Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group connecting tissue disorder

Any idea about connecting tissue disorder resembling AS symptoms, especially one giving mobility problem. Kindly mention the specific name of the disease.

Thanks.

Jay

I have the impression that AS is a connective tissue disorder!

Thank you.

I consulted an ortho two days back, since my MRI mentions DDD, straightening of spine and disc rupture at L5-S1. None of the 6 MRIs I had over 14 years showed sacroilitis. He went thro all MRI, Bone scan, X ray, serum inflammatory marker reports, EMG, Nerve conduction test and Doppler test for legs. He examined clinically. I have not felt pain during examination. Then he mentioned this may be connecting tissue disorder. When I asked him to name the disease, he was not clear. May be a sort of auto immune issue related to muscle. This type is very rare in our country. Suggested to consult rheumy, who ruled out AS for me. I would like know the disease name. My main issue is inability to walk and climb stairs.

I will discuss with my rhuemy, who ruled out AS, on next appointment.

Jay

Hello Jay:

I am at a loss like many others regarding your legs. I haven't been active enough on this BBS to be reasonably familiar with your history and symptoms. Do you have a generalist or some other kind of doctor that coordinates all your specialists so that at least one person has the "big picture?"

I've heard of an immune disorder that interferes with muscle functioning. The muscles do not get damaged but they can't respond to nerve impulses for a sustained time because the immune system interferes with signal transmission. So in that case the nerves and muscles are fine, there is just extra molecules not allowing the muscle to sustain contraction messages.

I wish you well!
Kevin

Hi Kevin,

Thanks for info.



This is done normally if a patient is admitted in a hospital. Otherwise, it is left to the individual's efforts.

Jay

Hi Jay, there is an autoimmune condition called mixed connective tissue disease. This apparently has features of several diseases. Maybe this is what your doctor was referring to?

Hi Janclebro,

Thank you. Trying to get more info.

Jay

Hi Janclebro,

Just now noticed your signature
Appears took almost 50 years to diagnose?. Can you brief your medical history such as the symptoms you got, tests undertaken, treatment taken etc., Really curious.

Jay

Hi Jay - as you can imagine it's a very long story. I started having chronic knee (and sometimes groin) pain at the age of seven. It was misdiagnosed as growing pains and was easily treated with aspirin, which I took almost daily for the next 35 years. Several other symptoms appeared during my teens - pain in my coccyx, burning skin, a lot of pain in my outer ears, extreme dryness of skin and hair and chronic low grade depression (which I didn't recognise as such at the time.) In my twenties my depression increased and I started to struggle with chronic insomnia. I also developed a lot of stiffness in my back which at that stage wasn't painful. In my late twenties I struggled with neck pain and accompanying pain and numbness in my arms. I started to use anti-inflammatories. My doctor simply told me I needed a holiday. Eventually I persuaded him to let me have an x-ray which showed several issues and appropriately silenced him. These developed over the next few years - I had a herniated disc impingeing on my spinal cord, osteophytes, and my neural foramina were nearly closed in a couple of my vertebrae. The pain came and went, but eventually I was barely able to move and completely out of action for some months. I was scheduled for a fusion. During this time I started to make a connection between food and symptoms, and once I started to work things out, my pain miraculously disappeared and I cancelled the surgery. It puzzled me that there could be something visibly wrong with my neck, yet if I avoided certain foods I was pain free. I started to have a chronic pain down the side of my right leg - to this day I have no explanation for this pain. It has troubled me now almost constantly for twenty to thirty years and occasionally flares in my left leg too.

Meanwhile I developed chronic pruritus. I went from doctor to doctor but got no relief or satisfactory diagnosis, so eventually gave in to cortisone which only helped a little. It was severe enough that I frequently scratched till I bled, and I cried myself to sleep many times. (It was relentless for the next 24 years until I started the no starch diet.) I was also having fertility issues and was told to give up cortisone. I took fertility drugs and shortly after this went into my first major flare. Apart from pain, my vision was changing rapidly, my eyes were dry and I developed corneal ulcers and had to give up wearing contact lenses. I had days where my eyes were so light sensitive that I couldn't open them, and I had a headache incessantly for three months. I was advised to give up gluten, dairy and yeast and this was life changing for me - about 30 symptoms disappeared, including everything I've mentioned except the pruritus and the pain in the side of my leg. My chronic knee pain of 35 years vanished, my mood swings and depression completely disappeared. Because of this I started to attribute everything to food intolerance, which did not make me popular with doctors who poo-pooed such things.

