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Scared to death!

I just found out yesterday that I have a brain tumor.. I am scared. Waiting now for MRI and more CT scans. Has anybody had any experience with this? I am trying to NOT panic..but it's hard.



Well, I finally gave in and had a brain MRI. Took a lot because I’m claustrophobic and I knew the stress of having it done would throw me into another flare. Numbness, issues speaking, dizziness, weakness, etc. made my dr think MS or something neurological. Results came back today and the drs response matched my husbands.
‘It’s JUST Lupus
What an impact that statement had on me. Actually made me breakdown and cry. I’m thankful it wasn’t MS, a brain tumor, Parkinson’s, or anything like that but at the same time I’m feeling like those around me have become so used to the Lupus diagnosis that they’ve forgotten how much it impacts life.
Maybe I’ve forgotten too.
It’s not JUST Lupus.

11 reactions 3 comments

Throat tightness?

Has anyone on here with MS struggled with sporadic throat tightness and spasms? After getting my covid vaccine, I woke up in the middle of the night feeling as though I couldn’t breathe/swallow correctly. In a panic I rushed to the ER, however was treated like I was crazy and just doped up. It’s true that I suffer from anxiety, however NEVER like this. Months later, I still randomly get these attacks, and am scheduled to see my dr soon. I try to use relaxation methods to help, as well as take Klonopin. This has never happened until that instance. I get random muscle spasms in my legs. Is it possible this is a new MS symptom?

I have relapsing remmiting MS, but started my journey with Tumafactive MS which presented as a brain tumor and left me with lasting disability 3 years later.

Thoughts on the throat tightness???

6 reactions 2 comments

What are we celebrating?! (MARCH)

national developmental disabilities month
Women’s history
National MS Education and Awareness Month
March 1-31: Alport Awareness Month March 1-31: Brain Injury Awareness Month
March 1-31: Brain Tumor Awareness Month (UK only)
March 1-31: Deep-Vein Thrombosis Awareness Month
March 1-31: Malignant Hyperthermia Awareness Month
March 1-31: Multiple Sclerosis Awareness Month
March 1-31: Myeloma Action Month
March 1-31: National Bleeding Disorders Awareness Month
March 1-31: National Cheerleading Safety Month
March 1-31: National Colorectal Cancers Awareness Month
March 1-31: National Endometriosis Awareness Month
March 1-31: National Kidney Month
March 1-31: National Nutrition Month
March 1-31: Problem Gambling Awareness Month
March 1-31: Save Your Vision Month
March 1-31: Trisomy Awareness Month
March 1-31: Workplace Eye Wellness Month
March 1-6: National Aplastic Anemia & MDS Awareness Week
March 2: World Teen Mental Wellness Day
March 3: World Birth Defects Day
March 3: World Hearing Day
March 4: HPV Awareness Day
March 4: World Obesity Day
March 5: Dissociative Identity Disorder Awareness Day
March 7: National Hospitalist Day
March 10: National Women and Girls HIV/AIDS Awareness Day
March 10-16: Patient Safety Awareness Week
March 10-16: Pulmonary Rehabilitation Week
March 10-16: Sleep Awareness Week
March 11-17: Brain Awareness Week
March 14: World Kidney Day
March 15: World Sleep Day
March 17-23: National Poison Prevention Week
March 18-24: National Drug and Alcohol Facts Week
March 20: National Native American HIV/AIDS Awareness Day
March 20: World Oral Health Day
March 21: World Down Syndrome Day
March 24: World Tuberculosis Day
March 26: Epilepsy Awareness – Purple Day
March 26: American Diabetes Alert Day
March 30: National Doctors’ Day
March 30: World Bipolar Day
March 17: Saint Patrick’s Day
March: autoimmune diseases awareness month

12 reactions 4 comments

My Lonely Brain Lipoma

Hi, I'm looking for others who have this rare type of benign brain tumour. What are some of your symptoms and what has been your journey in getting help? I have a lipoma in the middle of my brain and have headaches, limb weakness and some other issues but can't find anyone to relate to and it's lonely being part of the 0.1% thank you 🤕 #BrainTumor #braintumors #SeizureDisorder #neurology


My Lonely Brain Lipoma

Hi, I'm looking for others who have this rare type of benign brain tumour. What are some of your symptoms and what has been your journey in getting help? I have a lipoma in the middle of my brain and have headaches, limb weakness and some other issues but can't find anyone to relate to and it's lonely being part of the 0.1% thank you 🤕 #BrainTumor #braintumors #SeizureDisorder #neurology


Christmas morning seizure

Ranting with my chin up: Being sick is confusing and frustrating as heck.

