What you see, it is not me?!

[Eksel]

Hello everyone.

I am tired of listening from others that I do not have anything and I could be working, but "I am Lazy without an objective in live"!

It's really anoying not able to have friends and family. I do not have physical disability restrictions, but aí have much more brain damage than others with visible damage from MS.

I am in SPMS, only few intelligence ones understand what's going on.

I Know my complained is the same as others with MS. I also have another virus that caused to me not taking DMT for couple years.

I got HIV being Elite Control since the beginning, which means, 4 ID(Infecto Disease Doctor) , refused to prescribe to me medication for HIV even with the fact of I'm having prior MS. I am taking now a medication that works also against HERV. (Human Endogenous Retrovirus) which is our MS also.

Conclusion: I am very frustrated brain damage for years without treatment and I am not anymore a typical MS progression. I am a invisible progressive brain atropy.

[greaterexp]

I'm sorry for pain you endure from your invisible disability. It's frustrating to try to explain to people who don't have MS about our physical disabilities, which can fluctuate so much from day to day. But it's the cognitive and emotional changes I find hardest to explain. There are days I feel I'd get more understanding if I wrapped my head up with a bandage to alert people to the injuries my brain has suffered as a result of MS lesions.

We understand that you are not lazy, but injured from MS. Are you on SSDI (disability)? Has your doctor had you tested for cognitive changes? A neuro-psychiatric testing could help show just what your difficulties are.

We're here for you.

[Eksel in reply to greaterexp]

Hi,thank you for your reply.

Yes I have new changes in my cognitive behavioral.

I am a ADD now, not able to function correct in my PC, with multiple mistakes and forgetting what to do.

I know I do not know which day of the week I am neither the sequence 7days week names.

I do not have the official disability approved yet. And now here with the CoVid-19 it's a messy because they do not sending money for people who were previously not working.

I am in divorce processing and I do not have concentration to work with paper to organize logicality and by priority, with the agravation that I take over 4 to 5 hours in the detail cognitive demanding.

I have 2 Neurologists, I talked to one of them last month and he requested to all other Physicians my records for he be able to figure out what I could take.

But what I really would like to take is Ibudilast, it's works wonderful to reduce brain inflammation and brain atropy.

But here in USA is now under patent ridiculously and they also extended to Canada.

I can't buy by myself in Japan.

But this is other subject.

I need to figure out with my Neurologist what I can take now for MS that could work inside the brain without reduce too much the Tells and B cells.

Then maybe I will have my behavior and energy better.

I was very well taking the HIV medication alone with integrate who works against the HERV for MS.

I was perfect with no headache,good energy,etc.

Okay I guess I'm going bro send now an email to my Neurologist.

Thanks for your fast response

[rjoneslaw]

Sorry to hear what ur going through.

yes it is hard when the disability is invisible .

Have you tried to get or are you on SSDI or SSI ?

have tried to do speech therapy to help with your cognitive and emotional changes?

I hope thing work out for you

[Eksel in reply to rjoneslaw]

I didn't think about speech therapy.

I guess it's important because I have issues with my speech and words.

I am too much behind of my self care.

Time to get in better health.

Thank you

Always any advice count to me.

Each one has a point of viewing to get an idea.

[agapepilgrim]

I have same problem. Doc calls mine neurodegenerative disease. Over half of right hemisphere is gone. Causes lot of social, emotional, decision making problems. When people tell me I look so good! I want to say you want to take a look at my brain / it’s a jumbled up mess of lesions and cells and misplaced stuff all messed up! Then you would know how sick I am!👹but I smile and try to remember who she is and just keep going. I identify with you. You are progressing more rapidly than me. Just stay with us,,we know what you going through!

[Eksel in reply to agapepilgrim]

Very nice hearing from you.

I always look my MRI CD extra copy in my computer ( not knowing too much), to search around and compare with photos of others brains.Then one time I said to my Neurologist that I do not have brain anymore. Too much "water" instead.

I am partial look of having very active brain before, many years of music to helping for more connected both hemisphere.

But my mistakes in speaking, slow down and short memory problem are considered funny and pure ignorance 100%of the time.

I am not with people in hi level of education, but doesn't matter, because even though, they do not know Medicine.

My progressive MS has activation for one more reason I found out years later, It was chronic intoxication by one chemical component of rat poison added in my food for long time.

It's bromathelin. I learned only research in Veterinary Merck book.

Then I am not in any common disease progress as all MS Community.

It is very good to find people here with good mentally and knowledge to understand and chat to support others.

I am back to this website after 3 years.

I had learned a lot in the past and continue learning with so good members.

Thank you.

[agapepilgrim in reply to Eksel]

The rat poisoning is a story in itself that sounds terrible. There are many causes of MS, it’s still a mystery. I did a lot of research, also, but this year I give up. I don’t compare my MRI photos anymore and where the lesions to control of memory and decision making and speech and all those things. It satisfied me on why I do what I did but I knew it wouldn’t do any good to give a print out to family and friends. They still wouldn’t understand. It’s because we don’t “look disabled.” I guess if we were cross eyed, tongue hanging out, dribbling, nose running, a few sores on the face- they would believe we were “nuts.” But sad thing is we are not nuts! We just forget things, and the words in our minds won’t come out our mouths when we are speaking, we wobble when we walk, we laugh when we should cry, we get angry and spit fire when we should brush it off— but we still get up every morning and smell the roses. Stay with us. Agape.

[Eksel in reply to agapepilgrim]

Wow, you just explain exactly what happened when try to show the MRI to others or even try to explain together.

It's like taking to an alien from Marte. It's like that, never ever believe in anything if is not an Look disabled face and behavior.

The ignorance will not change in any place in any Country.

Thank you for the detailed information.

[2littletime]

Not much I can say...so sorry for all the difficulties you are facing.😥 I will keep you in my prayers 🙏

[Eksel in reply to 2littletime]

Spiritually level counts to improve any life in any location.

It doesn't need to be near by.

Good carma, good spirits, good energy, good positive vibrations all will influence my recover to higher level positive thinking and cleaning body.

Thanks again

[MarkUpnorth]

So sorry, I like so many with ms have lots of invisible symptoms. It gets easier as you get worse? Because it doesn't seem to matter? Except when you try and do something you should know like the back of your hand, but can't without lots of research and or sticky notes. And the talk about the missing brain, anyone know where mine went?

[Eksel in reply to MarkUpnorth]

Thank you for your objective clear explanation of the inside the brain-body system.

I think the same.

Who cares besides me and my own research.

I survived learning by myself all possible updates from MS in the Medical, Biotechnology and other Pharmaceutical Company.

My day started in different chapter.

When open my eyes, I do not have one drop of energy.

Then I started taking my multi combination of prescription and Supplement from Neuroscience research. Being careful for don't take one and another close by each other's. The results can be an awesome transformation of I do not have any inflamação in my body as a chronic sinusitis or Asthma.

When and if I am in low brain inflammation then I am able to be functioning from afternoon to evening.

But still have the overload of exhaust if doing or trying computer or driving or grocery shopping.

I said to others that I do not have brain either. They do not believe.

I don't know where my brain went to as you said.

Thank you for your words