Do you ever feel normal with MDS

[jmajjb]

I have a slight dizziness and tingling in my tongue ever since diagnosed with MDS, sometimes a will go a few days without but always comes back. My hemoglobin was 11.5, HCT 32.5, RBC 2.99 at last check. Are these low enough to cause dizziness? My naturopath thinks it could be anxiety. I just wonder does anyone ever feel normal with MDS? What daily symptoms do you experience? My hematologist says I am mild and should be living normally at this point- but I always have this strange feeling. The dizziness can be explained as light headed or slightly blurry feeling. Thank you!

[riccd2001]

I call it "Brain Fog" and it's something affecting "normal" that comes and goes related directly to Hgb level.

[bailie]

Everyone is different. I am in my seventh round of Vidaza and have felt "normal" the whole time and golfing once a week. I think it makes a big difference when a person gets diagnosed and if they can keep "ahead of the game" if that is possible. Also, MDS comes in all flavors so a standard answer doesn't seem to work. I have felt momentary light headed during the Vidaza shots, but nothing much and it lasts just a couple of seconds.

[maggiemag]

To the OP; based just on your numbers, I would say your hematologist is correct. I have a host of co-morbidities like CHF, hx of lung ca x 2 (both caught very early), inflammatory arthritis, etc., and most of the time I feel good. Yes, I get tired and occasionally significant fatigue, but I try to ignore and just keep going. I am always planning my next trip ! Attitude is very important; I try not to become my "disease". While my mds hasn't progressed rapidly, I think I am still considered low risk even with white and reds affected, I try to focus on thankfulness that I am still here; not on what might not ever happen! I was told in 2002 that I would need a heart transplant and yet they were wrong! ALso, like Bailie says, we are all different, and our diseases are all different and don't follow a book.
As far as lightheadedness, I do get momentary episodes but they are b/c my blood pressure is quite low, and not related to my anemia.

[DanL]

I felt pretty much normal for almost 4 years with MDS. I had my moments of anxiety every few months, but was and am determined to live every day to its fullest. The nuisances of lower energy at times, easy bruising, and having to reduce some activities are necessary, but not limiting in my life. I spend a little time each day learning about the disease, in this case CGVHD as that is the stage that I am now in post transplant just so i have a handle on symptoms, what to ask the doctor, and then use that information to empower myself and prepare for any challenges should they come up.

For example, I have very little taste almost 4 months after transplant. I still cook new foods and try new things every day, knowing that i may not be able to fully enjoy it, but I will enjoy the process, and love seeing my family members enjoy what i am making, and also getting their feedback along the way.

I have also resolved to continue doing things that I like to do when possible, but to add items to my list that I have meant to get to so that there are no regrets. In many ways, MDS has helped me live in a way that I did not give possibility to in the past.

I am sorry if I strayed from your question, but I think that spending time appreciating all that you have and will have is the best way of dealing with the disease, of course adding in the sound treatment of your doctor, and accepting/utilizing the support of your family and friends.

[jmajjb]

Thank you for the stories. I am trying to figure out this dizziness and whether or not is from MDS. I am exercising and still working full time. Just trying to ignore the strange feeling.

[Cheryl C]

I sometimes have a wave of dizziness which makes me feel nauseous for a while afterwards. It always passes and is only occasional so I don't worry about it, esp since I also have quite low blood pressure (95/55 or lower sometimes).

Even though my average WCC drops every year (currently 1.2 and 0.4 neuts), as long as I feel well and am managing to avoid most infections, I'm content.

I want to assure you that it's possible to live a fairly normal life with lower risk MDS so try not to worry unless something serious goes wrong. Exercise is really important as is a healthy diet.

[jmajjb]

I worry too much! Could someone explain night sweats? Does this mean getting hot at night? Dripping with sweat or just uncomfortable? Does MDS cause night sweats or is it a sign of AML? The hematologist always asks do you have night sweats? What is the significance? I have been waking more frequently and feeling hot but was thinking it was my anxiety. Could anyone explain who gets these and what they mean? Thank you!

[sbk007]

It means actually sweating. Its a sign of Leukemia. Ask him/her why he/she is asking you that. It could be a routine question. When I visit my hematologist, Before I go in I fill out a form that lists about 50 symptoms and whether or not you have any of these. One of them is night sweats. But there are 49 other things like sleeplessness, stomach aches, depression, Vision(blurry vision),. FWIW you can Google night sweats and get a lot of info. lots of times people get them for a while or periodically and its of no significance.

