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| Author | Post |
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scooker48
Member in Phase 3
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Posted: Fri Feb 29th, 2008 16:46 |
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I hear strains of Beethoven's 9th symphony singing for Barb and all of us.
Hallelujah, HALLELUJAH, HALLELUJAH.
Your fellow MPer,
Sherry
____________________
Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 04/07/08 D25 <7.0 L, Liver function normal 4/08; Wear NoIRs outside & for computer screen time. No K creme used.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19445 |
| Status: |
Online
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Posted: Sun Mar 2nd, 2008 11:04 |
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9pm Sunday 2nd March
MP meds: no regular abx from July 1st 07
no abx
Other meds: Insulin 17u/s BID. blood sugars stable.
occasional panadol for slight headache.
NP
Light exposure: tint, blinds and drapes over windows. no going out.
things I have noticed: I can now read some of the newspaper with some ease.
while sitting I was able to lift my leg out straight. previously I needed assistance to lift it at all.
I feel that there may be a change in the neuro/pins and needles in 2 L fingers.
I feel that there may be a change in the neuro/numbness of my feet.
I 'desire' to get on the treadmill and walk and walk and walk - Reality is I did 40 seconds pushing. - but there is a desire.
bottom pain - less but still very sore. there was a big blood loss, so I stopped all meds 24H as that helped last time. less loss today.
hands and knees particularly sore, but slightly easier than last week..
hair: loss ++ continues. remaining hair very thin and feels dead.
hair on legs regrowing after months of not.
eyes: blurry. some dry burning.
ears feeling wet itchy, sore, swollen. throat sore, esp R.
Face and ears: grainy like sandpaper.
nausea : milder but still present, escalates when needing to rest from short term exertion - computer, phone etc.
esophageal: burns, relieved by meal.
easily chokey. taking care
chokey cough
Diaphragmic/Gall area: immunopathology.
abdo muscles: immunopathology
Legs go to sleep when sitting on my computer chair.
R upper leg: has a numb area on it to almost match the numb area on the L upper leg.
lower legs and feet: layer of thick skin continually.
skin: graining etc. patches of dry.
still itch all over.
I have 'this' cream on here, and 'that' cream on there, etc etc..
Resting as required, yet also restless/uncomfortable/insomnia continues. Have to be on 3 pillows or in recliner to try to sleep.
shower with help, sitting down
weakness, walking: is more like toddling or 'old lady gait'. walking short distance just to where I need to go inside house. too weak to stand in one place. still unable to get meals or dress self. * treadmill is available- wouldnt be doing 1 minute total per week yet.
feet, toes, numb may be improving..
toenails continue to become inflamed. grow into/under the skin on each side
2 little fingers L hand: numb/pins and needles continues. difficult to close into fist. may be improving.
tops of hands: grainy feel.. perhaps sunspots being dealt with.
fingernails: ridges across nails.
:both jaw joints hurt when biting down. esp R -slightly better
all joints affected. can hardly move when getting up from chair or bed. stiff and achy. no relief from MP meds. debilitating. hands weak and sore.
Feet and lower legs: are pufft.
skin on top of feet > inflamed and sore.
Full body swollen continues. L abdo noticably more. ?weakened muscle
R middle finger/nail - inflammation decreasing
dizziness on change of position. taking care..
Insomnia.
Physically uncomfortable. managing.
Thank You All, and best wishes.. AB..
Add: Monday 5pm. high level immunopathology.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Deb Grabetz
Member in Phase 2
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Posted: Sun Mar 2nd, 2008 12:05 |
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Barb,
After following your thread for many months, I am thrilled (no matter how small they might seem) to see some positive changes for you...you are such a role model for all of us on MP...and I find it hard to believe that anyone would give up on healing after reading one of your posts!!
I nominate you as the MP POSTER GAL for 2008!!
BARB MP POSTER GAL 2008
God keep you in his ever loving care...Hugs my Friend, Deb
____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Pundun
Health Professional
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Posted: Sun Mar 2nd, 2008 22:49 |
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Dear Barb,
Pleased to hear about those maybe positive changes. Could be a speck of light on the horizon. Fingers & toes crossed for you from me.
