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Multiple Sclerosis Community
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710547 tn?1295449630

Lord be with me! Devastating news!

I have to go to church soon so only have a minute, but wanted to tell you all this.  I could use support, prayers, and any other help possible.  It wasn't easy to get the MRIs due to Missouri Medicaid being broke - and had to have them a week apart but that's another "vent" story.  I was expecting to find out I had new lesions in my brain due to having symptoms of either that or lesions in my spinal cord.  I did have a lot of deterioration and strange things happening in my spine, but the big news was my brain.  I've been havine right sided muscle loss and weakness and pain, and more concerning - aphasia.  I was getting so bad that on the phone I'd have to apologize - also just talking to friends.  Word finding and fluidity were going.  The MRI shows left hemisphere atrophy with the only dx probable (with clinical corroboration - definite) of Rasmussen's Encephalitis/chronic focal encephalitis / or even Rasmussen's Syndrome.  It was once thought only to occur in children, but occurs in young and older adults as well.  It is rare in any age (of course).  The hemisphere that is effected (mine is the left) starts with destruction  in one area and then marches on until the entire hemisphere is involved.  It has 3 stages, taking 8 - 12 months and although different immunological treatments have been tried, as well as resection of the initially effected area - nothing works other than hemispherectomy..  There have been studies showing that older people may have some delay in progression with human IVIG, and I've been getting IVIG while this has been happening, but since my last MRIs were a at least a year an a half ago - don't know for sure when this started.  I do know the aphasia - first sign for left sided people has been obviously progressing for some time.  Then there are increases in seizures, which can be things like I've had - myoclonal jerks, and total aphasia attacks to full tonic-clonic seizures.  I have to see my neurologist who has never helped me and go from there.  But they say the sooner the brain surgery takes place the better.  In my age group - language isn't regained, and hemiparesis is pretty diffuse.  Also progressive dysphasia is common and I don't need more of that.  I'm a full - left AND right sided person.  BUT my greatest loves and gifts are writing, art, and the expressive arts.  I hated losing physical wellness and hate living in pain, but facing the removal of half my brain - a surgery I probably stand a low change of surviving - that's a tough one.  

I have a lot to get in order quickly and haven't been very successful thus far getting help with any of it.  Phone keeps ringing and gotta go.

Blessings, Jan
27 Responses
1253197 tn?1331212710
Hi Jan

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

Sarah

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.
572651 tn?1531002957
Hi Jan,

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.

hugs, L
293157 tn?1285877039
Sorry to hear the news you received, my prayers will be with you and let us know how things go.

take care
wobbly
667078 tn?1316004535
I am terribly sorry.

Alex
710547 tn?1295449630
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
739070 tn?1338607002
Dear 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,
Ren
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