[Nicky Chids]

Hello

This is scary.....

I have Lupus with CNS (cerebral Involment) and am 1/2 way through Chemotherapy for this.

This is the 1st time I have written about this or admitted it to anyone I do not know.

I would just like to speak and hear from anyone, who is like me a fellow lups owner, and would love to hear any news and tips to deal with Chemo. I understand that talking about these things is not easy and that some things I will be told may not be nice, but I would like to know and discuss things with like minded and understanding individuals.

So if you are out there please reply as I really want to hear from you ASAP.

Thanks

Nicky :wink2:

 

[Katharine]

Hello Nicky and :welcome:

You have come to the right place for support and advice. We have a few members here who have been through chemo treatments and I'm sure they'll be along soon to say hi.

If you have a specific question such as "how to deal with chemo side-effects?" it might be best to post a question in the medications forum as some members don't read the introductions section.

It's not easy to suddenly come out and talk about your lupus but you have certainly come to the right place to do so. I'm sure that you'll soon get to know lots of wonderful people here

Bye for now,
Katharine

 

[Nicky Chids]

Thank you.

 

[lazylegs]

Welcome to the site Nicky.

I am sorry to hear you have cerebral involvement. I was wondering what symptoms you are having as each of us presents differently. Then others with similar symptoms can share their experiences.

Good luck with your treatments.

Take care,
Lazylegs

 

[Nicky Chids]

I have had a range of symptoms over a long period.

I have loss of facial control om my left side and hearing too. I have to self catherterize as i have lost the control of the nerve to this area.

I also have problems with walking and controling my legs. I have a tendancy to veer to the right.

My memory is really poor. names, words, people and places all gone. It is so emarrasing seeing a really good friend and you can not remeber their name, or how you met.....

I can not read a book any longer as i can not remeber what was on the page I just read and also I can not follow written instruction anymore.

I worked for a bank and my Maths skills were high now i can not recite the tiomes tables and therfore have severe difficulty with maths.

I have to say i am emotional now wher as before i was not, and i would say that i have to be careful what i watch on TV etc as the wrong type of stimulation can lead to tears and a feeling of being low. Hopwever too much excitemnrt can be bad too and lead to over exuberence. both of these leasd to massive headaches, my ruummy says this is because of the chemical reations in the brain not being metabolised properly due to active inflamation.

If you wonder how i am writing this i am being helped by my wonderful family, without therir help i woukld be lost.

I worked full time up to a year ago now I have to either walk with a stick or use a wheelchair.

Like i said before anyone want to share any information with me please do as i am new to all this.

Nicky

 

[lazylegs]

Hi Nicky,

Thank you for the update on your symptoms. You are definitely dealing with a lot right now. Fortunately you have a supportive family to help you through this difficult time.

I don't know which chemo you are taking but I can offer you some hope. Once the disease is under control some of your issues might lessen. My mental issues definitely improve. The thinking is more clear, the memory improves, the speech issues improve, I can actually read a book for short periods of time with comprehension and retention. Things aren't perfect but others wouldn't suspect unless they were looking for the issues.

Depending on how bad the damage is to the nerves, there is always a chance of regeneration. It takes time though. Reading about your legs and your having to self catheterize I was wondering if the doctor also did MRIs on your cervical and thoracic regions of your spine. It is rare, but transverse myelitis can be found in some Lupus patients.

I too have difficulty with my legs. Some days I can walk with an aide and others not. I really have to listen to my body to keep from crossing the fine line that will land me on the floor. Yoga and walking have helped with my strength and balance issues. Others find workouts in a pool beneficial. You say you veer to the right, I go to the left. My neuro claims it is a brain, nerve and muscle miscommunication. Going more slowly and visualizing each step can help.

My emotions and the headaches calm down with treatment also. Now if I am on high doses of Prednisone the emotions are unpredictable. Once I taper down things are more normal.

It sounds as though your doctor is going after things aggressively. I hope you will begin to see some improvement soon.

Take care,
Lazylegs

 

[c3c4]

Nicky

Hi only just joined but been dealing with Cerebral lupus for long time.Not me but my wife shes had it about 13 years now,quite severely.Can only suggest it will get better over time,with the proper treatment. i.e. cyclophosphamide,my wife had many,many infusions of this ,was ,awful at the time, but saved her life.Many complications afterwards,but.......is now on MMF for about 6 years now and has been very well since,everybody is different but hope is there.If you wish any help get back,only to pleased to help.
Regards
c3c4

 

[Nicky Chids]

thanks for the above am on cyclophosphamide now and it is no fun at all. wiating for next spect scan and deep resolution MRI then will know more, however all symtomps are as before so wait and see.