Pundun
____________________
CFS. IBS, hypothyroid, rickettsia, 125D73, MP 1/07, ModPh2 4/07, 3AbxModPh2 6/07, Ph2, 9/07, Ph3 2/08, Noirs, limited outings covered up, low lux home, T3, Calcium, HRT, 25D10
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19445 |
| Status: |
Online
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Posted: Sat Mar 8th, 2008 21:42 |
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7.30am Sunday 9th March
MP meds: no regular abx from July 1st 07
no abx
Benicar 40mg as needed - varies
Other meds: Insulin 16u/s BID. blood sugars stable.
occasional panadol for slight headache.
milk thistle BID
NP TID
Light exposure: tint, blinds and drapes over windows. no going out.
bottom pain - has been very sore.
hands and knees particularly sore. difficult to get up.
hair loss: seems to be slowing. remaining hair very thin and feels dead.
hair on legs regrowing slowly or not growing.
eyes: blurry. some dry burning.
ears feeling wet itchy, sore, swollen. throat sore.
Face and ears: still feels like a grainy facemask. cannot wash off or peel it off.
nausea : milder but still present, escalates when needing to rest from short term exertion - computer, phone etc.
esophageal: burns, relieved by meal.
easily chokey. taking care
chokey cough
Diaphragmic/Gall area: immunopathology. RUQ more swollen than L.
abdo muscles: immunopathology
Legs go to sleep when sitting on my computer chair.
R upper leg: numb area on it has a funny feel to it now.
numb area on the L upper leg.
lower legs and feet: layer of thick skin continually.
skin: graining etc. patches of dry.
still itch all over.
Keep falling asleep when on recliner in front of television. Resting as required, yet also restless/uncomfortable/insomnia continues. Have to be on 3 pillows or in recliner to try to sleep.
shower with help, sitting down
weakness, walking: is more like toddling or 'old lady totter'. walking short distance just to where I need to go inside house. too weak to stand in one place. still unable to get meals or dress self.
treadmill: none this week with high level symptoms.
feet, toes, numb may be improving..
toenails continue to become inflamed. grow into/under the skin on each side
2 little fingers L hand: numb/pins and needles continues. difficult to close into fist. may be improving.
tops of hands: grainy feel.. perhaps sunspots being dealt with.
:both jaw joints hurt when biting down. esp R -slightly better
all joints affected. can hardly move when getting up from chair or bed. stiff and achy. no relief from MP meds. debilitating. hands weak and sore - painful to bump.
Feet and lower legs: are pufft.
skin on top of feet > less inflamed and sore.
Full body swollen continues. LLQ noticably more.
R middle finger/nail - seen to /dug out again as inflammation flared this week.
dizziness on change of position. taking care..
Insomnia.
Physically uncomfortable. managing most of the time.
I need to say what it is that I want: to be able to walk, and stand to do things, and go out in the car, go to the shops, go to see my kids, my parents, go to my beach for a walk and a look, to go on holiday etc
Thank You All, and best wishes.. AB..
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19445 |
| Status: |
Online
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Posted: Thu Mar 13th, 2008 22:22 |
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7am Friday 14th March
MP meds: no regular abx from July 1st 07
no abx
Benicar 40mg Q5Hish
Other meds: home from hospital 13 weeks (was given 3 IV antibiotics together, and was in full light, no curtains) is now 9 weeks since last steroid med.
Insulin 15u/s BID. blood sugars stable.
occasional panadol.
Q TIDish
milk thistle BID
NP BID
Light exposure: tint, blinds and drapes over windows. no going out.
-cutting bottom pain - has been very sore. one blood loss+ again.
-hands and knees particularly sore.
-hair loss: continues. hair in a bad state.
-eyes: blurry.
-ears feeling wet itchy, sore, swollen. throat sore.
-Face and ears: still feels like a grainy facemask. cannot wash off or peel it off. looks waxy.
-nausea : milder but still present, escalates when needing to rest from short term exertion - computer, phone etc.
-esophageal: burns, relieved by meal.
-easily chokey. taking care
-chokey cough
-Diaphragmic/Gall area: immunopathology. RUQ more swollen than L.
-abdo muscles: immunopathology
-Legs go to sleep when sitting on my computer chair. has decreased.
-R upper leg: numb area on it has a funny feel to it now.
-numb area on the L upper leg.
-lower legs and feet: layer of thick skin continually.
-skin: graining etc. patches of dry.
-still itch all over.
-Keep falling asleep when on recliner in front of television. Resting as required, yet also restless/uncomfortable/insomnia continues. Have to be on 3 pillows or in recliner to try to sleep.