I had a couple of good years, but started to have a lot of chest and leg pain in my forties. It was mostly bad at night. Because I was now convinced that all my symptoms were food related, I looked no further, and constantly tried to work it all out, but failed. From time to time I used to wonder whether I had autoimmune problems, but decided it was unlikely. My father had AS, but I always thought that this was somehow connected to the fact that he had broken his neck, so I never gave it much thought. It made perfect sense to me that anyone who had broken three vertebrae would suffer chronic pain. (He died when I was in my 30s.)

My pain problems started to escalate, now involving my achilles and plantar fascia, and some days my feet would ache so much that I would hobble. I started to have severe aches in various joints that would each last anything up to 18 months. I had an episode of ulnar entrapment, plus frozen shoulder on each side at various times. By this time I had left my unsympathetic and scathing GP, but hadn't found a new one.

In my early fifties I found myself in an emergency room unable to breathe properly, with severe chest pain. To cut a long story short they sent me for a gastroscopy and I was dismissed with nothing apparently wrong with me. I knew deep down that it was something quite serious. For several years I had not been able to lie on my right side because of the pain in that leg; now I couldn't lie on my left because of pain in that shoulder. Retrospectively it was eventually decided by a cardiologist that I'd had pericarditis. As no cause could be found, one caring doctor suggested the cause might be autoimmune. He sent me to a very young rheumatologist who decided I had AS based on an x-ray. One week later she looked at an MRI and changed her mind. Unfortunately I went into another major flare while seeing her. Nothing showed up in tests and she made it very clear she thought I had flared for her benefit and sent me away. I was humiliated. My symptoms escalated significantly over the next few years, the flares became more frequent. I reached a point where I was often sleeping only an hour a night, never more than three. I had 3 or 4 more flares of pericarditis, none as bad as the first. I was in constant pain but dared not see a doctor as I knew the blood tests would suggest I was a hypochondriac, besides I knew that food was somehow implicated. I got through the nights by sitting up and distracting myself with TV. I became convinced that I had something that had no name, but that one day science would give me an answer.

I eventually found a new kind GP and told him very little, as I didn't want him to scorn my long list of symptoms, but I told him enough to get a script of Celebrex. Eventually no amount of pain medication worked, but I took opiates at night to make me whoozy and help me not care too much.

A friend kept on at me that I should keep trying to get to the bottom of this. My new GP recommended the rheumatologist who had cared for my dad, a brash and unfriendly character reputed to have a good brain. It took 4 years for me to get up the courage to face what I expected to be another humiliation. In July 2016 I saw him and was finally given the diagnosis. Interestingly, he used the same MRI from five years earlier! My symptoms became much worse once I started the medication and I became severely suicidal. My back ache became severe, hip pain and sciatica became new issues, I developed a lupus-like flush, had my first outbreaks of psoriasis, and my eyes started to burn so severely that there were days I couldn't open them or leave the house. My gut became very sensitive and burnt incessantly, I was nauseous 24/7. All my symptoms that had disappeared when I gave up dairy, gluten and yeast, now reappeared, including the chronic knee pain of my childhood, incessant headaches, and pain in every joint of my body, as well as muscular pain and tendinitis. He did not appreciate the suggestion that his medication was implicated and became very dismissive of me. I eventually took myself off all meds and decided to go it alone. My pain became even worse once I stopped the meds, but I was determined not to use them. I started researching cannabis which led me to this site and the diet. The diet made perfect sense as it tied up with a lot of what I had discovered, and it helped a lot, but it's not been the entire answer for me. Apart from all starch and dairy, I'm almost entirely off all sugar. I've also had to give up eggs. My gut is severely inflamed (high faecal calprotectin) and I developed numerous new intolerances while on that medication, which have now shown up in blood tests. I'm now seeing a functional medicine practitioner and am hoping to recover my health. I'm considering FMT as I'm feeling fairly desperate.

That was not very brief, but it could have been longer... Hope you can make sense of the ramblings! - Jane

Hi Janclebro,

Thank you for sharing the details.

Really feel very sorry to note the problems faced by you over many years.

It is not rambling, sharing and expression of anguish, I may say.

Is diagnosis still elusive?.

I will go through in detail and come back.

Jay