Not yet diagnoised but has 2 blood clot conditions any one else with other diseases ?
Am I the only one in this group that has blood clots and I recently had a cat scan . Then the radiologist said I needed a MRI after what was seen on the cat scan .I had multiple attacks on and around my eyes for months ,finally my doctor had me have a cat scan and then what they saw on that lead them to where I am now in limbo I had 3 white spots on the cat scan and the butterfly on the center of the brain also has a white spot in the middle of it.With some deteriation of brain tissue .I have no idea what that means but the doctor said the said I also have signs of ischemic stroke or mini stroke with a possibility of one of the Mcdonald criterias'. They haven't as of yet done the dyes on the MRI or the Spinal yet to get the other criterias' yet?I am at a brick wall because of tie ups with the Ms clinic here where I live.I given mixed and not so accurrate info on when I can be seeing a neurologist and who and how soon these other tes can be done and by who?????? I got the MS clinic to get back by writting the HOSPITAL ADDMIn..The Lady at the MS clinic said the have a Union and one person quit and there is only this nurse and her sectratary at the MS clinic . It's only a door to the clinic and that is it , never seems to be any one answering the phone and all I needed was someone there to answer my probably none important Questions to them. But I wanted my questions answered like how much time do I need to take off work and when are these flare ups around my eyes will stop flaring up? My doctor thinks it optical nerve flare ups the last attack caused me to have a lump on my side of the head right where my cheek bone starts ,and the pain is unbelievable around the optic nerve area. If it was my blood clot condition I think I'd be dead.
I am un-DX too but MS has been brought up many times. I was DX this year, with several blood clots (DVTs) in my left thigh. I was put on Coumadin. The blood clot happened months after my neurological symptoms. The doctors still don't know why I got these because, most blood clots happen because of an injury or lack of movement but neither of these things happened. I just woke up one morning and could not walk. My mother did suffer from blood clots so there might be a genetic factor. There is several members on the forum that have the factor 5 connection. Has anyone in your family suffered from blood clots?
If you have a blood clot or are currently on blood thinners, the testing for genetic factors will sometimes not be accurate because of these things. It can give false negatives. At least that's what my vascular surgeon said.
I am so sorry that you are having such a hard time getting to see a doctor. You sound like you really need to be evaluated. Have you been having any other symptoms? What is your eye symptoms? Have you seen an opthamologist for your eyes?
Your doctors really need to hurry and step up the pace and at least get you in to an opthamologist. Your eyes are so delicate and so important.
First sorry if this answer is curt. I'm in a terrible mood for other reasons.
I answered a post many months back from a lady who was as she thought living with MS for years. It turned out she had 'sticky blood' and was cured of all her neurological symptoms with blood thinners. For some reason the word 'Hughes Syndrome' springs to mind - may be wrong, but research blood clotting and neurological symptoms, there's a lot out there I think. To start look up the MS mimics at the top right of this on the health pages.
Are you on blood thinners? Sounds like you need your INR levels regularly monitored and medication given if you are prone to clotting. If there is swelling in your face this could be a clot, it needs to be evaluated straight away, as does severe optic pain.
I have optic pain right now and am fortunate to live near an eye hospital. Even they are struggling to establish the cause, although I have had diagnoses of diploplia (double vision), and severe dry eyes. This can cause optic pain.
Get to the hospital, show them your face, tell them your history, let them do the standard blood tests and investigations. You only get one pair of eyes, and one life, best to err on the side of caution. Get seen to today at a walk in emergency centre.
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