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Pipistrelle
Member
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Posted: Mon Nov 24th, 2008 00:25 |
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Thanks Claire. Didn't see your post till I had sent mine. I'll certainly think about taking someone to the meeting with me.
Morag
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp work
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Deb Grabetz
Support Team
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Posted: Mon Nov 24th, 2008 01:15 |
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Good point Morag about the *sunglasses* being cosmetic vs the need for NoIR's. I'll check our FA contract to see what the particular wording is. Although, I would be in a situation such as yours when dealing directly with people where there would be a need to remove for eye contact. Yet being able to wear in the terminals which are always so bright, would be better than not at all!
Hope all goes well for you.
____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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cwylie1
Member
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Posted: Mon Nov 24th, 2008 03:31 |
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Hello All,
Deb and Morag, I've been in similar difficulties w/ work. I am wearing my Noirs at work w/o complaint from management now, however they did refer to my wearing them as an "accomodation" and that my manager was 'letting' me wear them as such. I bristled a bit at that but let it go as I am glad to be able to wear them w/o controversy.
I do remove them briefly when I speak w/people at least initially, sometimes apologizing when I need to put them back on. People are usually gracious and accept them w/o a fuss. I was pursuing formal request for medical accomodations when I discovered the need to wear the spectrashields which block the overhead and side light. I've been 98% to the good since then. I purchased the 01 and the 07 Noirs, affixed reading peepers in them and can wear either pair at work depending on the degree of brightness.
My worse time is with both the fluros and the bright sunny days. If it's overcast (and it is fall/winter cloudy time now in Illinois) I don't seem to have nearly the problem w/ the floros and can go w/o my Noirs a bit at work. Especially if my back is to the light and I don't have any light directly overhead. This is my current desk area situation so that's a good thing!!!
Have you been given a reason why you can't wear the NOIRs other than they think them to be simply 'sunglasses'. If someone were recovering from eye surgery and needed to wear them would your management give issue w/that? Good luck w/it.
Carol 
Last edited on Mon Nov 24th, 2008 03:33 by cwylie1
____________________
Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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Kas
Member
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Posted: Fri Nov 28th, 2008 17:48 |
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This morning, I had an appointment at the liver clinic at a large Toronto teaching hospital.
I was last there almost 2 years back and, for various reasons, had had to cancel two previous follow- up appointments, The only reason I go there, is because my MP doc ( also my family doc), feels I should keep ' an eye' on things and they have the most updated tests and scanning equipment etc. To keep her happy, I do what I have to, and as it is difficult to get into such places, she feels it is good to have a record there.
When I first went to this clinic, I was told that the mino would cause terrible liver damage. The MP was pooh- paahed as an experimental treatment with no track record ( their thinking) and side- effects I could not even know about. I was labelled a problem patient, especially after I refused a liver biopsy and did not agree with them that the pattern of my raised liver enzymes " did not follow the typical sarc pattern". " What pattern?", I asked, " Sarc is a systemic disease and it can be different in everyone". Anyhoo, I had the 11 tubes of bloods done ( quite a few results were obviously in the abnormal range) and the fibrotest and the liver scan were normal. I was sent away and told to monitor the enzymes and come back a year later. A promised call to Dr M, of course never materialised, as expected. He said if sarc is not worrying you, to perhaps let it be. ( Yeah, so it can slowly get worse and kill me off?!!)
Fast forward almost 21 months. Today, I saw a young fellow from Hamilton, Ontario. Nice man. He could not believe how well informed I was about my disease. I could not believe how much I had to tell him about sarc! It went something like this:
" You could have an autoimmue hepatitis. Your pattern of raised liver enzymes is not typical of sarcoidosis and it isn't usual in the liver (!!). Perhaps you have some component of autoimmune hepatitis. Your ANA was slightly raised: ( me' Big deal, it goes up and down and always has- last test at my doc's was normal)
Me: Not typical in the liver - are you kidding? At least 75 % of sarc patients have liver involvement. I had it in my now deceased spleen, I have biopsy proof of it in my stomach, I clearly have it in my kidneys and lung and lymph nodes etc, so why in the world would it not be in my liver, where I believe it may have started. I therefore refuse to have any further invasive tests to prove what I already know and am treating.
Dr. I suppose so. It's just that we don't know very much about sarc and its causes. ( We are sent to doctors who know very little about our diseases???)
