*Survey* Help please

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

*Survey* Help please

Postby NZer1 » Tue Jul 13, 2010 2:53 pm

Hi every one, Hi everyone, I am doing a survey as part of a study contribution for IRB aproval of CCSVI treatment. There has been some unanswered questions about the process of MS disability that may help with understanding the vascular conection.
Firstly I am PPMS and have had symptoms for about 10 years.

My question is; when you have a new symptom or an exacerbation of your symptoms does it happen over night or during the day?

www.surveymonkey.com/s/5D8HHDC

I have often noticed the change during my day but have always thought that the change happened when I was sleeping and noticed the change during the day. I think that people with RRMS can answer this more accurately and I think it is part of the puzzle to MS that hasn't been answered, yet to me I believe it is an important link to CCSVI.
When a person has a major sudden onset of symptoms and they have an MRI there are sometimes many lesions seen, yet the symptoms happened 'overnight'. How can so many lesions be there and yet the symptoms onset happen so rapidly? If you have any insights please can you add them below.
Thanks for your help and input.
Take care, Nigel
Last edited by NZer1 on Wed Jul 14, 2010 3:43 pm, edited 1 time in total.
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Postby Bethr » Tue Jul 13, 2010 3:25 pm

I have had one sudden event (is that CIS?).
For about 5 months before the "event" I got progressively fatigued, heavy, stiff sore joints, sleeping in the afternoons.
Visited the doctor at that point, and got a huge range of blood tests.
Only thing untoward was high iron levels and transferrin saturation.
Two weeks after the blood tests I had the sudden event.
Woke up in the morning unable to use my right hand, couldn't write my name, pick things up. The hand went totally numb in the shower or when I got too hot. Got MRI, one lesion had formed in the area of my brain that correlated to the hand. The hand got slowly better over the next year. Iron levels slowly decreased, but still high. Fatigue stayed.

Two years on I decided to decrease my iron levels by phlebotomy. Fatigue now gone and pretty much back to normal.

(My sister has had MS for 20 years).
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Postby NZer1 » Wed Jul 14, 2010 3:46 pm

Hi, can you please support the survey, so far there has been 137 views and only 6 replies to the survey.
To make this worth while we will need to contribute!
Thanks Nigel
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Postby 1eye » Wed Jul 14, 2010 5:50 pm

I have not had a major new disability hit me (they usually were permanent) and last "official" relapse was Feb. 76 I think. But my two major ones started during the night, and were there when I woke up. I have recently started sleeping on a wedge, but two nights ago I slid down and lay flat.
For the first time in a while I woke up feeling very bad. Still feeling it, but it's waning.

The thing I think not enough emphasis is being put on is reflux. If slowed perfusion is bad, reflux is worse. I think heart-driven reflux is the worst, because it can go farther. Fortunately the solution seems to be the same.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby L » Wed Jul 14, 2010 6:29 pm

Done..
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Postby bestadmom » Wed Jul 14, 2010 7:46 pm

done
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Postby 1eye » Thu Jul 15, 2010 1:23 pm

i hope nobody thought i really meant 1976. I have significant problems typing and with my current excuse for a keyboard. Sorry, 2006. Meant to type 06. Nine was in the way. Plus my tennis racquet has a hole in it.

voted
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Thu Jul 15, 2010 1:38 pm

I am proud to say I was one of the original six. :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby NZer1 » Thu Jul 15, 2010 3:41 pm

Thanks Cece, I can always rely on you for your enthusiasm :D
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Postby NZer1 » Sat Jul 17, 2010 3:08 pm

I have copied the figures from the survey page and I don't yet know why the totals don't add up ??

Response Summary
Total Started Survey: 29
Total Completed Survey: 29 (100%)

Page: MS Symptom Onset Time
1. My question is; when you have a new symptom or an exacerbation of your symptoms does it happen over night or during the day?

Overnight onset of disability 41.4% 12
Morning onset of disability 17.2% 5
Afternoon onset of disability 17.2% 5
Other 34.5% 10

2. What type of MS do you have?

I have RRMS 62.1% 18
I have SPMS 24.1% 7
I have PPMS 3.4% 1
Other MS type 3.4% 1
I am not diagnosed with confirmed MS 6.9% 2

3. How long have you had MS?

0 to 3 years 13.8% 4
3 to 5 years 10.3% 3
5 to 10 years 13.8% 4
10 years or longer 58.6% 17
Symptoms suggesting MS 3.4% 1
Show repliesOther (please specify) 3.4% 1

4. Are you on any of the DMDs (Disease modifying Drugs) Betaferon, Avonex,Copaxone,Rebif, Tysabri?

Yes 41.4% 12
No 58.6% 17
Show repliesOther (please specify) 3.4% 1

5. Do you use regular exercise to help your MS symptoms?

Yes 37.9% 11
No 44.8% 13
Show repliesOther (please specify) 20.7% 6

6. Do you use IBT (Inclined Bed Therapy)?

Yes 24.1% 7
No 72.4% 21
Show repliesOther (please specify) 6.9% 2
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