So it looks like I had a very classic seizure at 3AM on Christmas morning.


That's actually not much of a surprise. I'm actually rather used to being told that I *might* be having seizures. I have weird neuro symptoms very often and fall on the floor pretty regularly. I have had a real talent for doing that when nobody is around or everyone is distracted. I'm not around either. I'm unconscious.

I have then been given tests and told I am not having seizures (or the worse things: brain aneurysm, stroke, brain tumor etc.) about a bajillion times. This time was different because my wife saw it happen and was able to describe it. Apparently it looked really identifiable. I don't know. I was unconscious.

We still don't know what is causing me to do this. We have not confirmed the seizure. It's at least a good theory this is a seizure and I have been having them for a while.

Over the years I have been told over and over that various bizzare things are "probably a migrane" or "sometimes people just pass out" or "It's probably dissociation." My mental health is admittedly pretty rough.... I have chronic PTSD and a dissociative disorder. I also accumulated a lot of concussions and other vague things people get when life gets rough. A lot of things about my brain in particular have been seeming about a quarter borked for most of my life now.

This time when I fell on the floor somebody was able to describe what happened and my regular GP doctor is like "Oh! One of those!" Apparently the tests that have been done on me, in the past, don't detect seizures unless one is happening at the time of the test, which one was not. I was usually being tested a good while after whatever was over.

It's not usually practical to test someone during an emergency that happens randomly and lasts minutes, at most. Fair, but nobody told me that these would not actually measure one of the things people said they were supposed to be intentionally looking for. The doctor reading the results just said: "We don't see anything. You are good to go now." That does not fix the symptoms. I have totaled cars doing this stuff, luckilly not going fast. Still! It's not good!

Does this put me on the path to maybe not feeling like a medical mystery any more? I don't feel like counting my chickens yet. I don't really feel like running my wife's description by a GP really counts as a diagnosis. I'm supposed to talk to a neurologyst. I don't know if they are actually going to tell me anything that pertains to the other weird stuff that's going on, or do anything more than just try and decide if I need an anticonvulsant.

We didn't go to the ER on Christmas morning because hospitals are not at their best on hollidays. We didn't want to spend Christmas there anyway, and I was tired of being told I'm not on drugs (I don't need a doctor to tell me that!) and still don't have something that's going to intimately kill me, so: "It's fine. Right? Go home." Apparently the ER staff might have been able to figure some stuff out based on my wife having seen what happened, but we didn't know that at the time. Sooo... I'm probably in for more tests... Hopefully not the kind that don't catch the thing if it doesn't just happen to happen!

2 reactions 2 comments

I’m new here!

Hi, my name is spaceechidna0950. I'm here because I lost a 22 year old son to a drunk driver. my other son has had 2 kidney transplants. and I have brain tumor

#MightyTogether #PTSD #Anxiety

2 reactions 1 comment

I’m new here!

Hi, my name is 3nightlyprayers. Hello. I don’t know where to start I am a Father of 3 wonderful children, one has a brain tumor, and one child is type 1 diabetic , and my 3rd child. I live in a world where you always second guess if you’re doing the best you can for your children. This is why I’m here I lost my father a few years ago and my Mother is not doing so well nowadays. My story is a long one. I wasn’t certain what I should say here. I go weekly to be with my Daughter during her treatments.


4 reactions 2 comments

Will I Ever Find Someone Who Loves Me? #Relationships #Autism #Depression

My girlfriend just broke up with me. Things moved fast. We moved in together. She has her own slew of mental health issues, but I never judged her. I helped her get her fibromayalgia pain under control. And then, I started to hear what everyone tells me. You’re around too much (I’m on Social Security Disability and can’t work). You’re too sensitive.

After having lived with my parents all of my 33 years on Earth, I got my first taste of what being independent was like. And for a while, I felt what having someone who cares about and loves you feels like.

Now I’ll have to move back in with my parents who are often cold, distant and unloving. The group of friends I made through her I don’t think I can bring myself to hang with. It would just be too awkward. So I’m right back in the dark. Forced to either find some awkward way to meet people like library events, or shut myself back in my room and play video games all day.

What’s the point, I keep asking myself. Maybe I was always meant to be alone. Is it so bad to not have any friends. Or to be single for life?

There’s more to my story. Just briefly, in addition to my autism I’m also a childhood brain tumor survivor.

42 reactions 14 comments