-weakness, walking: is more like toddling or 'old lady totter'. walking short distance just to where I need to go inside house. too weak to stand in one place. still unable to get meals or dress self.
-*showering myself, sitting down
-*treadmill: doing 40 to 80 seconds at a time when I can. sometimes once per day and sometimes twice. note: have to be assisted: onto, and off.
-feet, toes, numb may be improving..
-toenails continue to become inflamed. grow into/under the skin on each side
-2 little fingers L hand: numb/pins and needles continues. improving. difficult to close into fist.
-tops of hands: grainy feel.. perhaps sunspots being dealt with.
-stiff and achy all over. debilitating. hands weak and sore - painful to bump.
-Feet and lower legs: are pufft.
-skin on top of feet > less inflamed and sore.
-Full body swollen continues. LLQ and RUQ noticably more.
-body/skin elasticity etc damaged by disease beyond repair
-*R middle finger/nail - hopefully healed. a little inflamed.
-dizziness on lying down. taking care..
-occasionally I feel a bit down - the meds soon pick me up.
-Insomnia.
-Physically uncomfortable. managing most of the time.
As yet, I feel unable to reply to posts as I did before, but I am able to assist Staff in the background.
: Noting: re taste or diet immunopathology.
All the way thru MP I have experienced changes in what I desire to eat, and changes to the tastes of food.
When I was really ill some months ago, I couldnt bear to eat salads. unusual for me.
I went thru a long time of not wanting to eat any fruit. also unusual. and still dont desire some fruits. apples eg or anything that may be tangy.
and for many months now I havent been able to eat beans and peas.
I can manage only a small meal and am hungry more frequently.
:About saying in my last post what it is that I want: I have been thinking of how I was pre MP.
Even though I wasnt well for most of my Life, I was active in many ways, fighting to keep "above it". From the outside most couldnt see.
I have been noticably unwell (ie noticable to myself) for at least 27 years. It is 16 years since I was able to drive any distance. and my ability to function began to slide. I became unable to cook and clean. unable to be sociable - became a recluse. unable to make phonecalls. things I had previously done well. I had major depression and week long migraines.
Thank You All, and best wishes.. AB
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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shandym
Member
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Posted: Thu Mar 13th, 2008 22:37 |
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| I admire you Aussie Barb!
____________________
FM like Pain, disequalibrium,vertigo, constant dizziness, palpitations, tachycardia, visual disturbances,headpressure/headpain 125D29, 25D7, MP 11/07, TUMS, Valium, NoIRs, limited outings covered up
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Deb Grabetz
Member in Phase 2
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Posted: Fri Mar 14th, 2008 01:55 |
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Yes Barb isn't it amazing how we are able to function for years and years with so many ill symptoms? It is as if we "know" that we are ill all along with something OR that something is underneath our illness, yet didn't have an answer as to the causitive..
I have to say that some of my better times of feeling quite well, happened at two different times in my life-- both were after I left my office job for a long maternity leave and years later when I left for good --- no longer exposed to the heavy exposure of both sun and fluorescent lighting 50+ hours a week. We worked in an enormous office that was drenched in sun and fluorescent lighting. For those of you familiar with the term all glass curtainwall-- there was nothing but glass and small areas of metal framing on the entire facade of the building. Now that I've familiarized myself so much with the MP I'm aware of the affects that this type of lighting had on me. Incredible to have an answer for the malaise!
Barb you have incredible fortitude and are held in such high regard! ...and remind me to   on my difficult days...
Deb
____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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ShrnHml
Guest
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Posted: Fri Mar 14th, 2008 05:58 |
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"Even though I wasnt well for most of my Life, I was active in many ways, fighting to keep "above it". From the outside most couldnt see." ~AB
When you look healthy in someone else’s eyes, you have to have some kind of magic communication to get them to understand you are not well and that your life is changing and shrinking.
Most people don’t have that magic, and our attempts to explain draw dubious looks. Further attempts only create more doubt, and we become guarded about trying to explain. Thus we are doubly isolated….by the no-name illness and by having to pretend that we are okay.
____________________
Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Deb Grabetz
Member in Phase 2
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Posted: Fri Mar 14th, 2008 16:38 |
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ShrnHml wrote: When you look healthy in someone else’s eyes, you have to have some kind of magic communication to get them to understand you are not well and that your life is changing and shrinking.
