen. Even though I had hypothyroid just diagnosed. Turns out I had a moderate goiter and angioedema. Another doctor refused to prescribe provigil (a safe, nonadditive medication to help people with hypersomnolence stay awake. This despite showing her my diagnosis (it's a lifelong condition which ebbs and flares) and desire telling her that the day before I fell asleep *29 times* at the wheel on the way to work despite 1400 mg of caffeine. She wanted me to get another sleep study first and told me to drink more coffee!

A prominent muscle specialist at a very well regarded facility didn't even examine me. He said ,"I can tell you right now it's going to be a somatic diagnosis. You're a woman who has had trauma in your past, you have been to see a ton of doctors, none of them found anything, and you have too many symptoms across too many systems. Nothing causes that.

I told the gp I just left that I was going to take a break from doctors right now. He said, I think that's a great idea. Focus on relaxing and enjoying what you have. I think not focusing on illness will be good for you. Use this time to focus on eating healthy and getting some exercise. (Despite already being told I had angioedema of face and abdomen and immune deficiency). Since then they discovered anemia, stopped lookihav, probable CVID an and probable celiac's.

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Whoops.. trying to fix the bottom paragraph n hit the wrong button!

So, should I have stopped looking? Just given up? Probably not if I don't want to keep getting sicker.

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I don't get dry mouth. And I also have vocal cord dysfunction, and asthma but this is how it manifests for me. My allergy food tests are largely normal. My environmental allergy list is huge. Anything can happen.. lesions, blisters, eye, nose, throat, skin, gastric symptoms. Allergies are systemic so they can act out in a lot of ways. Below is a sampling of mine....

I eat pepper. Within 30 minutes I have eye conjunctivitis really bad.. light burns, eyes water a lot and the eye and inner tissue of the eyelid get red, the inner tissue swells, and my eyes starting getting this mucous stuff in them. Sticky, painful, burning mess. Sometimes it's so severe I can't keep my eyes open. Goes away in around 24 hrs.

Peaches.. throat swells up and I get asthma

Apples .. skin hangs down from the roof of my mouth and tongue tip and roof of mouth are red, swollen

Rum.. makes stomach feel like I poured acid in, mid back hurts very bad, very hot.

Vit d. .. mouth and upper throat start to burn and itch and swell

Kale.. right side of face and throat swell

Many things cause massive abdomen swelling also.. but they think it may be caused by celiacs. I also get hives and am not sure what causes it.

Most people can eat foods in the same plant families as their environmental allergies reside even with pas, as long as they cook it first. But I am proof it doesn't always work that way.

All that said, I have run across many things that can cause your symptoms. Have you seen an allergy/immunology specialist? Mine has really helped me

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Hi Jaydroid. Has anyone ever discussed Sjrogren's syndrome wiyh you. Dry mouth not producing enough tears or saliva are key symptoms with allergy possibly joint pain and gi issues being other possible symptoms.

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Hi Jennie. I’m so sorry to hear that you haven’t been given a proper diagnosis for your symptoms. You may want to contact the consultants at Stem Cell of America since the treatments they offer have been shown to be effective for some if not all of the symptoms that you’ve listed in your post. Their fetal stem cell treatments have no side effects and often begin to take effect the same day of administration.

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I'll check it out. I haven't read up on any of that yet. Thank you for the suggestion

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Hello,

Took nearly 20 years but I was eventually diagnosed with mixed connective tissue disease. I will try to list all my symptoms but it's lengthy like yours and I have brain fog. Headaches blurred vision confusion brain fog oral sores tongue swells difficulties swallowing general fatigue and pain (severe) muscles and joints hurt weakness in my legs. Tingling in my hands. Muscle spasms. Sensitive to cold fingers and toes sensitive to cold and painful. Difficult breathing heart palpitations back kidney pain. The overall worse part is the fatigue. Pain is no fun but the fatigue is just awful. Not having the strength to go to the bathroom is just embarrassing. Oh that reminds me constipation and diarrhea. I also was told drink coffee. Never been so disgusted in a physician before that. Pft!!! Drink coffee any doctor that says drink coffee as a remedy to chronic fatigue is a quack and get a new doctor. Oh and file a report. I was ignored for years until one day I could not open my eyes. I could hear my husband talking to me but I couldn't open my eyes. Vitamin D deficiency to the point of developing hypoparathyroidism along with just my normal hypothyroidism. I finally insisted on rheumatologist she was a quack I insisted on a second opinion and this rheumatologist (Harvard educated) finally diagnosed the mixed connective tissue disease. Oh and I have had 9 miscarriages in my life no live births. I now take Antimalaria medication helps a little I think. No pain meds trying to save my liver. But I understand your struggles and send you the best of wishes.

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Identify with you Sheila. I have been diagnosed with Behcet's and it's all so similar to your story. I am currently treated with mycophenolate and interferon and am symptom free. I hope you find some better treatment. I know it can be patchy. I see a specialist in vasculitis and that literally changed my life. So much better now with the treatment I get from him. 

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That sounds like a terrible struggle, Sheila. I'm glad you finally got some answers. You're right... The fatigue is the most disabling. I was also told to drink coffee. Lol. I switched doctors too. Are you taking anything for that? I was on provigil, which helped some. Are the oral sores like blisters? Or more like canker sores? How much has treatment helped? Did you ever get your vitamin d to the right range?

20

The mouth sores are like cold sores. In the back and on sides. Tongue swells sometimes. The vitamin D is better. 10,000 ui twice a week and I try getting out in the sun. Still only in low normal range. I think diet helps. The vitamin D is what tipped me off. For some reason my body doesn't get the vitamins from my food........anemic too. Why? I don't know why. But I seem to have irritable bowel syndrome. The inflammation in my GI must have something to do with me not absorbing the vitamins sufficiently. Paleo works best for me. Although it is difficult. I try mostly no dairy and no sugar. That seems to be a good reasonable goal for me. I try no white bread. Oh I forgot to mention eye pain think I have terrible eye pain. Infuriating! It's just really not pleasant. On top of everything else it just seems to be that last drop in an already full glass of water that causes it to spill over for me.