Poster session papers are often just published as abstracts and aren't peer reviewed.CureOrBust wrote:Anyone know where one could purchase the full article? was it published? I would of thought that it was a requirement for the presentation.
I felt incredibly energetic, and pushed my body farrrr too hard. I worked nearly 2 weeks straight on a project as I felt up to it - and I crashed hard on friday. I lowered my dose to 1.0 - 1.5 IU to see if I could handle being on a cheaper dose - however, learnt the hard way not too.
I felt some numbness re-appear in my feet which was minor, it began approx. thursday last week. After resting up and 2 more days of 2 IU's it appears to be subsiding itself - no other symptoms have returned. I am not concerned about this, as it's clearing up no problem, and I was still able to work a 6 hour shift last night as a sports photographer, which is physical work and requires a lot of running. It was hard, but not as hard as it was a few months ago.
I put this down to stress, lack of sleep, and my own fault for not looking after myself as good as I should have - thinking I was superhuman, when I'm not. I will just take it easy(er) from now on.
I caught a cold off someone at work which I am fighting fairly well, and I also think this is partly to do with this minor pseudo-exacerbation. It's not a new symptom and my feet are still nowhere near as numb as they were a few months ago - it's just returned in a few small patches. It feels like there'a shoelace stuck under my foot, if anyone knows that feeling.
Anyway I'll carry on since it's improving and pay special attention that it's not worsening.
PhireX wrote:2. http://www.mstrust.org.uk/atoz/edss.jsp - "4.0 - Significant disability but self-sufficient and up and about some 12 hours a day. Able to walk without aid or rest for 500m.". This is the most accurate guess based on how I felt prior to hGH and not what the neurologist said - he hasn't told me an EDSS.
Could you actually run at all previously? I am around an EDSS 4, but I have Ataxia which stops me from being able to run. I work-out a LOT so do not have any visual identifiable muscle wastage, and my legs even look like I obviously work out. I have also surprised a Dr when he checked out my leg strength; ie I guess he felt the strength was "normal" or even better.PhireX wrote:...I was still able to work a 6 hour shift last night as a sports photographer, which is physical work and requires a lot of running. It was hard, but not as hard as it was a few months ago.
You said you would estimate an EDSS of 1.5 now. What Functional System do you have an issue with when the rHGH is working well?
I also have a cold/flu right now. I have had it for over 6 weeks! It was weird as every week it would "die down" a little, only to re-appear in a different form the following week. eg The first week it was a sore throat, which got less painful over the week, but then just as it was almost gone, it turned into a runny nose and sneezing, followed by a chest cough the next week, with no sneezing etc etc Anyway, this type of thing is also normally a trigger for my relapses, which a prednisone stint helps, after the infection has gone. Basically speaking, there are some ugly bugs out there this year. I have been to docs and got antibiotics and a puffer (to clear chest), and feel much better now.PhireX wrote:I caught a cold off someone at work which I am fighting fairly well, and I also think this is partly to do with this minor pseudo-exacerbation.
Sorry, getting a bit off topic above, anyway, I do not think this is a pseudo relapse if the relapse stays after the cold/flu symptoms are gone. Also, you will read many places that an infection is commonly a trigger for a real relapse for many MS sufferers.
For future ref, I also personally keep a "stash" of Tamiflu in case I have a viral infection, and use Amantadine regularly to limit getting an infection. ie stop a relapse before it can be triggered.
The numbness is clearing up pretty rapidly, I've had it there before, so it's not a new symptom. AFAIK old symptoms just flaring back up, is not a relapse.
It's hard to explain but it feels like since I've regained feeling in my foot, I can probably feel the localised numb area better than before. I wasn't paying that close attention, its nothing major.
My EDSS ratings were simply my best effort guess - the weakness in my legs was preventing me from doing a lot of activity - since my legs have strengthened up I feel a lot more stable, my left leg which was almost completely useless feels stable again (balance returned) & the muscle in my back which felt like it was contracting my entire left side seems to be releasing.
I will update in a few weeks when things pan out - rHGH is supposed to begin working at 4 weeks, and be in full effect around 6 - I have just passed the 4 week mark. So I will report in on my sixth week - and keep in mind this is my personal diary as well, so if I ramble on, that's just my personality.
Has my scan
3. Stayed about the same
4. Changed - but not worse, or better.
I will post the .JPG's and contents of the CD's so you can all look into my brain and draw your own conclusions. I'm not sure if there's any publicly available MRI data on this, but I'm happy to share.
I am hoping before and afters?PhireX wrote:I will post the .JPG's and contents of the CD's so you can all look
Did you previously have any issues with balance, ataxia or fine motor control or ON? If so, have they changed?
I am trying to understand if its simply with the big muscle actions that have changed. I guess the skin tingling would be one example that is not related to muscle strength.