Most people don’t have that magic, and our attempts to explain draw dubious looks. Further attempts only create more doubt, and we become guarded about trying to explain. Thus we are doubly isolated….by the no-name illness and by having to pretend that we are okay.
Well said! We are all guilty of not understanding what others go through--but this disease process tops it all-- the isolation is real--but only if we allow it! I truly have learned not to pretend anymore or make excuses to please someone else, was unable to keep putting myself through it each day. I found it hard to pretend when I was peeling myself off the sheets just to get up each day. I learned a very hurtful lesson years ago, when my own sister got in my face and told me there was nothing wrong with me! That lesson was...BE TRUE TO YOURSELF AND HAVE FAITH! We learn that those we had hoped we could count on, just might not be there when we need them!
I'm honest about my situation and have learned to say "no, I just can't do that today" without feeling guilty-- I am now, TRUE TO MYSELF! ...and in this process, I have found that those who have stood by me, who have the compassion to see through the healthy looking facade--are by far my greatest blessings....!
Last edited on Fri Mar 14th, 2008 16:39 by Deb Grabetz
____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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marion villa
Member in Phase 3
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Posted: Fri Mar 14th, 2008 21:41 |
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deb, shrn, barb all:
Thats true.... and let´s not forget that compassion must begin looking to ourselves, sometimes we forget that we also deserve it.
____________________
Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19445 |
| Status: |
Online
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Posted: Fri Mar 21st, 2008 22:22 |
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7am Saturday 22nd March
MP meds: no regular abx from July 1st 07 to 14th March 08
It has been an eventful time re meds. see note below.
currently mino 50mg to modulate bottom symptoms.
Benicar 40mg Q5 to 6Hish with half s/l prn
Other meds:
Insulin 15u/s BID. blood sugars stable.
occasional panadol helps with level of immunopathology.
Q changes with need. from occasional to TID. I use MP meds adjustments first always.
milk thistle BID
NP none.
Light exposure: tint, blinds and drapes over windows. no going out.
-cutting bottom pain - has been very sore. blood loss varies.
-hands and knees particularly sore.
-hair loss: continues. hair in a bad state. lalalala..
-eyes: blurry.
-ears re feeling wet itchy, sore, swollen. throat sore.<< this is lessening with mino at 50mg.
-Face and ears: pufft. still feels like a grainy facemask. cannot wash off or peel it off. looks waxy.
-nausea : milder but still present, escalates when needing to rest from short term exertion - computer, phone etc.
-esophageal: burns, relieved by meal.
-easily chokey. taking care.
-chokey cough: less mucus in throat.
-occasional headache: panadol
-Diaphragmic/Gall area: immunopathology. RUQ more swollen than L.
-chest pressure: occurs sometimes when reclining - I sit up till it relieves.
-Legs going to sleep when sitting on my computer chair: has stopped.
-R upper leg: numb area on it has a funny feel to it now.
-numb area on the L upper leg.
-lower legs and feet: layer of thick skin continually.
-Keep falling asleep when on recliner in front of television. Resting as required, yet also restless/uncomfortable/insomnia continues. Have to be on 3 pillows or in recliner to try to sleep.
-weakness, walking: I can feel that I am a little stronger (yesterday).
-walking short distance just to where I need to go inside house. too weak to stand in one place (can now stand approx 30 secs) still unable to get meals or dress self. Still not able to go out, *but am having some flights of fancy re what I might do eventually.
-showering myself, sitting down
-treadmill: none this week due to dealing with high level of immmunopathology
-hands weak and sore - painful to bump. it is the bones in the hands..
-2 little fingers L hand: numb/pins and needles continues. improving. difficult to close into fist.
-tops of hands: grainy feel.. perhaps sunspots being dealt with.
-Feet and lower legs: are pufft. feet feel tight and bulky. look waxy.
-skin on top of feet > less inflamed and sore.
-feet, toes, numb may be improving..
-toenails: continue to grow into/under the skin on each side. lift them out daily or second daily to reduce incidence of inflammation.
-*skin on seating area of backs of legs: the dark rough skin is decreasing in area
-Full body swollen continues. LLQ and RUQ noticably more.
-body/skin elasticity etc damaged by disease beyond repair
-muscles stiff and achy all over. debilitating.
-abdo muscles: immunopathology
-hot feeling quick electric jabs: esp LLQ, L leg and other.
-lingering whisper of nerve pain on back ribs.
-skin: graining etc. patches of dry.
-still itch all over. probably because skin is wrinkling as *puff slowly decreases.
