[lindajo]

When we met at the aamds convention in Baltimore all of the other patients I talked to mentioned this problem. My “brain fog” increases as my counts drop or if I have an infection. It seems to be better if my hematocrit is above 10.0.

It isn’t really anything to worry about but it is annoying.

[lindajo]

Try going to http://www.aplastic.org click on information then click on resources directory. It is the second or third thing on the list. I just brought it up, so I don’t know why you weren’t able to get it. Perhaps I didn’t type the full direct address correctly.

I looked again and it works this way, but you are right when I click on what I wrote above the page doesn’t come up. See if you can tell me what I typed wrong. I am not seeing it.

[lindajo]

Hi, I think what we call it here is refractory anemia with ringed sideroblasts(RARS).It is a type of MDS under the FAB(French American British Classification). It is also called that under the WHO(World Health Organization) . Usually these patients have the least side effects and a longer prognosis or life span.

I know of several women patients that had children that were born healthy and their pregnancy is how they found out that they had MDS.

I didn’t find out I had MDS until later, but now I think I had the disease long before I was diagnosed. I am not sure that you should let your Mom or any doctor decide whether you should have children or not. I definetly wouldn’t recommend it and I won’t get pregnant again, but I don’t think enough is known now for anyone to say you can’t.

It might be better for someone else to carry your child for you. Here we call it surgate motherhood. Your egg and your husbands sperm is fertilized and then implanted in a woman who is healthier and can carry the baby to term for you. Do they have that in your country?

You probably can’t pass the disease on to your child but that risk is still relatively unknown.

It is a matter of time before you get worse, but it could be years. There are many new promising treatments that could change everything before then. Also over the past 15 years I have had several times of extreme crisis but then I have returned to a manageable level.

You don’t say how old you are. I was 29 when I initially got sick, I got better after 1 1/2 years but every time I try to return to working I get worse. As long as I can rest when I need to I do o.k.

Try not to worry. Eat healthy and work on learning as much as you can.

[lindajo]

I was told that red wine might be beneficial in moderation, but you have to remember what medications you are on and if you can take alcohol with them.

I avoid beer because of frequent antibiotics. I don’t need the extra yeast that is in them. I get yeast infections easily so I also avoid cinammon rolls, syrup and anything else with sugar when I am on an antibiotic.

I think it depends on how much the doctor drinks himself whether he thinks it is a good idea. Remember you will get drunk on less, because you have less good blood to mix with the alcohol. It is easier to get a higher blood alcohol level.

[lindajo]

There is another site that is easy to read. It is http://www.aplastic.org/aplastic/information_hope/resources_directory/

Then click on understanding your complete blood count.

[lindajo]

Kristy, Don’t give up. She is a fighter evidently. We will pray for you. Lindajo

[lindajo]

I wish there was an easy answer to your question. It took me two years to qualify for social security, but I was 29 not 62.

I don’t know of anyone who was approved for social security the first time through. I would consult someone who fights the agency on a regular basis for an opinion. Many of them don’t get paid unless you get benefits. It may be that their commission will eat up that 400 difference.

The people at social security may be your best source for advice.
Even though that is a conflict of interest, in my opinion.

Do you have private disability insurance or a group benefit that you qualify for. I received my group benefit the first two years and then the disability company paid for an expert to fight for the benefits. My check from them was then reduced by the social security amount.

Good luck, I am sure this will be a difficult decision.

[lindajo]

Unfortunately the answer is yes. It generally isn’t considered to be terminal, but it causes the immune system to be impaired. Patients often die actually from another condition and MDS is listed as a contributing factor. Those conditions are often heart problems, pnemonia, flu,etc.

I am sure this isn’t what you wanted to hear but I feel it is easier to get the truth. Try and not worry about when he will die, that could be a long time, worry about making the time you have count.

[lindajo]

I have never had the problem of not getting blood from a vein, but the shakes, cold extremities and the involuntarry muscle reaction in the arm happens to me all the time. Normally just my right arm.

I have had this disease 15 years and I have not been able to predict when these symptoms will hit. It seemed like they were less severe and frequent when I was on nutritional supplements.

[lindajo]

Theresa, I am so deeply sorry for this change of events. I don’t think that transfusions can cause epilepsy. Is he getting something with the transfusions such as Lasik that he might be having a reaction to?

I am sure the doctors don’t even know yet, but be sure and ask for a consult with a good neurologist.

MDS is bad blood anyway you look at it. That alone in my opinion can affect any organ. Unfortunately for your Dad it was his brain or at least a section of it.

As bad as things look now, they can turn around for the better just as quickly. Keep your faith strong. Prayer…, lots of it, has been proven to give patients a more positive outcome. Put your dad on every prayer list you can find.

I had brain swelling and retrograde amnesia when I was first diagnosed. I turned around for the better in about a week, but it took some time to recover my life.

Be patient. It may look bleak right now but don’t give up. We will all pray for him. Linda

[lindajo]

I think as long as you have a local hematologist that admits when he doesn’t know everything and is willing to consult with your doctors at Fred Hutch you will be o.k.

I have also heard that Dr. Raza is fabulous. My doctors call her when they have a question, although I have never met her.

I am going to Cleveland Clinic the end of the month to consult with them. I met those doctors at the aamds convention two years ago. I liked both of them. Good luck with whatever you decide. Linda

I

[lindajo]

I have low body temperature most of the time too. When it is 99 I feel totally feverish. When it hits 100.4 I am incapacitated. I often have to call my daughter at 100 because I lose consciousness for a little while and have to sleep. We let it run around 100.4 for a couple of hours and then it generally breaks.

I have only had four or five times in 15 years when it didn’t and I had to call the doctor. If I went to the emergency room every time it spiked, I would be there every other week.

[lindajo]

Yes, they thought of that. The initial analysis showed it wasn’t. They will repeat when I get to Cleveland,

[lindajo]

Well, I found out that the doctor wants me to go somewhere else. Haven’t decided what to do yet. My iron overload is puzzling. I have only had 16-18 units over the past 15 years. The past five years I have only had two units of blood.

My nutritional supplements were reviewed by a nutritionist, three chiropractors, and a chemist, not to mention my hematologist and general practitioner. We didn’t think any of them were causing the problem but as a precaution I went off of them in January to see. Initially I had a slight drop but now it is climbing again.

I am only at a level of 562. Many MDS specialists don’t chelate until 1500 is what the aplastic anemia-mds foundation research person told me today. They stop chelating when the level gets to some say 1000 others prefer 700.

The only thing I take now is Darvocet for pain and occassionaly sudafed for allergies.

I may not get a benefit from the SQUID machine if they aren’t going to chelate. I may wait until I get to 1500 to go.

Right now I am going to try and get into Cleveland Clinic to
see Dr. Mikkael Sekeres. Maybe he will have an idea or I can check into getting into the clinical trial for EXJade.

[lindajo]

Thanks for the information.

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