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Autoimmune/Connective Tissue Disease (Lupus, Sjogren's, ...)

#1

I have recently been given a diagnosis of ‘Undifferentiated Connective Tissue Disease’, which means I have some, but not all features of a bunch of connective tissue diseases. Has anyone been down this road?

As well as the dizziness I have joint and muscle aches, fatigue, fevers, reflux/swallowing issues, Raynaud’s, dry eyes/mouth and a chronic cough. My blood tests showed a raised ANA (1:320) but were otherwise normal. The non-dizziness symptoms are actually a lot worse than the dizziness at the moment.

I wonder if the dizziness is related to this or not - the doctors I have seen have been puzzled by it and say it’s not a common CTD symptom. Maybe it is the autoimmune problems triggering migraine…

Andrew

#2

Hi Andrew,

My daughters have both been diagnosed with a connective tissue disorder, they are 16 and 18, and the rheumatologist is leaning toward Ehler’s Danlos syndrome (probably hypermobility, but keeping an eye out in case it’s the vascular) for one and possibly a Mast Cell activation disorder and Ehler’s Danlos for the other. She’s having a bone marrow biopsy tomorrow to make sure it’s not mastocytosis or something like that. My mother was just diagnosed with everything that you have listed in your post! She’s been ill all of her life and just now found out why at 70 years old! My daughters suffer from severe vertigo (my mom the same, but hers will stop eventually). The oldest one started after a migraine and has continued to be with her for the last 6 years. The other one had a virus that went into ear infections (very mild) and ended up with terrible vertigo that has been 24/7 for the last 6 months. At the present time the youngest cannot read, write, watch TV, play on her cell phone, or ride in a car. The oldest had a set-back after her graduation party a couple of weeks ago. She overdid it and is now much worse than she has been in years. I don’t think the migraine is the underlying cause, I think they are missing an autoimmune disease along with the connective tissue disorder. Our life as a family is extremely limited. Both girls also have low blood pressure and I think the oldest one has POTS because of some of the symptoms that keep happening. The rheumatologist uses terms like “tricky” and “unique”, etc. in describing their condition. The worst part of all of it is the vertigo. What do you take for yours and does it help? Anybody else in your family with your symptoms?

#3

Hi Dizzy Girls,

I was diagnosed with Mast Cell Activation Syndrome about a year ago (and also had a bone marrow biopsy at the time to rule out mastocytosis). Just wondering how your daughter got on with hers and what your Rheumatologist’s thoughts are in relation to migraine? My immunologist and neurologist do share information regarding my case but at this stage they haven’t suggested a link between MCAS and migraine.

Victoria

#4

Thanks for the update Dizzy Girls. Great news that your daughter doesn’t have a mast cell problem and good they’ve identified something which can be treated. I hope it works out for her and that it reduced her migraine problem. Please keep us updated - it’s always interesting to see how different health problems can intersect/overlap.

Victoria

#5

Just an update on my girls. They are both dizzier than ever, but we were able to able to see a geneticist on Monday, actually we have a team :D, never had a team before! There are three of them and after much clinical discussion/in-office testing (3 hr appt), they are going with the hypothesis of Ehler’s Danlos Syndrome. They are going to be discussing their case with the Pediatric Neurologist that we saw recently also. Just for general info, I had never heard of this before, but a condition called Familial Episodic Ataxia Type 2 is known for causing chronic vertigo. Vertigo can be the main presenting symptom. My oldest daughter’s migraine aura is still the vertigo, but they said that the EA-2 could still be the cause. Neuroscience and genetics are two very complicated subjects to understand, but I’m reading everything I can. Going to see an ENT at the same University so that they can link all of their info together. Very hesistant about the ENT because it seems all they want to do is put you in a chair and spin you around and say “let’s see if she gets dizzy”. I know that my one daughter has a right beating nystagmus as well as a vertical one. Depending on what is causing the vertigo, depends on how they treat it (so I’ve been told). We have been to the dr.s about 68 times this year, hope they find something soon!

#6

I have dysautonomia classified as POTS and was recently diagnosed with Ehlers Danlos syndrome and probable mast cell activation disorder and I also have had daily vertigo for 4 years. My dysautonomia doctor does not think the dysautonomia is causing the vertigo. I have had dysautonomia over 20 years and vertigo about 4. The neurologist thought it was probably MAV. Migraines are pretty common in my family as well as motion sickness. Many people with EDS have poor coordination but most of them do jot have daily vertigo. I have been trying to figure out the link so I can have a better idea of which treatments to try. Like most people with dysautonomia, EDS and MCAD, I have a lot of side effects from medications. I am sure that is true for people with migraines in general. I hope your daughters can get some answers now that there is a team working on it. Keep us updated.