Algis

Algis
Male
47
1998 SPMS
(Lesion locations (most affected side, if known), number of lesions:) ??

MS HISTORY AND BENCHMARK PRIOR TO INCLINED THERAPY
List all of your ailments. "Try to list every ache, pain, loss of sensation, loss of function or discomfort which troubles you and at what time of day it becomes worse. Expand wherever possible.

Paralyzed waist down, right arm/hand barely moving; last limb already weakened. Incontinence, Moments of "black conscious state" (<10secs), difficulties swallowing; constantly need help (wake-up, clean, change diapers, clothing....). Spasms, stiffness, clonus of the left hand (remaining functional limb).
I hope to think I have no cognitive problem

Please include any of the following that relate to your particular circumstances and delete those which do not:
Pain, aches, spasm, cold feet or hands, dreaming, poor circulation(?), loss of movement in limbs,
poor quality, finger/toe nails, absence of half moons on nails, loss of skin sensitivity, problems with balance, sensory loss, pins and needles, night sweats, cramp, bladder control.
Urine infections, bowel function, spasm, memory loss (short memory)

(No photo/NA)

Saving nail clippings and hair samples, dated for later comparisons is a useful analysis tool. Saving urine samples prior to tilting the bed for comparison after I.T. in first week will prove useful for you to make a comparison and comment.

(too late)

GENERAL GEOGRAPHICAL LOCATION:

Born in Europe, flat as Belgium. Emigrate to Asia (Taiwan) since 1988, living first in cities and now in a mountain area. No any opinion about that change; since I was diagnosed here (Taiwan).

MS treatments and results: Number of relapses in the first and second year before I.T. intervention:

Prednisolone, Mitoxantrone (3 injections), Methotrexate since 09/2004, LDN since 02/2008.
Vit.D3 started 2010/01/07 0.5g/2 days
Catheterized bladder for 18 months, been solved after LDN intake.
Surgery for cataracts due to steroids (Prednisolone) in 09/2007.

Before I.T. intervention
EDSS: 8.5+
FSS: N/R
MSIS: 121 (?)

Have you had a procedure for stenosis yet: Y
STENOSIS PROCEDURE HISTORY
Date/location of testing&procedure:


12.03.2009 National Taiwan University Hospital
Doppler
Diagnosis:
01.26.2010
No anomalies detected
But "standard protocol" was used

03.31.2010 National Taiwan University Hospital
MRx w/ Gadolinium (not sure what has been checked)
Diagnosis:
No stenosis reported in both jugulars.

IBT Journal:

Started 2009.12.27 @10cm
2009.12.27 => No signifying difference.
2010.01.07 => Blood pressure change? Cant verify.
2010.01.11 => Raised to full 16cm, no obvious changes.
2010.01.26 => No changes - But wife's feeling better Surprised
2010.02.05 => Legs and feet burning 'inside' during the day.
2010.02.26 => Legs/feet burning stop. Spasms and stiffness subsided.
2010.03.06 => No more burning. Spasms and stiffness remain high.
2010.03.10 => Nothing positive, nothing negative to report.
2010.03.20 => No changes.
2010.04.01 => No changes.
2010.04.14 => No changes.
2010.04.21 => Started sleeping with de-humidifier on.
2010.04.29 => No changes.
2010.05.13 => 3 weeks under de-humifier at night, no changes.
2010.06.02 => No changes.
2010.06.07 => Turned off DH and put back bed @ 0° - Slept equally well; woke up in same state.
2010.06.21 => No changes.


Last update
EDSS: 8.5+
FSS: N/R
MSIS: 121 (?)

(No changes noticed so far)

Algis that looks good to me and gives everyone a clear example of what we are looking for.

Thanks for all your help

Andrew

Hi Andrew; sorry went to hospital to get MRV results - Negative ( s401.photobucket.com/albums/pp92/algis/Medical/ ).