Me : Well, I do, thanks to Dr M,and perhaps you should read up on the MP to learn more about the pathogenesis of the disease. It can't do any harm.You could always call him and chat to him, too ( I have to try...)
( At that point, he asked me to tell him a bit about the MP. I gave him my well -versed summary of it, asked him to write down the website and read more up when he had the time. He said it was ' interesting' and he would, but who knows?). He told me I was clearly very 'informed' about sarc, and that he would speak to the specialist about me. He then asked if I was feeling well, and I said I felt wonderul! ( No need to bombard him with tales of IP, when he did not know what that was, anyway, and imagine if I had told him how low my D levels are??).
Next the Head Honcho(HH) liver guy walks in with the fellow.
HH: You do know that mino can cause terrible liver damage?
Me: I take it in low, pulsed doses only. The benicar will protect my organs. ( I can see that he is thinking I am a total nut case now!)
HH: No matter, you have been on it for a long time, and even low doses long - term means you are going to run into bad liver problems. As long as you know the side - effects and the fact that you could be doing serious harm to yourself. ( Me: Put me on steroids, and think of the harm you will be doing to me!)
Me: I accept fuill responsibility for my treatment of choice, but let me ask you why my liver enzymes are now lower than pre MP, and why when they do go up, they often come right down ( to mildy/moderately raised levels) often on higher doses of the abx? ( No response here)
HH: I am sending you down the the lab for a slew of tests you don't get in regular labs. You don't want a biopsy, so I think an ultrasound will be in order. Have it done in March and come back for a follow -up thereafter to see how things are looking.
And then he vanished, chart in hand to see the next patient.
So, I bid the nice young fellow farewell. He shook my hand and told me he had learned a lot from a patient today. I told him to remember me when the MP becomes the gold standard for sarc etc. He smiled broadly and said he would.
Down to the lab to give 7 vials of my red stuff, appointment for ultrasound and follow- up set for March 20 next year. No talk further talk of steroids or biopsises - at least for now, and I am left in peace to carry on my slow but steady MP journey.
My prayer? Please, let me prove the HH very, very wrong. Let my blood work not be too bad, let there be no fibrosis and let the u/s be normal, as it was back in 2007, but mostly let me carry on with the MP, at my own rate, to eventual good health again.
Last edited on Fri Nov 28th, 2008 17:54 by Kas
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Fri Nov 28th, 2008 19:18 |
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| Kas, I hope you get your prayer answered and help change the minds of the doctors you have seen as well. Claire
____________________
42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Kas
Member
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Posted: Fri Nov 28th, 2008 19:32 |
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Thank you so much, Claire.
If my prayer is indeed answered, watch this space in March next year!
If felt so empowered today- it was an incredible feeling! If only I knew back in 2003 when the Cleveland Clinic yanked my spleen out, telling me it could never be sarc! I have come such a long way since then, and all thanks to the MP...
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Deb Grabetz
Support Team
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Posted: Sat Nov 29th, 2008 12:16 |
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Kas,
Reading your visit with the Doc, made me think of how typical sounding this must be for sarc patients all over the world. I've been through much of the same thing, as I bet have so many. I hope your prayer is answered also but have a good idea that it will be!
I just silently laughed at my eye doc a couple months ago, who said my visual field test that was done many moons ago must have "had a shadow" on the original as my latest visual field was about 30% improved. Visually, I feel like I see 50% better out of this eye since the MP and this vision has been gone for 18 years! I just smile!
My doctor recently released me to go back to work and my goal is to do so part-time and then slowly move back to my full time schedule! He told me he has been amazed with my progress and that I'm his first sarc patient to return to work. Yet, Cleveland Clinic wanted to put me on methotrexate and "see how it goes." See how it goes...??? Little did they know, I'm not that kind of a gal.
My appointment with CC was quite disappointing, knowing that they are the leaders in sarc research and yet "pooh-pooh" the MP. I hope they wise up for the hundreds of thousands of people who could be getting their lives back. It's a crazy world we live in-- My daughter said to me just yesterday (she is a nurse), "Mom, as soon as you find the time I want you to sit down and write a five page letter (not sure where the 5 came from!) and send it to Cleveland Clinic and to every other doctor you've seen in the last 18 years. She told me you just can't let what you've just experienced go unnoticed and she is right. I plan to cc: every CEO and department lead at CC, along with every other doc I can think of...even the ones I haven't seen! It is my spring project!
