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Hello. I am 48 years old and I too have just received results of WMH: “several small foci of high signal seen on the FLAIR sequence in the supra-tentorial white matter”. The conclusion on the report Is: “Minor nonspecific white matter signal changes in the supratentorial brain. These most likely represent evidence of early micro-angiopathic disease. Differential diagnosis is broad and would include post inflammatory and idiopathic causes of demyelination as well as small vessel vasculitis. Follow-up may be helpful to assess temporal change”.
I too am having increased dizziness and gastro problems [in addition to cognitive and memory decline]. I have the report, but I haven’t actually met with my neurologist to discuss it [she ordered the MRA]. If it is Early Micro-Angiopathic Disease, I would be inclined to think that I may have Vascular EDS, as I am only 48 years old, so it is early-onset. I do have many other signs of Vascular EDS, but I am diagnosed with Classical EDS. Mine is considered mild, or early stages of white matter disease [another name for micro-angiopathic disease]. This does make sense, as I have been telling every specialist I have seen over the decades that not enough blood is getting to my head and I could actually prove it. Anyway, not sure if this helps or not, but it is interesting that you also have WMH. Also, I have a deviated septum and enlarged turbinates that at times completely block the left airway and partially block the right airway, leaving me not being able to breathe through my nose. This causes systemic-wide inflammation and a cascade of events whenever I am in a flare-up – but the doctors are not taking me seriously when I tell them my airway is blocked and I am not getting enough oxygen. Maybe now with Early Micro-angiopathic Disease, they will finally believe me.
Thanks Barbara. I always appreciate your feedback
I have to move out for four weeks while my house is under renovations-I am trying to pack up some boxes and load up the car but of course it’s killing my neck and I’m exhausted. Anyway Barb, I didn’t want to rush my response to you, so I will reply as soon as I can. I will be without Wi-Fi while staying at a friends house, but I will try to get back to you as soon as I can get to wi-Fi.
Been waiting since December 9, 2014 for that referral. I followed up three times within the first six months and then got really frustrated and now it is been well over year. Dermatomyositis and systemic vasculitis are definitely two things that should be diagnosed quickly-I am not impressed.
Thank you for the push Barbara- I will follow up AGAIN. I wish you all the best Barbara-I know you have a lot going on. Have you tried craniosacral therapy? I dramatically improved. I would say I feel 70% better since receiving craniosacral therapy on a weekly basis. This is proof to me that I have intercranial pressure issues. I also have some weird sinus issues related to the intracranial pressure. And this could be related to the type of systemic vasculitis that I may have. I know it sounds crazy, but if I push on one of my swollen sinuses my neck pain (back of neck) and the pressure in my head subside and my shallow breathing returns to normal deep breaths.
Hi Barbara. Thanks for replying.
The purpose of the CT Angio stemmed from a vascular spasm that was noted in my right subclavian artery during ultrasound testing. So the focus was on my shoulder. They found a kink in the subclavian artery and possibly some pressure on it from an extra cervical rib. I did an injection but it was timed for the shoulder.
I am actually not sure if these images are CT or MRI-I didn’t label it when I transferred it to my iPad. I thought it was the CT Angio, but it could be my MRI – I don’t know how to tell the difference.
My prominent veins are more so than before as well. The vascular team dealing with the kinked artery referred me to a specialist because they felt I have systemic vasculitis. Still waiting for that appointment a year later as well as an appointment re-dermatomyositis diagnosis. I am positive too that I have erythromelalgia in my hands and feet. It is getting worse and keeps me up at night. the erythromelalgia is activated/coincides with the prominent veins. They are related.
In addition to the kinked artery, I have many visibly tortuous veins. I am convinced that I have vascular EDS, my geneticist has me diagnosed with classical, but also said that we can’t rule out vascular 100%. She said she would reconsider the vascular EDS diagnosis if I had any tortuosity’s in the CT Angio, which I did. I have not met with her yet though.
Does your blood pressure go up with your pots? Mine does and I feel this has something to do with the prominent veins.
Start with vasculitis for the prominent veins. If I get diagnosed with anything I will be sure to let you know.
Welcome to the forum LeeMarch 11, 2015 at 5:21 pm in reply to: LUPUS, NEUROPATHY, DERMATOMYOSITIS AND SYSTEMIC VASCULITIS… #5367
Welcome and thanks for sharing 🙂
This is great information. Sounds like we have a lot of the same symptoms. Let me know if you get diagnosed with anything else such as vasculitis. I will do the same. I am seeing a neurologist about the twitching at the beginning of April and I will post if I get diagnosed with anything.
Very interesting… I read the other posts that you mentioned. I believe I have small fiber neuropathy and I am in the middle of trying to get diagnosed. And that feeling of wondering if you’re going to wake up in the morning – been there too. I also have erythromelalgia but I do not have a solid diagnosis yet.
I also had a severe case of whiplash 26 years ago. I believe the whiplash was the trigger to the starting point of my decline – I was highly active and extremely athletic prior to this. Snowboarding, volleyball, golf, rollerblading etc. And now I can barely function. I’m sure everyone here can relate.
Do you think that what is happening to us – do you think anyone will figure it out in our lifetime? I often wonder if treatment will only be in time for the next generation…
MJFebruary 16, 2015 at 3:20 pm in reply to: LUPUS, NEUROPATHY, DERMATOMYOSITIS AND SYSTEMIC VASCULITIS… #5307
Thanks Dr. Diana. I also have what I believe is swollen lymph nodes – mostly in the neck and back of head, that is why i am thinking Lupus. Do EDSers get swollen lymph nodes that could mimic lupus? Also, my facial rash is bumpy and itchy. I do have flushing as well, but this rash is different from the flushing. Are there any known cases of EDS with Lupus? I have also considered that the facial rash could be dermatomyositis related. Let me know your thoughts! Thanks, MJ.
PS I also have what I believe is a painful, recurring nose ulcer and I am positive I have Erythromelalgia, but I am no where near being diagnosed.
Thanks Barbara. Any little bit helps. The problem with the report is I got the scan bc of a vascular spasm in my subclavian artery, so I think they are only looking at the shoulder images…
Okay. I am meeting with three vascular surgeons next week. I will see what they say and keep the post updated.
A few more images…
Ok, thanks Dr. Diana. Would you like me to send a CD? I have thought about sending one to Dr. Francomono and the surgeon she works with, but I don’t even know if they would look at it.January 29, 2015 at 7:12 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #5273
This is my CT Angio.
If anyone can answer any of the questions, great!
MJJanuary 24, 2015 at 9:20 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #5263
Thank you so much your help!
I am meeting with 3 vascular surgeons next month in regards to vasospasm and a kinked subclavian artery, and they will be looking at the CT Angio and I will enquire about the empty sella, and much more!
I will post if anything interesting comes of the appointment.