I have an MRI done in Mar 2015, this was after 4 years of no DMD's at all - no prednisone, no interferon, or any of the newer medications.
I will get an MRI done around Oct 2015, to compare. The only difference will be starting on hGH around early July, 2015.
The below excerpt from the following website, pretty much explains my situation - I over did it, and probably suffered a partial relapse. It hasn't got worse, and I also noticed I was bitten by quite a nasty(?) spider, right on the butt - two fang marks. No, I will not post photos of this - and I am unsure what species it was. I need to take a 'moon selfie' and inspect it further, it's in a pretty awkward spot to see. Sorry for the TMI.
I remember 13 odd years ago, I noticed a spider bite on my chest and a few days later my legs went numb. I can't find much information on neurotoxic spider bites and multiple sclerosis relapses, but I'm open to any links or info people may have - it could have simply been triggered by this. It would make perfect sense and was pretty unlucky timing. Regardless, it's minor but it's worth noting.
I wasn't as disabled at this guy, but I was on my way.
The below website was something I found, but I'd consider it 'heresay'. But it's pretty close to my experience. I'll post it for S&G
"Real improvement began, however, when one of his neurologists, at my suggestion, agreed to put David on growth hormone. His blood levels of IGF-1 increased. And his improvement was startling. His eyesight and coordination greatly improved. He had far less fatigue and greater endurance for physical activity. He could walk reasonably well for short distances and was no longer bedbound. He was still leading a very careful lifestyle, and, if he began to overdo things, he suffered a partial relapse, but, by and large, he was a far more functional person than he had been before the start of growth hormone therapy, and this improvement has now continued for more than a year."
Update: It's a pseudo-relapse. The numbness is not new. It subsides in the cooler weather and when I take a day off (take it easy). I got a cold, and an infectious bite from some critter (I'm Australian, we have lots of nasty things like that). I am on broad spectrum antibiotics and things seem to be clearing up super rapidly.
The best thing to do at this stage I figure it ride it out (it's getting better) and wait for the MRI. Otherwise we're all just speculating. Also, with the new technology that the RMH (I've been in studies there, the royal Melbourne hospital, Australia) I may contact my old Neurologist if my first scan is successful, and they can use me as a human experiment. I will happily give up my body if we figure something out. I simply conclude - hGH is something we need to 'explore further' in regards to MS. I've put much worse chemicals in my body before, trust me.. and it was so much fun!
Check the following post in the Forums FAQ thread for helpful tips on posting images to the forum.PhireX wrote:Of course, I can post my full brain/spine MRI's - I will provide a public Dropbox link or something.
http://www.thisisms.com/forum/site-supp ... tml#p40760
I would be talking a few hundred pictures, and several hundred megabytes. This isn't really ideal for a forum - but if people are smart enough to take two images, and compare them etc - they are more than welcome to post findings. I don't expect that though. I am not an expert at reading MRI's, but I know some people are. (It's what the cool kids are doing these days )
I am au fait with the [IMG] option but this won't really achieve what I want to achieve - allow people to view the raw data.
They perform a blood test before prescribing to make sure your thyroid function is fine and that you are at no risk of cancer.CureOrBust wrote:The clinic prescribing this for you performed some blood test before they did prescribe it, and also some to monitor you. Do you know specifically what they looked for before they prescribed it? and what they are monitoring now? (apart from IGF-1)
I will have to re-visit my bloods to tell you specifically what tests were done but it's pretty thorough - they are mainly concerned about thyroid, lymphoma and other types of cancer - it's a very small risk on a therapeutic dose - 2 IU's,
If you were saying 4-6 (or 8) IU 6 x weekly, then you are putting yourself at a large risk of having adverse affects, but these people generally 'Cycle' on it for maximum bodybuilding benefit, however as it's noted with all cases - after stopping the cycle, you quickly go back to the way you were.
I appreciate your concern and let's not get off topic here, but in short - I've worked on computers since I was about 5 years old, I'm now 32 - that's 27 years - the JPG's themself have no data flattened on it, and the metadata which the program reads from can simply be stripped.NHE wrote:I guess as long as you don't mind them having your full name, date of birth and medical record number. It sounds kind of risky though.
If you have concerns about my personal information, etc please shoot it in a PM. It is a worry.
Back on topic,
I got an IV dose of Broad Spectrum antibiotics last night and the numbness basically disappeared so - yeah it was either the cold, the insect bite, or a combination of both. Either way it wasn't an official relapse.
Pilot trial of growth hormone (rhGH) for remyelination in multiple sclerosis
http://www.trm.uni-leipzig.de/en/resear ... anguage=en
Most pharmacies do not have the supply company as one of their regular sources and thereby cannot fulfill the prescription . I found a pharmacy willing to call the manufacturer directly and place the order. I'll of course let you all know how I go.