Thanks Kas for sharing your story as I think it mirrors what we all have had to deal with. Lucky for us, we know the answers. My prayer, is that others who may not have the knowledge at hand to experience what we have, will be offered the MP soon by a doctor who is wise enough to see what real results look like with a "can-do" attitude...and not a "let's wait and see" attitude!
Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Pipistrelle
Member
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Posted: Sat Nov 29th, 2008 15:59 |
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Well done Kas on keeping your cool in the clinic especially with the HH! Thanks Carol for your very kind post, and to DEb, Claire and everyone else. The understanding and support on these boards is so heart-warming.
Well, the occupational health meeting on Thursday - I won't bore you with all the details but let's say I had to let some impertinent and inaccurate statements go and was also spoken to at times in a patronising way - but I had decided in advance to stay calm at all costs and to use the broken record technique - just repeating that all I needed was vertical blinds in a clinic room with permission to keep the overhead lights off - pointed out clinic rooms face the sunny side of the building. Must have repeated this about 10 times in 40 minutes!
in the end the agreement is that I can have vertical blinds in one clinic room, with the fluorescents off - this after I had pointed out that some rooms in the hospital have both vertical and pull-down blinds on the same windows, and surely Health & Safety must have approved them. Also, the room we met in had vertical blinds closed and ceiling lights off, so I asked if everyone was comfortable with that? (yes) Did it represent a hazard in any way? (no).
I then offered the use of my light meter so the H & S department could establish what level of light would be acceptable, and pointed out that no-one had considered measuring and agreeing safe light levels before suspending me.
In the end the occ health doctor agreed with me that I was not asking for anything out of the ordinary, and also agreed the fact that I have sole occupancy of my office means I can have the light level at my own preferred setting. This had been disputed by the departmental manager.
The doctor said it would help if I didnt wear my black coat. I stood up, took it off and said that it was an outdoor coat and that I would not be wearing it in clinic settings! I was wearing a suit, so I remained standing whilst I said that this was my regular work attire and that no patient had ever adversely commented on my apprearance in eight years. Then I sat down again! I've seen hundreds of patients over the years, with not one complaint against my work for any reason.
I said that the only difference to my apprearance will be the dark glasses, and that I always greet patients without the glasses, say I have sore eyes and then ask if they mind me wearing the glasses (and so far they never have).
One of the other managers said she felt it would be better if I wore a white coat!! In the clinic! I carefully explained that the white coat is seen as a barrier by patients.... which is why most doctors have stopped wearing them - and I am there as a lay expert, to support people, I am not a doctor.... anyway, I had the biggest belly laugh I have had for years, when I was finally on my own and reflected on what she had said! How out of touch some of these managers are.
The parting shot from these people is that what I am doing is on the borderline of acceptability to them, and if there is as much as one complaint then I will not be allowed to work there. This to someone who (according to my friends) doesn't look well, certainly doesn't feel well and nevertheless is doing their utmost to do their job well.... certainly made me feel valued and appreciated....
I need hardly say that when I am completely better, much as I love my job (for the difference it can make to patients), I will be thinking about moving on. In the meantine I'll continue to do my best for my patients.
Sorry this has turned into a candidate for Odette's Grump Stump! Rant now over!!
Morag
Last edited on Sat Nov 29th, 2008 16:04 by Pipistrelle
____________________
Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp work
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Michele MBK
Member
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 69 |
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Posted: Sat Nov 29th, 2008 17:50 |
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Morag, I find it very ironic that it is a medical work place dishing out the most grief to an employee regarding a medical need. Very very wrong. I am so sorry you have had to put up with this bs. And I am so impressed by your calm tenacity to stick up for your rights! Good for you!
I work in an academic environment. My employer is extremely supportive and actually pretty excited about how I came to decide upon such an alternative treatment in the face of the "medical establishment norm." Sometimes even my colleagues will surprise me. Last week I worked very long days at a convention (that I was unable to attend the prior year due to this illness) and I over-heard one colleague ask another how I'm doing...with genuine care. It's nice to have people looking out for one another.
Deb, I'm glad you are doing so much better and have found a way to start back to work. I've been wondering what conclusion you were able to arrive at since I know you had a huge decision to make! Hopefully, you will find with all the progress MP has given you, that working is actually easier now than when you had to stop.
Kas, thanks for sharing your experience with your docs. I loved your re-naming of the docs! I've had the same kind of experience with a more empathetic doc in training and a cynical HH-type.
