Recent DX of MDS

[tiara]

My 71 yr old fiance’ was recently dx’d by the VA in Little Rock with MDS. Considered low risk of developing leukemia and at this time no treatment was recommended. He is on a blood thinner so has regular blood testing. Which is how this was detected. His WBC, RBC and platelets were all low. All rose in the next 3 tests but bone biopsy was recommended and showed evidence of MDS.

He has had atypical fatigue, more bruising then usual but overall has been in good health for years. We are grateful to have found true love again late in life, have a healthy lifestyle, many activities we participate in–life is not a spectator sport! and want to find ways to cope with this challenge.

Right now, we are both recovering from a low grade ‘bug’ going around. Low fever, fatigue–worst symptom, low appetite, some nausea, some head and neck ache. Intermittent ups and downs. But some of these are symptoms I’ve read may be due to MDS. I’d like any information or personal accounts of what MDS symptoms you may have to help us determine when he experiences something due to MDS and when he may need to call for help.

What sorts of things make MDS worse? Any lifestyle factors that help or hinder?

Life has many challenges. A chronic illness is a hard burden. I have one but it is fairly low grade. The unpredictability of good or bad days is one of my greatest frustrations. Not being able to work on various projects due to lack of energy or keep commitments to others and feeling as if I am slowly slipping down in health makes me feel useless. But when I start to have a self-pity party, I look across the street at the home of a young couple with a far bigger burden. The husband was in a major accident several years ago and is now quadriplegic. They have perhaps decades ahead of them. I saw his slim, lovely wife wheel his chair down the ramp at dusk one evening. Took him to their van, gracefully pivoted the chair near the door, and in a poignant parody of a waltz, bent to wrap her arms around him, stood, turned, stepped forward to lower him to the seat, slid her arm under his legs and positioned him carefully. Then stood, packed the chair and drove off in the waning light. Life goes on. She has stuck with him. What courage they both have. What love. Their example makes us more grateful for the 6 and 7 decades we each have lived with many adventures and our rich life together. Our issues are far lighter burdens than theirs.

Positive waves to all. Dum Vivimus, Vivamus! While we live, let us truly Live!

[Anonymous]

Dear Tiara, Thank you for your post with information regarding your fiance’s health. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion. He should be very carefully assessed before undergoing any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your contact information to patientliaison@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.

[tiara]

