Hi guys well I started my lemtrada

[dastardly]

Hi everyone and thanks for your messages and thoughts. Ok so I went to my neurologist appointment with regards to my blood results he said he also received the text messages and that if he doesn't respond to them and enter a code number he receives the message every hour until he does and he said don't panic about results if they are of concern he will ring me with instructions about what to do, so I felt reassured.

I had my 3 month botox injections for headaches thank goodness as the headaches were just starting to return, If anyone gets a lot of headaches I can recommend this corse of treatment, it stings to have the injections but worth it.

We talked about the lemtrada treatment and he said it is too early to see any difference yet but I'm still very positive, I feel no different having had this treatment so thats good I thought I would be a lot sicker take care guys keep well Craig

[Carolinemf]

Hi Craig,
Thanks for sharing your experience.
Have not been on msw for a while but wondered how you were going.
I've shelved Lemtrada for a bit for a few reasons. My main concern is that my platelet count average is 120- 125 over the last few years. The highest it has been is 170 in June. I'v been referred to a haematologist.

I hope you continue to improve.
All the best.

[dastardly]

Well guys it has been a year already time has come for my next infusion of lemtrada, the past 12 months haven't been the miracle I had hoped for,

My disabilities in walking have become much worse as has my entire right hand side, I spend most days feeling sorry for myself, not the "why me's" just I wish I could do this and that,

I am a tradesman with years in the mining industry as a fitter welder working in hydraulics my hands were my life now I can't even hold a knife (see I'm feeling sorry for myself) anyway I am still hopeful that the second infusion becomes the miracle.

Anyway next infusion in a week and I will try and report how Im feeling after that take care Craig

[JerryD]

Hi Craig/dastardly,
I am scheduled for my second round of Lemtrada, in January. I am really happy that you chose to post about your experience and expectations. Thanks.
Before my first round of Lemtrada, my neurologist and I spoke about the drugs mechanism of action. He told me ,outright, DO NOT expect a return of my former functionality! I, also, worked in a job that required finer controlled movements of my legs, arms and fingers. Like you reported, I feel I am losing much function of my arms and legs.
The main thing that I want to acheive from Lemtrada is a halt of MS progression. I hope you get a break. Good luck

[dastardly]

why is it so
my mrs results show no new lesions and my neurologist tells me my MS is stable not getting any worse, but my symptoms are, why?
also I have a new GP doctor as my last Dr for the past 17 years has retired this new Dr on my first visit said he would not prescribe "targin" ( controlled release oxycondone) I have been taking this for pain
I had a motorcycle accident a few years ago and broke some bones (2 vertebrae, 6 ribs, 2 collar bones, 2 fractured eye sockets, still have a broken collar bone the Drs won't touch

Anyway my new Dr has taken me off the pain meds and now after 8 days off the drugs after tapering off them for the past 4 weeks I can hardly get around, I can't believe how much pain Im in, my neurologist wanted me to stay on the "targin" because I was stable but the local Dr said I write the scripts I decide what you take, and I agree that long term opioids isn't good for you, so off to the Drs again today and see what he can do about the pain Craig

[KoKo]

why is it so
my mrs results show no new lesions and my neurologist tells me my MS is stable not getting any worse, but my symptoms are, why?

Craig, this short article called "Physical Disability May Not Be Directly Linked To Brain Lesions" talks about how some persons with MS have high lesion load/low disability and others have low lesion load/high disability.

http://www.ms-uk.org/physical-disabi...sions-230617-0

This dissociation between brain lesions and disability may be explained by the type of MS one has, brain atrophy, and cervical spine lesions.

Do you get cervical MRI's too, or mostly brain MRI's?

I have PPMS, and never had a lot of brain lesions, but do have cervical spinal cord lesions.

Take Care

[dastardly]

Hi koko

Hi KoKo thanks for your response yes to the mri scans, cervical spine, spine and brain but will recheck past scan results to be sure Craig

[KoKo]

Anyway my new Dr has taken me off the pain meds and now after 8 days off the drugs after tapering off them for the past 4 weeks I can hardly get around, I can't believe how much pain Im in, my neurologist wanted me to stay on the "targin" because I was stable but the local Dr said I write the scripts I decide what you take, and I agree that long term opioids isn't good for you, so off to the Drs again today and see what he can do about the pain Craig

Hi Craig,

So sorry that you've been in so much pain.

Did your doctor figure out a way to help you?

Wishing you some relief from your pain.