Wrong Diagnosis - GET A SECOND OPINION

[C&C]

My husband, 66 years old, was diagnosed with low risk MDS after receiving platelets, blood and a bone marrow biopsy while in the hospital. Watched and waited for a while but was given vidaza and procrit eventually. He had 3 rounds of vidaza and kept feeling worse with extremely low blood pressure also. He finally went to MD Anderson in Houston for a second opinion and initially was given the same diagnosis but then the doctor noticed his B12 was <30 and did some more checking with other doctors.

His B12 had been <45 when he was first hospitalized and this was overlooked by the hospital and the Oncologist/Hematologist.

He stopped the vidaza and started injections of B12 and has been doing so much better since. He has tingling and numbness in his fingers resulting from this. His diagnosis now is Pernicious Anemia mimicking MDS. He has intrinsic factor blocking antibodies and will have to take B12 shots the rest of his life, but this is so much better than Vidaza.

I am posting this at the request of my husband because he wants everyone to realize how important a second opinion can be. Wish we had done this before the chemo. It would have saved so much sickness and damage to him.

[Neil Cuadra]

C&C,

Please thank your husband for sharing this cautionary tale. I hope that a misdiagnosis like this, with resulting treatments, is a rare occurrence, but it shows just how important getting a second opinions can be, right from the start.

[Marlene]

Hi C&C,

I'm so sorry they neglected to rule out the simple things first. Sometimes I think they assume the worse and forget to look for nutritional issues. Mis-diagnosis occurs more often than we are led to believe. Also, try to get all the copies of your labs. You'd be surprised at what you catch that they missed or dismissed as important. So glad you went for a second opinion and MD Anderson caught it.

MD Anderson may have also checked these but in case they haven't, it's worth pursuing with your internist/GP: B12, folate, iron, copper, zinc, and D3 are the main nutrients to check for bone marrow issues.

Vitamin D - This should be in the 50 -70 ranges. If not, consider supplementing with vitamin D3 and K2.

Folate - if serum folate is high without any supplementation, then you may not be able to utilize it from food. This is easily taken of with an oral, bio-available form of folate. (not folic acid)

Iron - It's good to have a baseline. It may be high from transfusion so you may have to take measures to reduce it.

Copper - Low copper can also mimic MDS.

Zinc - low zinc can impact WBC where high zinc can impair copper absorption.

H.pylori bacteria - Get screened for this. This is the bacteria that causes ulcers and can also mimic MDS symptoms. This can also cause the autoimmune response to Intrisic Factor. It damages the lining of stomach.

Wheat/gluten intolerance can impact the stomach also. I would get screen for Celiac disease too.

Some people have methylation issue and need to use the bio-available forms of B12 and folate. It is the MTHFR mutation. Initial screening would be to check homocysteine levels and MMA levels. If high, it's an indication of either a deficiency and/or a conversion issue. Cyno B12 and folic acid need to be converted to a usable form by the body and if you have the mutation, conversion is impaired.

Finally, even with intrinsic factor issues, you can still take an oral B12. Jarrow makes a bio-available B12 called Methyl B12. 1000 mcgs and 5000 mcgs. It is now understood that the large doses of this form of B12 is passively absorbed in the intestine. B12 is very safe at these doses. You would not absorb more than 10 mcg. It's a good way to supplement the shots especially if you get them monthly, you may find that towards the end of the month, the B12 is getting low.

There's a lot of info on this scattered throughout the site. You can do a search to find older threads.

Marlene

[Cheryl C]

What a mine of information you are Marlene! That was such an interesting post. Thanks.

[C&C]

Marlene,
Thank you for all the information. We will look closer at all the lab work for more information. Husband now taking a B12 shot every other week and also folic acid.

[Marlene]

You may want to look at using a bio-available form of the folic acid if you're not already doing so. It's usually called L-5 Methyltrtrahydrofolate. It won't be called folic acid. Thorne Research makes a Basic B Complex that has 400 mcg's. Or they have a stand alone folate too if you need higher doses. At some point, I think it's important to add in B complex to cover all the B vitamins once the individual deficiencies are corrected. They work better when all are present.

Jarrow, Thorne Research and Life Extension all make bio-available B vitamins. You can get them online at www.iherb.com