Thank you for the reply and information.
Late last week we had some information come up that may need to have his dx re-evaluated. We both had a case of a relatively minor but lingering ‘bug’ going around the area. Started with a slight dry throat, perhaps low grade fever, neck/headache, some body aches, nausea, gut cramping, but most noticeable, a physical and mental fatigue. I checked with my PCP’s nurse and yes, that fit in with what many others were reporting. Usually lingering on and off for 7-14 days. I recovered after about 14 days but he was still having some GI symptoms and fatigue. Then took a turn for the worse. Extreme need for sleep–12 hours one night with a few times he got up for water and bathroom. Then took a long nap midday and slept another 10 hours. Started running a fever, sometimes hot and dry, sometimes with heavy sweating. Sometimes slightly chilled. Sore throat came back and was worse. One night had a temp of 103-104 and called the clinic the next day for an appt. He saw a new PCP, who checked his records, asked about symptoms and immediately asked if he had noticed a tick bite recently as a tick borne recurring fever would fit that description and we live in a high tick area and hike often. We haven’t noticed any ticks on ourselves or dogs for several months. We check each other for ticks and to our knowledge, no ticks were on us for more than 2 hours max. But I was treated for a TBD last year. I did have a bullseye rash but the tick was a lone star tick–not known to carry Lyme but does carry lonestari spirochete. Both the state health dept website and CDC claimed that even with a rash, most people don’t get sick and if they do, it is milder than Lyme. I did not have any significant ‘flu’ like symptoms in the next 2 weeks after the rash. I took the ‘experts’ word for it. And months later came down with a variety of ever changing but burdensome symptoms. Unpredictable fatigue and soreness, and not in proportion to any work or exercise I had been doing, fatigue, mood swings, brain fog, loss of appetite, sometimes feeling a bit warm or chilled in a room where the AC wasn’t changing temps that fast. Air hunger, not always when exercising–pulse ox meter showed pulse not that fast and O2 levels 98-99%, some heart palps, but no true exercise intolerance. Then I had an extreme bout of feeling chilled and spasmodic shivering. Teeth chattering, waves of shivering unlike anything I’ve ever had from being truly cold. Temp was slightly low for me, 97.5 no sweating. It took an hour in a hot bath and then under a heavy quilt to feel warm and stop shivering. The next day I called for an appt but before I got to my PCP, had to see a vet about one of my dogs. The vet asked if I wanted Lyme testing and vaccine. I said there isn’t supposed to be any in the area. He said it is there in dogs and other animals. I checked symptoms of Lyme and many of my symptoms fit stage 2. PCP started me on doxycycline and within 48 hours I was much improved. Titer testing showed inconclusive for Lyme, I did have some lowered platelets and slightly elevated WBC. But there is no test for lonestari and Lyme testing is being criticized for not showing regional strains and false negatives with people whose titer never turns over. Possibly due to immune system being too depleted. At any rate, the antibiotic worked for me.
But when this new PCP asked about ticks, my fiance’ was skeptical at first as he didn’t think any tick at all had been on him long enough to infect him. However many people who do get TBD’s don’t recall being bitten or seeing a tick at all.
His first blood test to come back with pancytopenia was perhaps 2 months ago. Probably a month or more since either of us had noticed a tick on ourselves or our dogs. But for some weeks before that blood test, he had been feeling atypical fatigue. PCP at that time thought might be due to low testosterone and recommended bioidentical topical testosterone. Helped some but his endurance on hikes was decreasing, sometimes feeling short of breath. And getting some small bruises. All symptoms common to pancytopenia but also to many TBD’s. He may have had a bit of a rash–not bullseye, that we thought were small insect bites. He did on this appt have something on his throat, cultured for strep and also checked for mono. Test results not back yet. Started on amoxicillin which helped throat and fever reduce but not gone. Will call clinic tomorrow. PCP said if tests negative or antibiotic not resolved fever, would do a TBD titer test. While waiting, I’ve been checking TBD’s for pancytopenia and other hematologic abnormalities. Yes, most TBD’s appear to have pancytopenia, thrombocytopenia or thrombocytopenia as fairly frequent symptoms/test results.
He had gotten a call from oncology about the pancytopenia and at the appt his test that day had WBC, RBC and platelets all go up enough to make leukemia less likely but the oncologist still recommended a bone biopsy. The day of the biopsy was checked again and all 3 rose again. Biopsy results indicated not leukemia, but dx was MDS, low risk of becoming leukemia. I found some information on biopsies done on TBD’s patients with pancytopenia but do not know if the information is similar to his results. Will forward to the PCP and oncology.
We hope that the original dx of MDS may have been in error, it seems ‘better’ to have an infectious illness with good chance of a few weeks of antibiotics bringing his blood tests back up in range than true MDS. Or perhaps he does have MDS but was still so low grade had not shown up out of range before until a TBD affect his blood. We hope to find out more on this ASAP.
We spoke to 2 friends today who have both had TBD’s. One had Rocky Mountain Spotted Fever, the other Ehrlichiosis. Symptoms quite similar as was treatment and response to doxy. This state is one of the 3 highest for TBD’s. And may be much higher as many human doctors are unaware of how many animals are infected. Veterinarians treat many animals in the state for TBD’s. Mostly dogs and some more valuable livestock. According to one site collecting info on veterinary lab testing, almost 4700 dogs in the state this year have tested positive, 1 out of 5, and in our county, 1 out of 3.
So it seems quite possible he has a TBD.
If he does test positive or is symptomatic enough to start treatment before test results come back, standard procedure as the tests can take at least a week and better response if treatment starts ASAP, and his blood test results continue to improve, it seems sensible to have his biopsy re-evaluated and probably get a second opinion.
We will read the information you have given me and forward it also. It might be wise to have anyone living in a high tick area with some known TBD’s who has blood results meriting a bone biopsy checked for a TBD first. At least asking about some symptoms, exposure, and if those indicate possible infection, titer testing. Ruling out an infection before a biopsy might reduce the need for that invasive procedure.
Thank you again. If his results would be of use to you, I will verify that he is willing to forward them to you.

[tiara]

My fiance’ does have Rocky Mountain Spotted Fever and been on doxycycline for a week. No results yet for other TBD’s but one or more co-infections quite possible. His last blood draw did again show however that his WBC and platelets had both risen slightly again. RBC was still somewhat low.

Until he recovers from the RMSF and has more blood work done, there is not enough information to determine if one or more TBD’s may be the root cause of his pancytopenia and was misdiagnosed for MDS. If anything may be useful to others here I’ll post it but due to the frustrating spammers I am otherwise out of here.

[Author]

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