Spasms & Stiffness: IBT did not change it significantly; in either way. Some days I can stand it; some days it p*ss me off as I could almost go to bad mood.

Stenosis procedure: I did ~not~ had the procedure - Sorry maybe I have problems expressing myself. It has been 'initiated' as tests but the procedure will have to wait as they will not perform it without evidence of blockages in my veins. My azygos was not tested tho because it is not part of their 'protocol'.

The place is very humid. As an example Today the floor in the living room was wet with a fine layer of humidity, a bit like if you puff on a glass during cold day? It is high (~900 meters) and we are often in the clouds (literally). But it is very fresh and windy in summer; while the rest of the country is under air-conditioner 24/24.

Thank you again for your continuous help

Ok Now we understand why your not improving (hopefully)

Algis, get a dehumidifier asap and leave it running in the home at night while on the inclined bed. Close all windows and some vents if possible but don't close all vents if you use gas fired or oil fired heating. This is because carbon monoxide can build up because of backpressure in the flu.

Got a good feeling about this approach in your case.

Obtain a humidity meter also, these cost a few dollars maybe 3-4 for a good one

Aim for fifty% humidity or less constantly.

We have had amazing results using the IBT dehumidifier combination. This according to my theory on density changes, "which is undoubtedly correct " will not only increase the moisture loss from respiration but will significantly improve the circulation when your on an inclined bed.

Pauline from the very first pilot study experimented with the dehumidifier combo and proved beyond a shadow of doubt the link between evaporation and circulation.

She observed each time she used the dehumidifier and inclined bed by morning her paralysis / drop foot problem was resolved. Yet when she turned off the dehumidifer her dropped foot problem returned, This for me was one of the most excting results with regards to ms.

Andrew

Thank you for continuing looking after me Andrew.

I live in a pretty big house; and the living is completely open with big windows. We have separate bedrooms for my wife and I and for our daughter. Each has its own bath room and walk in cabinet. The kitchen itself (in the open too with a bar separating) is 3 meters wide and 8 meters long.
Insulation is non existent in Taiwan, as we live 300 days a year with all windows open. We do have dehumidifiers in each bedroom tho and starting Yesterday night we turned it on. There are no CO issues since there are soooooo many leaks that you'd have to put the fire on to commit a suicide :lol:

I am not sure 'how' I can keep the humidity control in the main living area, but I will inquire. If a system must be installed; it would certainly be out of proportions... But let's see.

I would gladly take any humidity meter you suggest; assuming they ship it to Taiwan and accept a CC/PayPal payment. If we have the same kind of measurement it might be easier to circumvent events?

I slept last night with the dehumidifier but noticed no overnight changes. we'll do it again tonight.

Thank you and have a great day!

It is now a week that the de-humidifier is on during the night. I cant still notice any change; except maybe a dry nose/mouth in the morning.

De-humidifying the living space is near impossible without major reconstruction... Replacing windows and doors It would be more realistic for me to move in the Gobi desert :lol:

Is there any de-humidifying body pill that I can take :rolleyes:

The dry nose and mouth means it is working to some degree Algis Are you shifting much water with it?
You will need to drink more water also to replace the extra fluid lost.

Is the pain still the same as before tilting the bed?

Andrew

Thank you Andrew.

I drink (most of the time) a glass of water before going to bed; since i'm a kid (old habit). I increased it to 1 "big" glass (too much will damp the sheets :lol: ).

The pain: I honestly believe it is now as it was before I try IB. I have had an episode when my legs/feet burned a lot; but it fade away... I may have a bit more stiffness but it is difficult to be objective since I am SPMS - I shall get worse anyway...

More as it come ; Cheers!!

Yesterday we decided to try to put the bed back to 0°.
We also turned off the de-humidifier; it has changed nothing and summer is coming soon; when we'll have to put the air conditioner anyway...

We both woke up this morning with no immediate nor obvious changes.

More later, thank you Andrew for your efforts