-dizziness on lying down. taking care..
-occasionally I feel a bit down - the meds soon pick me up.
-Physically uncomfortable and miserable at times. managing.
assisting study site in the background since return from hospital.
Noting: home from hospital 14 weeks (was given 3 IV antibiotics together, and was in full light, no drapes, CT scans, xrays etc, ) is now 10 weeks since last steroid med.
*It has been tough. I am managing meds mainly around the standout symptoms, the cutting bottom pain and bleeding, to minimise both. (last Hb in January was lower than the accepted range)
I have been adjusting the meds as needed. my reactions to the meds have been changing.
I was surprised to see that it was only 9 weeks since the last steroid dose, and then realised that I was probably still coming out of all that, and the radiation of the hospital stay.
A few weeks ago, when I tried the mino 25mg Q6H for the sore finger, the immunopathology level increased.
The Benicar had been palliative, and then that effect began to change. I tried various schedules to none at all. When the Benicar isnt being helpful to me it is time to try adjusting the antibiotics.
I began taking the mino - 25mg Q6H at first and extending as able for about 6 days - with some relief to bottom but not all.
Thursday 20th, am: Started with Mino 50mg - needed at 10H and then extending as able (24H at present) - with growing relief of bottom symptoms and, some relief to painful swollen ears as well.
Thank You All, and best wishes.. AB
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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GeorgeinRollaMO
Member Advocate
| Joined: | Tue Aug 10th, 2004 |
| Location: | Rolla, Missouri USA |
| Posts: | 476 |
| Status: |
Offline
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Posted: Sat Mar 22nd, 2008 03:15 |
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Barb,
You are an amazing person!!!
I don't understand how you keep helping on the forum. But, maybe, it is what keeps you going.
Please know that everyone is wishing you wellness, and happiness!
And saying a prayer for you!
Dark Vader...aka, George
____________________
Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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Juanita
Member in Phase 2
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 257 |
| Status: |
Offline
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Posted: Sat Mar 22nd, 2008 17:00 |
|
Hurrah for Barb!!
____________________
MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
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Deb Grabetz
Member in Phase 2
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Posted: Sun Mar 23rd, 2008 11:29 |
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| BIG SMILES FOR YOU BARB....and lots of Easter HUGS! Deb
____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | West Coast, USA |
| Posts: | 584 |
| Status: |
Offline
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Posted: Sun Mar 23rd, 2008 13:55 |
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Yes, much love and joy as you are coming up and out on this resurrection morning!
____________________
Lyme Babs? Bart? | 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | cal/mag lysine hydroxyzine valium | rarely leave house NoIRs cover up low lux home | 25D15 Oct08
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19445 |
| Status: |
Online
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Posted: Fri Mar 28th, 2008 08:56 |
|
6pm Friday 28th March
MP meds: no sustained regular abx from July 1st 07
14th to 24th March 08 frequent mino to modulate bottom symptoms.
no antibiotics now
Benicar 40mg Q4 to 6Hish with half s/l prn
Other meds:
Insulin 15u/s BID. blood sugars stable.
panadol approx Q6H can help with level of immunopathology.
Q TID.
milk thistle BID
Light exposure: tint, blinds and drapes over windows. no going out.
-Full body heaviness and swollen continues. LLQ and RUQ noticably more. most uncomfortable - adds to insomnia.
-Body stiff and achy all over. debilitating.
-hands and knees particularly sore. is a huge effort to get up.
-ears painful, swollen. throat sore.
-Diaphragmic/Gall area: high level immunopathology. RUQ more swollen.
-chest pressure: occurs frequently when reclining - I sit up till it resolves.
-hair loss: continues. hair in a bad state. lalalala..
-eyes: blurry.
-Face and ears: still feels like a grainy facemask. cannot wash off or peel it off. looks waxy.
-nausea : milder but still present, escalates when needing to rest from short term exertion - computer, phone etc.
-esophageal: burns, relieved by meal.
-easily chokey. taking care.
-chokey cough: occasional
-R upper leg: numb area on it has a funny feel to it now.
-numb area on the L upper leg. (old injury)
-lower legs and feet: layer of thick skin continually.
-Keep falling asleep when on recliner in front of television. Resting as required, yet also restless/uncomfortable/insomnia continues. Have to be on 3 pillows or in recliner to try to sleep.
