[lindajo]

Heh, are you making any progress on the itching??

I have been thinking of you. Lindajo

[lindajo]

Dear hmblume, I am a patient that like you hasn’t had any of the medications for RA. Unfortunately I have had my classification changed from erythremic myelosis to MDS unclassified to RCMD(refractrory cytopenia with multilineage dysplasia). Although I had numerous transfusions in the early years I haven’t had one since 1999. I can relate with feeling out of place.

One thing I found out at convention last year is that the any patient can move from one classification to another. It all depends on what the bone marrow looks like at the moment. For example a 5q- syndrome patient imight have a name change if Revlimid cures the chromosonal abnormality. They might have to find a whole new category for those patients.

I don’t think the doctor meant dwindling importance but that as they get more and more sophistticated tests that classifications change. Under the French American British (FAB classification there isn’t a place for me) Under the World Health Organization (WHO) classification there is. They went from 5 classes to 8.

It makes it very confusing for all patients. Keep up on all the RA material. You never know when they will change the classification system or apply a new drug trial from one type to all types. Good Luck and remember we are all bone marrow failure patients. You aren’t alone, ever. Lindajo

[lindajo]

Dave I am glad you feel well enough to post. I will pray that your transplant goes easy and your recovery is fast.

You are a brave pioneer. Even though BMT’s aren’t new,there aren’t very many MDS patients that have gone through them. The doctors will learn new things from your transplant that will help others. Thank you for taking the risk for all of us.

I will pray for your fast recovery. Lindajo

[lindajo]

I agree with Jimbob that naturapathic might be the way to go. A nutritionist is also a good idea. Before you go keep track of everything that your MIL eats. Have her right it down. It is possible that something that she is eating is causing a reaction. Avoid refined sugars and processed foods. Chemical preservatives are hard on anyone’s system but can be especially so for MDS patients.

If she was able to tolerate all foods before she might not be able to now that MDS is messing with her immune system.

[lindajo]

For itching you might try caladryl lotion, or oatmeal in your lukewarm bath. I had a rash on my arm for eight years and what finally cleared it up was vitamin supplements to improve my overall skin condition and then I applied hydrogen peroxide directly to the skin and covered the rash or itching areas with petroleum jelly.

I tried a number of different prescription creams from my dermatologist but that is what finally worked.

[lindajo]

Dear Di, I am having trouble with the website reply button tonight. I am so sorry that you are getting three confusing messages from me tonight.

It is hard to know when you should be there during the transplant. Just follow your instints. Your intuition is the best guide. The staff at the transplant centers will keep you up to date and help you make those decisions if you just ask. I will pray for every member of your family. Take care of yourself so that you don’t get run down Scott will need you healthy and rested when he gets home too. Lindajo

[lindajo]

I tried to respond to this topic and it went somewhere else. I’ll try again.

My red cells, whitecells, hemoglobin,hematocrit, Mean Cell Volume(MCV), MCH and Mean Platelet Volume(MPV) are all always outside the normal limits. My platelets are the only thing that stays in the normal range. Rght now my ferritin level is also high in the 400-600 range. We don’t know why and are still trying to figure that one out. My last transfusion was in 1999 and I don’t eat anything with a significant source of iron.

It is confusing to me to read others counts because men and women have slightly different normal values. I have also noticed that different labs have different ranges of what they consider normal.

[lindajo]

sorry I posted the wrong reply to the wrong topic. w

[lindajo]

My white cells, red cells, hematocrit,hemoglobin, mean cell volume(MCV), MCH and Mean Platelet Volume(MCV) are all always out of the normal range. Now my ferritin level is high in the 400-600 range. Since it was o.k. when I had my last transfusion in 1999 we are unsure why it has jumped. We are still keeping an eye on that to see what happens next.

They vary greatly from month to month. My platelet count is the only thing that generally stays in the normal range. My white cells are almost always around 2.5-2.8. When they get into the normal range of 4.4-11.3 (for women) then it is generally because I am fighting an infection.

When reading others counts I have to remind myself that men and women have slightly different normal ranges. I have also noticed that different labs put the ranges at different values. They wonder why we patients and families have such a hard time keeping up.

