Very worried about MDS. I am extremely anxious and feel very alone.

Please read the helpful suggestions in the just want to talk and anxiety/depression chats.
You might try the attached.

I have MDS.

A year ago I was in the same spot you are now. I'd say there was about a 3 month period between my first 'bad' blood counts and my diagnosis.

The waiting was very difficult and stressful. The diagnosis was also very difficult.

However, what I've found is that the best way to deal with anxiety is to take action. Take control of your situation. Pursue this aggressively with your doctors and seek second and third opinions from experts - esp Mayo Clinic!

Once you know what you are dealing with, you'll know how to fight it. You are young and that is hugely in your favor no matter what your fight looks like!

It's difficult for us to give any insight into the disease because they're are so many factors that come into play in terms of severity, prognosis, treatment plan, etc.

Once you have more information and are taking some control over your situation, you'll feel better and we will all be able to offer more insight.

Hi. I saw your post on FB too, and believe me, I know how you feel. I had a BMB by my local community hospital in 2017 - they told me I had MDS and to go to Dana Farber. I went there and they told me I didn't meet the criteria for MDS (yet), but I had very, very low platelets, so they were going to continue to watch me.

I continued to get my blood tested, and in 2022, I had genetic changes (tp53 - my understanding, the worst one there is) and was listed as CCUS, not yet MDS. This fall, I'm having genetic testing done (skin biopsy) and another BMB.

I guess my point is, don't rush it, things can move slowly, they may never happen. I'd be sure I had a doctor at a COE if it develops. I know it sounds silly saying "take a deep breath" - I sweated this for many, many months, close to a year, and went into therapy. The bottom line is I have this day - today - and I'm going to live it. I do feel my diagnosis will come, but I'll worry about that when it does. And trust me, I know it's not that easy. Every so often (usually at night), I break down and cry, but then I move on.

I'm doing this alone, thank god you have people to be there with you. And you're young, that's in your favor. I'm 70 and don't qualify for a transplant, so I don't have a ton of options. Interestingly, I live in a house with lead paint (not chipping as far as I know), but I think my blood work was "odd" prior to moving here. So maybe a friend to talk to, a therapist, a support group?

@gemmalouwho What does your Dr say?

God can help you have peace if you ask him in prayer
I was diagnosed with that in Jan then they changed diagnosis
MDs can take ten years to become more serious and a medication called Azacytozine can help 75% takers

I had MDS with A TP53 mutation. I agree with all that was said. None of us have the very same symptoms. I had finished with one cancer and chemo a year before and my blood numbers were low. Platelets for sure keep going down. The others were low too. I had been a platelet donor for 25 years. I was told i could wait. No treatment may give me 5 years. I also had Brca2. I chose a transplant at 63.

Hey Gemma.
Youthful is helpful so you have that on your side as well as family.

So, mine started last November-ish, feeling something was off and not being able to train for next Ultra that was going very well until, it didn't. Fatigue, femurs feel like ice and generally felt like crap.
Initial bloodwork showed below normal RBC, WBC, platelets, hemoglobin...not ideal. Things continued their downward slide including other counts now below normal, and they still have not done a bone marrow biopsy as my numbers are still 'too good'. Doc says my marrow is lazy and all signs point to MDS...really!?

Be proactive since our healthcare system is not. Have found additional sleep to be really helpful. Stress reduction - for me - using Reishi Mushrooms and Ashwasgndha in the mornings at work and 5-HTP in the evenings to be a perfect mixture. No more coffee; green tea.
Have also started grounding 3x per week while stretching / doing yoga on the grass barefoot. Making that connection with the Earth's frequency I think is also helping as last bloodwork showed the above have stabilized - still below normal - though iron dropped about 30 points...sigh. Freakin' 'lazy marrow'!

On Thursday I begin TCM (Traditional Chinese Medicine) that a 72 yr old fit as heck friend from Hong Kong who shared with his doc of over 40 years what I was experiencing. He said he has helped people with this condition in SanFran. Have to use the 4 pillars so found someone in my area to do this, being acupuncture, massage, meditation and herbs. This should, in his opinion and experience, help the body to remember how to make healthy blood which, in turn, may heal the condition. He said 3 visits and should begin to feel a difference.

Prayer, and prayer groups. For me there is an Ultra community with prayer warriors from around the globe who have been with me every step of the way so far, no pun intended, including one guy who dedicated his entire month of September to me in prayer. Workplace prayers and church, too.

Stress reduction a biggie IMO. Changing activities (have gone from running over an average 40 miles per week to about 5 miles, to very heavy weights to stress the bones, and cycling and paddling more as time permits). Trying to reduce stress at work is the tough one though the above is helpful.

Keep your chin up! Stay active and never, ever give in!