Michele
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Lyme / RA 125D30 25D16 Advil / Vicodin or Celebrex low lux home NoIRS cover up Ph1May08 Ph2Sept08 May 09D25:6
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Deb Grabetz
Support Team
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Posted: Sat Nov 29th, 2008 22:16 |
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Morag...Wonderful news! You must have presented yourself in a most professional manner in order to succeed in getting what it sounds like was some resolution! Way to go!
Michele, thank you. It was a decision that has been looming for months as I knew at some point my contract was up...thankfully, I was at a point that I felt I could give it a try...and go from there! I so appreciate the kind words!
Plus, my doc wrote me quite the diplomatic note to request my NoIR's in class...something like this. "We would appreciate it if Deb could wear sunglasses during class as she is still somewhat sensitive to light"...!!!
Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Pipistrelle
Member
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Posted: Sat Nov 29th, 2008 23:22 |
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Thanks Deb,
Exciting news for you too, and I look forward to hearing how you get on with return to work plans.
I've spent the evening assembling references for the occ health doc who told me it was conjecture that people with sarc should limit their exposure to sunlight! So he's getting references from Scadding onwards.....
Morag
____________________
Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp work
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Sun Nov 30th, 2008 02:52 |
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Morag,
Even if it were only conjecture, I should think that with your doctor's support you ought to be able to try anything to improve your health without other people, doctors included, editorializing. I'm glad, however, that you have plenty of references to education him with.
Claire
____________________
42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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cwylie1
Member
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Posted: Sun Mar 15th, 2009 19:31 |
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Hello everyone!
Kaz. It's March! How are you doing with the MRI???
Morag, are things still going well at work? I am putzing along the same, staying away from bright rooms(difficult) and staying in the shadows.  My patients' rooms are for the most part, quite dark so I do their therapy there and not in the common, public areas which are quite bright. Your story is just incredible in relation to the ignorance and apparent fear of the managers with whom you need to work. Incredible!!!
How is everyone else doing? I think the time change and increased sunlight is going to be causing me more trouble at work again.
Here's to our health!!
Carol
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Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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Pipistrelle
Member
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Posted: Sun Mar 15th, 2009 23:42 |
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Hello, Carol, how nice to hear from you!
Work continues to be a challenge, but it is only 3 days, Monday - Wednesday, and most if not all the extra light exposure (meetings, clinics, seminars and home visits) happens on a Wednesday, so that gives me 4 days at home in reduced light to recover. I dose my longer lasting abx every other Wed evening now - seems to suit me best. I have a recovery strategy of doing absolutely nothing on Thursdays and Fridays, and generally feel well enough by Sunday to tackle some housework and get ready for the next 3 working days.
I'm now expected to travel to our head office once or twice a month (an hour each way by train), but I'm on annual leave the next time it is due (in April) - what a coincidence! The blackout blind is up in my office, but lets light in at the sides, quite a lot when it is sunny, so I'm taking in cardboard and tank tape to fix an overlap at the sides of the window and make it a bit darker. The clinic room I see patients in has vertical blinds, and I make sure I am never in there for more than an hour at a time.
There is another meeting with the occ health doc in May. I don't anticipate any problems - no-one has complained about my appearance and in fact patients have been very understanding when I say I have sore eyes (easy explanation) and need to wear dark glasses for a while.
Like you I am not looking forward to the increase in light intensity, and will be wrapped up more about the face when outside - have decided to apologise in advance for being 'Florence of Arabia' when meeting new people, with a brief explanation that I'm light sensitive! particularly on home visits - I'm sure they will be fine with it!
Morag
____________________
Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp work
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Deb Grabetz
Support Team
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Posted: Sat Mar 21st, 2009 12:25 |
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Morag,
Wow, I love your "CAN DO" attitude!
____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Kas
Member
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Posted: Sun Mar 22nd, 2009 18:36 |
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My liver scan was postponed until Tuesday, but I have been off the abx since mid Dec, as my kidney function was declining and causing doc tremendous stress. On the advice of a renal specialist friend, she agreed to keep me on Beni only until the kidney levels had improved. It took a while, but the last creatinine clearance test done about three weeks back, came back in the low normal level, finally, proving to doc that the ' damage' is reversible. Ironically, my liver enzymes were the highest they have been in a long time OFF all abx ( so much for the liver specialist telling me that mino would damage my liver !). My white cell count was a bit low ( 3.7). my red cell count also a bit low( as usual, due to the anemia of chronic disease, I guess), but nothing was more or less than usual, but the kidneys were improved!! I postponed my lung CT ( last one done in May 2007) until May 27, when hopefully I am more establised my abx and killing off bugs. My respirologist still refuses to accept the MP and talks about my going on to steroid puffers if things look worse. I am optomistic that they will look better!!
