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I went to my PCP on Tuesday and then she was going to refer me to a neuro. However, the next day I completed lost my ability to walk or talk so I went to the ER again. Where, they performed four MRIs and the neuro team was following me closely.
I was discharged, without a diagnosis. However, i notice on one of my MRIs I had a “Capillary Telangiecstasia on my Brain Parenchyma”
I plateud. Speech and walking is like 70% back to normal but happens in episodes. But going on day three feeling the same.
Did you look up "capillary telangiectasia"?
Here it is. This info says it's usually asymptomatic, but some patients may have headaches and[list of symptoms]. Usually affects the young and middle-aged. Can be hereditary.
Capillary Telangiectasia (CTS) is a type of vascular malformation of the brain, in which clusters of dilated capillaries are formed in some areas of the brain, interspersed with normal brain tissue.
Although this type of brain vascular malformation can occur at any age, it is most often found in young and middle-aged adults.
The disorder is typically diagnosed incidentally, or while performing an autopsy. If symptoms are noted, then a thorough physical examination, symptom assessment, evaluation of family medical history, and imaging scans can help make the diagnosis
Intracerebral hemorrhage can be complication of Capillary Telangiectasia, which may cause headaches, weaknesses, and paralysis.
I went to my PCP on Tuesday and then she was going to refer me to a neuro. However, the next day I completed lost my ability to walk or talk so I went to the ER again. Where, they performed four MRIs and the neuro team was following me closely.
I was discharged, without a diagnosis. However, i notice on one of my MRIs I had a “Capillary Telangiecstasia on my Brain Parenchyma”
I plateud. Speech and walking is like 70% back to normal but happens in episodes. But going on day three feeling the same.
My concern was always stroke which were ruled out several times with CT and MRI however small bleeding into the brain won't be picked up by imaging studies is my impression. That isn't my field. Small bleeding episode may have no symptoms. The capillary telangiectasis condition usually doesn't cause bleeding and may be an incidental finding. Cavernous hemangioma's are difficult to separate form capillary telangiectasia and they do bleed more often of 1 in 10 chance. It's obviously important to find out if something bleed out because it impacts prognosis and treatment.
So HM is still in play but it would have been nice to determine if a small bleed occurred and that is done with a spinal tap and looking at the color of the spinal fluid to see it is yellow (xanthochromic) or red because of red blood cells. Normally four tubes of spinal fluid are collected and one counts the cells in tubes one and four and compares the cell count. One can have a bloody tap because of poor collection techniques which is why one counts in several different tubes. That's why you want somebody who is good at it. Whether it is bloody or not one looks for hemosiderin (iron) laden macrophages. Their presence indicates a post hemorrhage bleed longer than 8 hours ago. A hemorrhage in the brain will release the red cells in the spinal fluid and they are eventually destroyed yielding the yellow color in the destruction and releasing the iron which is then taken up by the macrophages. I am not sure if it is worth the risk right now. They would do surgery is any bleed is detected via the tap.
Good luck my friend. I wish I could read the chart as there is much information in there. I hope you don't have any ill health and it resolves enough for you to see the neurologist consultation. Unfortunately like I said if there isn't any hallmarks that hit you in the face as far as diagnosis then doctors can only wait until the next shoe drops. They pretty much ran the course during your hospital stay.
Im so sorry, but i didnt get much direction at the ER. Is a BCT, a lesion?
Can this be caused by MS? All neuro appointments can take months to go to and im just a tad bit worried.
My walking is surpressed as well as speaking still. I will find a may to uoad a picture of my my result paragraph where it said something negative
This process is scary and if im causing confusion please ask and i will unwind. I noticed i do that a lot
BCT Brain Capillary Telangiectasia? That is considered a lesion but it's a known specific lesion not included or outside the diagnostic criteria for MS. The lesions of MS are caused by demyelination. You also need at least two lesions to fulfill the definition of "multiple" sclerosis. Multiple sclerosis means multiple scaring. sclerosis means scaring. It is a host repair response. The host repair, unfortunately, replaces the tissue with scar tissue rather than the original cellular material that was present there. BCT is completely different and not related to MS.
You need to rest up and it is getting better with time. All diagnosis on the table right now indicates that you will be better.