[lindajo]

I was looking at some criteria for clinical studies and one of them defined transfusion dependent as not being able to maintain a hematocrit of >25 without being transfused. I think the definition changes from time to time and what we think of as being dependent isn’t the same as how doctors and researchers define it.

[lindajo]

My spleen was enlarged initially to 1 1/2 normal size. After around 3 months and two to three transfusions it reduced in size to normal and I haven’t had trouble with enlargement since the initial crisis 14 years ago.

I think it greatly depends on why it is enlarged, which type MDS you have and how long you have had it.

I have talked to many MDS patients that have had theirs removed and improved afterward. Follow your instincts get a couple of opinions before you make any decision. Good Luck

[lindajo]

I had six units of blood my first two days. I didn’t get to 12 units until the end of the first year. I was as close to dead as I want to every get until it is time to go. Making a comeback from where I was is not something I want to try to do again.

[lindajo]

I think transfusions would help, but would throw me into chelation therapy. Right now I hover at 9.2 – 10.2 on hmg so they won’t give me a transfusion even if I wanted one.

I wonder how the doctors decide that a certain level is when it is necessary.

[lindajo]

Dear Andrew, I know how frigntening it can be when surgery comes up. My feeling is that if a doctor is willing to do it it must be necessary.

I had surgery to have septum removed last fall. I was better instantly because the septum was blocking my airway when I slept and my sleeping improved immediately. It enabled me to have more energy to fight MDS. I think I should have had the surgery years ago, but couldn’t find a doctor willing to take the risk. It also eliminated sinus infections that wouldn’t go away.

I had another friend who had her gall-bladder removed and surgery for carpal tunnel and she saw an improvement in MDS symptoms during the recovery process also. She was 5q- and in a trial for Revlimid at the time.

I will pray that your Mother has good results too. Lindajo

[lindajo]

I did so many things it is hard to know what worked. The first 1 to 2 years I needed transfusions infrequently. They thought that my need would increase but instead it decreased. Initially my disability was approved because an infection caused brain swelling and I had to learn to read and write all over again. I still get brain fog from time to time and I am unable to read, write or carry on a conversation at times when my blood counts drop. I also get a drop in blood pressure that makes me unable to be mobile. It is not unusual for my blood pressure to be 80/50.

I gradually changed my diet eliminating processed foods, fried foods etc. I eat mostly fresh foods, broiled baked or steamed. Meat, chicken and fish only once a day alternating the type. I quit eating almost all dairy foods and switched to soy products. I don’t think I am lactose intolerant but that dairy is just harder to digest.

In 1999 I decided I had nothing to lose so I started taking vitamin supplements that my chiropractor recommended and I started feeling better. The dosages are really high. I haven’t needed a transfusion since then. We added one supplement at a time to see if I had negative reactions to any of them. We used my monthly CBC as a guide. I was doing o.k. with that until last summer when my gall bladder flared up and my ferritin level jumped to 560.

We don’t know what is causing the iron overload. Especially since I am not currently having transfusions.

I stopped all supplements and it went down to 367. One of them or a combination of them may be contributing to the high iron count. It is possible that my body just needs a lower dose of what I was using. We are going to wait until September to do another ferritin level to see whether I am going up or down with that before we start any supplements again.

I had a number of antibiotics that were required over the years because of sinus infections that would not clear up. It seemed like I was on one antibiotic or another for a year and a half before my need for transfusions decreased, Last fall I had surgery to have my septum removed and the infections cleared up, so I was able to stop the antibiotics.

Fibromyalgia was added to my diagnosis in 1999. Some of my symptoms are from that and not MDS. Although I really can’t tell which ones.

I understand from others at the AA-MDS convention last year that their are other patients that are diagnosed MDS but don’t require transfusions. Most of them are only able to work part-time due to overwhelming fatigue. They also had a problem with muscle weakness and extreme fatigue.

Every time I try to increase my activity level to have a shot at returning to work, my blood counts drop like a rock. As long as I am careful with my activity level and watch where my counts are I seem to be able to keep them from falling.

I am certain there is a way I can get back to gainful employment, I just haven’t found it yet. It may be that I can do some type of work from home. I know right now I can’t put in enough hours to work full-time I might only be able to do an hour a day but I keep hoping that my body will gradually adjust.

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