So, I will have my liver scan on Tuesday morning, and re- start on 25mg of mino that night and ever so slowly, so as not to cause any worrisome kidney IP. I will continue( hopefully) on my MP journey again. I am now 120 lbs, about 15 pounds lighter than when I started the MP, I wear a size 6 ( was a 10) and have had the easiest menopause imaginable. I will be 54 in May and am just about there with no hot flashes etc. I continue to avoid all D foods fastidiously and am very careful with minimizing my outdoor time in the light and sun, but find that using Kabana cream ( often two layers) a wide brimmed hat and my Noirs, sees me having no reactions. However, my sun exposure is still very limited and my drive to work is only 15 mins each way. I continue to wear my lighter Noirs in the brightly lit classrooms, but can sometimes go without them briefly, which allows my students to see some expression in my eyes!! They are all so used to me with glasses, that they will quickly remind me to put them on if I have not!!
Staying on the Beni four times a day allowed me to go on a week's vacation, proved to me that I can tolerate a lot more indoor light without Noirs, that many of my sarc aches and pains initially returned and then subsided, but not altogether, that my BP is still very low mostly, even in the absence of the abx, meaning that it is the disease and not even IP causing the numbers to go as low as 60/38 sometimes and then go up to 90/60 on rare occasions!! I have total faith that beni has been protecting my organs during this hiatus and will continue to do so as I progress.
Will keep you in the loop about the liver scan and repeat visit to the HH next week.......
Best to everyone on the MP,
Kas.
____________________
Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
| Status: |
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Posted: Mon Mar 23rd, 2009 01:51 |
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Congrats Kas in proving to your doc that the kidney labs are reversible. I had a slight decline in the kidney labs (in a positive direction) going back on one abx alone and then when I reached a level where that abx was really kicking butt, the kidney labs went up again (in a negative direction). So doc and I know to keep going slow. The kidneys will eventually clear.
Claire
____________________
42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Kas
Member
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Posted: Tue Mar 24th, 2009 21:02 |
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I had my liver scan today, and it appears that they could see nothing abnormal, however the fibrotest I had back in November did show stage 2 scarring, whereas it had not shown anything a year previously. I don't know how accurate this test is for sarc, but I am hoping that this will clear on the MP. I was also a bit concerned that I would get fibrosis on the MP drugs, when I felt they were preventing it.(??)
I have been removed from the HH's care. From now on, I will be under the care of a doc with an interest in granulatomous liver disease. The two young fellows I saw were very interested in the MP, respected my decision to carry on with it and not, at this point. consider a liver biopsy. I mentioned that my last liver tests were worse off the abx than on them, and they sent me for bloodwork to see where I am at before I take my first 25mg of mino again tonight. They agreed that I only need see them in about a year's time. The whole visit was far less stressful than with HH. Of course, my weight loss was mentioned, but I explained that I have had a lot of stress this past year and I have changed my eating to include 6 meals daily, with low carbs and sugars. I am now down to 121 pounds, which is still in the good BMI for my 5'2" frame. At my first visit to the liver clinic in 2006, I was apparently 142 lbs. When you need to lose weight, doctors are quick to tell you so, when you do, they want to know if you are alright! Go figure!
The one young fellow thanked me for teaching him about the MP and said he learned something today. I signed on to be part of an ongoing research study for liver diseases at the hospital. I hope by doing so, I can get the MP on their map.
So, tonight, is start- up night, finally. My plan is to stay on 25mg mino for about two weeks and then add a tiny bit of zith and see how the kidneys are baring up. I am so happy to be on my bike again and, I hope, on my slow journey to recovery.
____________________
Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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JohnMcC
registered
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Posted: Tue Mar 24th, 2009 23:23 |
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Hi Kas,
Looks like you may have struck some gold with your new "friends". Nothing more refreshing than an open mind.
Congrats on the new step forward.
Regards
John
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Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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Kas
Member
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Posted: Tue Mar 24th, 2009 23:33 |
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Thanks, John. I sure hope so. At least I appear to be off the TWH clinic hook until April next year, when, hopefully my progress on the MP will yield some positive improvements in the liver and other sarc- infected organs.
____________________
Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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