I already called my doctor and explained this to them
However, today rapid decline in use of legs. My legs are turning purple on the knees. What is this?? I attached a photo. No filter. I thimk im getting better then i get remarkably worse.
I already called my doctor and explained this to them
However, today rapid decline in use of legs. My legs are turning purple on the knees. What is this?? I attached a photo. No filter. I thimk im getting better then i get remarkably worse.
I hope you let your doctor know about your photo. It almost looks like a reticulated linear pattern. It's either a bruise that happened when you fell in which case the medical notes on intake would have noticed any bruises in the medical record. Not sure if it is a bruise or telangiectasia.
Stay in close communication with your doctor and there were discharge papers given to you by the hospital and what you should look out for and when to go to the ER again if complications occur. If you get active bleeding anywhere then obviously that would be of concern.
The only real way to tell what is going on with you is for a doctor to have eyes on you and have the medical records in front of him. Nobody expects any deterioration based on your hospital stay.
HM cases can last for months but again it is a diagnosis of exclusion basically. That means it will be ruled out if something else pops up that can explain all of the symptoms you are getting.
To be clear and not cause controversy(because thats the last thing i want to do) A local doctor said a lot of people who had covid were getting diagnosed with Diabetes. That was more my motivation to pursue this rather whether its true or not. I said that with little context, apologize for that.
And I eat a lot of carbs because its the only thing that will keep me full. I will eat, eat, eat and eat nonstop. There is no satisfaction. I may eat a full sized sub, and be hungry like 30 minutes later. I do eat a lot pastas and sandwiches for that reason. However, I do try to balance it out with fruits and vegetables… but those don't quite suffice. Anecdotally, to paint a picture, my friends say I will eat anything. Im a big coffee drinker too (black coffee). But I do try to mix it up and will eat a good amount. However, carbs are definitely a larger chunk of what I consume. Granted, i have not gained any weight at all
I genuinely eat the most out of anyone i know
You're not eating a healthy diet and that's likely causing your problems. Look at the items I highlighted above. And in your opening post you mentioned a donut for breakfast.
A healthy diet calls for a certain amount of carbohydrates but NOT processes carbohydrates!
I believe your hunger & thirst is being driven by a lack of healthful nutrition.
Evidently, the fruit and vegetables are not enough to make up for your lack of (whole) unprocessed carbohydrates.
Eating lots of processed carbohydrates will not keep you full because they lack what your body needs, so your body calls out for more, more, and more.
It's like an alcoholic who keeps drinking more and more, hoping for a better outcome. (Alcohol is a carbohydrate too.)
So, however much you hate natural, whole carbohydrates, you need to start by eating them exclusively (In place of processed carbs).
And that's just the beginning of a better diet.
No medical doctor is going to correct your unhealthy eating habits, you have to do that yourself.
Note: If the problem turns out to be MS, it was likely brought on by your diet, so that doesn't change the need to make improvements in your diet.
Last edited by LongevitySeeker; 06-09-2022 at 10:52 AM..
Thanks for the update. One normally recommends a two-step process for testing Lyme disease serology. The first is one does an ELISA test and if positive then Western blot testing is undertaken. I don't know if that was done or not.
The other question is that there are labs of ill repute that are doing testing for Lyme disease and who did the test is important.
Lastly there are many questionable clinical aspects that are not what one would consider typical. There are three separate types of skin manifestations associated with Lyme disease and none really look like what you posted.
WIth acute Lyme disease, the target bullseye is the classical manifestation that is red and usually circular in appearance. Your picture looks more bluish-purple and not really circular. That's the problem with pictures though and one has to really look at it in person. At that stage, there are no laboratory markers including blood serology that would show up positive.
Neuroborreliosis is a late complication of infection. It's my understanding quite of few of those present with pain of some sort and more classical meningitis-type symptoms such as headache, vomiting etc. No inflammatory changes were noted on imaging. It would have been nice to get a spinal tap and as mentioned either seeing a lymphatic pleocytosis present with an increased IgG synthesis rate and positive spinal fluid serology for Lyme disease is more convincing.
You make no mention of a history of a tick bite.
Run it through the doctor and see what he says. I presume that Lyme is endemic in your part of the country where doctors are more aware of the clinical manifestations that Lyme disease takes.
Thanks for the update. I was worried about you. We will get there eventually.
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