Two updates in very close succession, part one
Six years ago I started taking doxycycline, closely followed by roxithromycin. I have not had an adverse MSi event since then and in addition I have had many improvements, the main one being for me, the return in function of my right arm and hand, meaning that I was able to resume my career as an artist. Two years ago I finally finished treatment and after that time I have still continued subtle improvements, however, I tend to still classify my EDSSi rating as 2, because my motor skills can vary so much throughout the day. I have said for the last two years that my main enduring problem was not being able to lift my right foot very far, making it impossible to get easily on and off my bicycle. However, I had another problem, not nearly as bad as some people with MS get, but annoying nonetheless. I would lose count of how many times I would have to go to the loo every day and would wake up four or five times in the night. Other people like Kim, lost this sense of urgency quite quickly, but with me it remained. I must know the exact placing of every WC in town and which restaurant has the best and most facilities. I have always disliked the idea of catheterisation because it can lead to interminable UTIs, which is one thing I have never suffered from. Thinking back, this is one of my very first MS symptoms from back when I was in my early twenties, so I suppose its not surprising that it has taken so long after starting treatment to right itself, but right itself it has done. I am now sleeping better than I have done for as long as I can remember, waking up at most once during the night. During the day old habits die hard: I still might feel ever couple of hours that I must use the loo, but if I choose not to, I can wait for at least another hour, sometimes waiting four hours in total. Never having suffered from retention problems I at first thought it might be retention rather than improvement, so I have been testing myself for the past four weeks. Not only can I hold going to the loo when I feel the need, I can also stop and start at will, so no problems there. Another improvement which was already in train is being able to hold both hands pointing upwards for at least quarter of an hour without my right hand gradually folding towards my wrist. This was getting better before but never for so long. Who knows, perhaps next I'll even be able to get on and off my bike without the danger of collapsing, bike and all, to the ground. I mustn't be too optimistic, though since such nerve repairs aren't supposed to happen so long after the event.......................Sarah (I have posted this on ThisisMS as well.)
An Itinerary in Light and Shadow
- Sarah's blog
- Login or register to post comments
- Email this page
- Printer-friendly version
Comments
Nancy, I've done them
Nancy, I've done them all!!
Thank you Wiggy: I didn't wake up for the first time unril it was nerly time to get up in any case. I'm sure it makes me happier in the day!
Ron, that is such good news about Dianna and her improvements following her brain tumour
...........Sarah
An Itinerary in Light and Shadow
Wonderful, Sarah. My
Wonderful, Sarah.
My son-in-law suffered considerable CNSi damage from a West Nile Virus infection a few years back. He also found improvements happening long after they were supposed to be impossible.
Dianna developed a blind spot in her visual field following removal of a brain tumor this past year. Her Neuroophthalmologist was very surprised to find substantial improvement between her 3 and 6 month checks -- again, it should have been too late to expect improvement.
I guess we don't know very much about nerve recovery.
Anyway, I am glad to hear that this extremely inconvenient symptom is improving for you.
Ron
Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Began rifampin trial 1/14/09
Currently: on intermittent
Sarah, This is great
5oo mgs Ceftin 2 x/day, 500 mgs biaxin, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.
Well, I wish frequency was
Well, I wish frequency was my problem. When I am sick or flagyllating I can lose all sensation and all control over my bladder. Bowel control can be tricky too.
Every time I pulse I pray that energy and continence will be affected. And since my experience is that the things that get worse during a pulse are the very things that are being battled by the abxi, it seems as though incontinence should eventually be a thing of the past. Now, if I could only tolerate the pulses! Or even NACi!
I employ certain strategies to avoid embarrassing myself (don't think of or look at the loo; keep your eyes looking upward; unzip before you get there; if teaching, go after 1.5 hours even if you don't feel you have to; no caffeine). Sheesh!
Raven, with me the urinary
Raven, with me the urinary frequency was just MSi, pure and simple and it started at about the same time, in my early twenties, sometimes better than others but always slightly there, until I changed to SPMSi then it just got steadily worse until I stated abxi but I had had it so long, although it got a bit better it never completely went. Then, one day, click and it was gone!
By the way, we eat loads of toasted pumpkin seeds with pasta
............Sarah
An Itinerary in Light and Shadow
This is great news, Sarah.
This is great news, Sarah. What a wonder that you continue to improve. In one of the recent issues of Life Extension magazine, they had an article about pumpkin see extract for bladder health.
Here is the link.
I have had similar problems with needing to go often in the day. I usually can sleep through the night if I don't drink water before bed. (Age probably has something to do with it also as I am 58.) I just got some of this supplement but haven't yet tried it. I find that during Tinii pulses the problem increases and between them it is not a problem. I will post when I get around to trying the Pumpkin Seed extract.
Great news about your hands getting better. Can't wait to see the new painting!
Raven
Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath
Great news Sarah! Hope to
Louise, solid sleep is
Louise, solid sleep is important: I didn't realise how important until a couple of weeks ago. Yes, I still take most of the supplementsi, although not every day. I take NACi every day, though, also salmon oil, B12 and D3 and chlorella.
My next update involves paintings, but its too dark today to photograph anything.....................Sarah
An Itinerary in Light and Shadow
Wonderful news Sarah.
Wonderful news Sarah. Solid sleep is so important. Are you still taking most of the supplementsi on the list? Good nutritional support could surely support healing. I know you have talked about healthy diet in the past.
I am looking forward to part 2 of your update when you get around to posting it.
Thanks for the update, Louise
Thank you everyone. Its
An Itinerary in Light and Shadow
Hooray - I've just done a
Hooray - I've just done a little jig for you Sarah! And thanks for sharing - these reports are so encouraging for those of us near the beginning of treatment.
RRMsi diagnosed 2008 (symptoms for 20 years). Also sinusitis, recurrent UTIs, IBS Wheldon protocol began 31/7/09 Doxyi 200mg, Azithro 250 3X week. Supplementsi B12, D3 Vit C, multivit, Fish oil, probiotics, NACi, vit E, turmeric
It's really very nice to
It's really very nice to hear all that. Gog bless you.
yılmaz.
KEREM'S TAKECARER;
Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.
How exciting to hear the
Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
"shift - return" makes the
Why do I always have trouble
An Itinerary in Light and Shadow
Inspiring. God bless you