I found it difficult to take on board all that you shared in your post as it felt such devastating news that I cannot begin to think how you must be feeling or dealing with this.
The brain surgery sounds exceptionally scary and I think you need time to digest all that you
have found out, for the clinical evidence to be confirmed and the opportunity to talk with your family and professionals about the way forward before you reach any decisions.
You have my support and prayers and I am so sorry that you are having to deal with this very frightening news.
With love and hug
PS I hpe you don't mind me suggesting....but in future posts many people on the forum would find it easier to read what you have written if you break your post up into short paragraphs.
When you get a minute, would you back up and tell us how this fits into your other diagnosis. I'm remembering you have some very serious illnesses already in your differntial.
I'm sorry I am not remembering the details right now.
This newest dx sounds beyond awful. We'll stay posted to hear more and what the doctors propose for treatment.
Sorry to hear the news you received, my prayers will be with you and let us know how things go.
I am terribly sorry.
Thank you for your kind thoughts. I am sorry to have run out of time this am - suddenly the phone was interrupting me about getting my car window fixed and I had little time anyway. Hence a hurried explanation. Sarah - I know it is the proper way to write posts, but I'd appreciate some grace given the circumstances.
I have posted my dx on my profile, but if you're like me, you get behind in keeping up with those. I do have more than my share of troubles. Systemic Sclerosis has all but made my esophagus and the rest of my GI system totally dysfunctional. I aspirate GI contents when sleeping when GP slows digestion to the point of leaving rotten food in my stomach. It also has caused Left Ventricular Diastolic Dysfunction, Lung damage galore, so am on O2, have PH and some fibrosis, and bilateral atelectasis due to alveolar plugging. Severe Arthralgia with swelling - especially in my hands and fingers
MS has caused foot drop, parasthesias everywhere (at different times) and cognitive problems. I'm using a 4-wheel walker now which helps.
Diabetes - parts of type 1 and 2; Atherosclerosis - severe; Hypothyroid; Interstitial Cystitis; Osteoporosis; Complex "cyst they hope" in spleen; Nodules in Lungs; Enlarged Pancreas with mass at head; dilated common bile duct, bile duct, pancreatic duct and intrahepatic duct; Enlarged Liver; Enlarged Heart: Enlarged flaccid Esophagus Barrett's Esophagus; Mixed Connective Tissue Disease and still may have Rheumatoid Arthritis; DDD with cysts and other serious changes on last MRIs
I really can't remember everything right now. This new thing is also an autoimmune disease related to inflammatory changes. I truly didn't think I could get any worse - doctors didn't think it was possible either - until death that is. But this - I am afraid I won't be able to keep anyone up to date soon, or after surgery, because if I live, I won't be able to speak or communicate. Few, including only 2 in my family know the news it is so new and I don't know how to tell them. I'm already isolated due to them not wanting to watch me deteriorate and not knowing what to say.
While I can, I certainly plan to stay on the site and keep you informed and take part. But we all need grace - especially when skills we take for granted begin to erode. Even tho I wish people could understand what a day is like for me - I wouldn't want anyone to face that, so I trust in God and know that Jesus experienced rejection, sadness, and pain beyond our imagination. He is my companion and Shepherd.
My doctor will no longer be able to write my pain scripts after June 1 - something that is also quite a bit of bad news. So I face tough times, and less cognitive ability and less concentration each day. But I know this is the best it will be. That has shaken me - I do admit
Blessings to you all, Jan
I am so terribly sorry to hear this devastating news!!! What an awful lot of information for one to grasp and understand in such a short time.
You need to have the full support of your family, no matter how hard it is for them to take...it's even harder for you to undergo. Your family and friends here on the forum will be thinking of you and sending good thoughts your way !
Remembering you in thoughts and prayers,