-weakness, walking: -walking short distance, inside. as much as I can manage: for exercise twice daily. can stand in one place a little while. still unable to get meals or dress self. Still too much effort/difficulty to go on outings.
-showering myself, sitting down - big effort.
-hands weak and sore - painful to bump. it is the bones in the hands..
-2 little fingers L hand: numb/pins and needles continues. difficult to close into fist.
-tops of hands: grainy feel.. perhaps sunspots being dealt with.
-Feet and lower legs: are pufft. feet feel tight and bulky. look waxy.
-skin on top of feet: sore.
-feet, toes: numb..
-big toe: occasional mild ache (high uric acid- gout)
-toenails: continue to grow into/under the skin on each side. lift them out daily or second daily to reduce incidence of inflammation.
-skin on seating area of backs of legs: the dark rough skin is decreasing in area
-body/skin elasticity etc very badly damaged by disease (see FAQ What causes swelling? for some advice I received from coolbeans. I will look into this when swelling subsides, and I have enough energy)
-abdo and back muscles: immunopathology
-hot feeling electric jabs: anywhere.
--skin: graining etc. patches of dry.
-still itch all over.
-dizziness on lying down. taking care..
chills: any time. either for no reason, or if emotional.
-Physically uncomfortable and miserable at times. managing.
*the cutting/burning bottom pain and blood loss stopped by using the mino 50mg Q12H. BUT the level of immunopathology otherwise, and the swelling, increased. Mino stopped and High level of immunopathology continues. using meds. It is one moment at a time.
Thank You All, and best wishes.. AB
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Karen50
Member
| Joined: | Fri Mar 28th, 2008 |
| Location: | |
| Posts: | 2 |
| Status: |
Offline
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Posted: Fri Mar 28th, 2008 12:58 |
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| Hi Karen, Thank you for your post. Your post has been moved to have your own thread for continuity - so you can have all your information there and you will be replied asap. Thank you. here is your link. Karen's first post
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animi7
Health Professional
| Joined: | Fri Nov 24th, 2006 |
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Posted: Sat Mar 29th, 2008 01:07 |
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| Thanks Barb for the update. I think of you often, thoughts and prayers with you for a full recovery. And to think I'M conplaining with MY situation, puts everything in perspective. Love and hugs, Linda
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IBS Reynauds Meniere's carpel tunnel carcinoid syndrome 125D37,25D15.2 MP 1/07, Tylenol #2 #3 Gravol dilaudid Ibuprofen Naprosyn Ativan, NoIR limited outings covered
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19445 |
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Posted: Tue Apr 1st, 2008 21:24 |
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6am Wednesday 2nd April
MP meds: no sustained regular abx from July 1st 07
14th to 24th March 08 frequent mino to modulate bottom symptoms.
no antibiotics
Benicar 40mg Q5 to 6Hish with half s/l prn thru night.
Other meds:
Insulin 15u/s BID. blood sugars higher but stable.
panadol: occasional can help with level of immunopathology.
Q TID to QID.
milk thistle BID
Light exposure: tint, blinds and drapes over windows. no going out.
I found that after stopping the mino the higher level immunopathology continued, and I was so distracted by it that I wasnt taking the palliative meds as well as I needed to, to settle. I no longer have access to an endless supply of benicar, so I made a conscious effort to take Quercetin 250mg TID, and found that I needed to take it QID, and also used panadol as needed, to tone the symptoms down.
Symptoms as per above post with these meds changes:
-ears painful, swollen, ooze - some relief with increased meds.
-insomnia: now able to sleep for 2H at a time.
-skin is crepey, itchy and dry, appearing to be from the letting go of some of the puff?
-walking: I have been walking up and back on the back path at dawn, and the front path after dusk. I notice there is some small improvement happening- both in my gait and the ability. puts after pressure on bottom. use meds. Edit: Friday 4th April: small blood loss again.
-range of motion: of arms and legs whilst on recliner. ability to do these movements has improved. this is also putting after pressure on bottom. have to be careful not to overdo these movements. >>
Wednesday 2nd April edit: I think today may be the beginning of turning the corner. not actually feeling better but I am now able to do the motion exercises while reclining.. still very stiff and achey and disabled re normal daily living, but surely it must help to be able to do these movements, and walk a little.
Have noticed that where my legs rest on the recliner: there is a distinct pressure dent, so we are getting some eggshell foam to use to lessen the pressure.
One moment at a time.
Thank You All, and best wishes.. AB
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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