[jmajjb]

What are the other signs of leukemia? Just curious...

[Birgitta-A]

Hi jmajjb,
Good that you have low risk disease !

The difference between MDS and leukemia is the blast cell count in the bone marrow - if we have 20% blast cells or more we have leukemia.

We can't feel that - it is only a way to seperate the diseases.

We can all have so called constitutional symptoms - many of them listed the form sbk007 fills in before seeing the hematologist.

Night sweats, tiredness, weight loss, low grade fever and dizziness are common constitutional (general) symptoms and all kinds of patients have this type of symptoms.
Kind regards
Birgitta-A

[Mseth]

Hi Birgitta-A,
On your mention of low grade fever-
My mother had fever, since temp went to 101 F, she was treated with Iv broad spectrum antibiotic. Blood and urine culture were negative. She responded well and came home after 3 days in hospital with oral antibiotic for 5 days. 10 days later she developed a low grade fever and it's been a week now. If this is one of the symptoms/effects of mds, how is it managed? Daily Tylenol does not work well for her appetite etc, though it does bring the temperature to normal. Docs advise that there's nothing to be done in terms of treatment unless the temp goes above 104 F.
Any suggestions and advice please?

[jmajjb]

Thank you for all the responses. I did google constitutional symptoms and found that night sweats can be found with MDS as well as leukemia.

[sbk007]

jmajjb, I hope you are feeling better.
Try to Google night sweats, then leukemia, then whatever it is you're looking for. The questions you are asking are broad and can have more than more than one answer. IF something was very wrong your hematologist would tell you.
If your doctor is asking this question each time its prudent to ask that doctor why are you asking me that? and what does it mean?.

•Depression medications (antidepressants)
•Drugs used to regulate your hormones (hormone therapy)
•Drugs that lower the level of sugar in your blood (hypoglycemic agents)
•Anxiety
•Autonomic neuropathy (damage to your autonomic nerves)
•Brucellosis (a bacterial infection)
•Carcinoid syndrome (a syndrome resulting from a certain type of cancerous tumor)
•Endocarditis (an infection of your heart lining)
•HIV/AIDS
•Hodgkin's lymphoma (Hodgkin's disease)
•Hyperthyroidism (overactive thyroid)
•Leukemia
•Menopause
•Myelofibrosis (a bone marrow disorder)
•Non-Hodgkin's lymphoma
•Osteomyelitis (a bone infection)
•Pheochromocytoma (a rare adrenal gland tumor)
•Pyogenic abscess (a pus-filled cavity caused by an infection)
•Sleep disorders (such as obstructive sleep apnea)
•Stroke
•Syringomyelia (a fluid-filled cyst in the spinal cord)
•Tuberculosis

[jmajjb]

Please forgive me for asking so many panicky questions but I am having a terrible time dealing with this. I am just so fearful! Day to day I feel hot periodically but never run a fever, dizzy or a buzzing feeling in my stomach. My sense of taste is still off. And now unexplainable aches in strange places, ribcage, armpit etc. they last a few seconds and then go away. I just had a complete workup at Mayo clinic 4 weeks ago and was told not to worry. Could things change quickly or is this anxiety? Any help would be great!

[Cheryl C]

Dear jmajjb - How often are you seeing your specialist? Make sure you write everything down to discuss with him/her. It's easy to forget when symptoms are intermittent.

Things can change suddenly with MDS, but just to reassure you I also get hot at night sometimes (not menopause) and I sometimes get weird bone aches and pains for brief periods, other times I have weakness in my legs and other symptoms mentioned previously. I always have red marks from slow healing wounds, bites, etc. Sometimes I have a few hive-like spots on my torso. This has been happening for around 5 years now so here I am to tell you that you can live with it, and not just exist but live a productive enjoyable life. I really think these symptoms are probably quite common with MDS patients. Even my blood results can be quite inconsistent from month to month at times. It takes a while to get used to all of this but if you really do have lower risk MDS, as time goes by you will become more relaxed about it. When I have an extra low set of CBC results I start to wonder if something's changing, but I wait until I've had another couple of lots of results and if it's not a trend I don't worry.

Hang in there! Stress can cause low WCC and neutropenia so it's really important to try to relax. Daily energetic exercise with help with that. St John's Wort tablets are a natural anti-depressant and can help your mood and your sleep too - obtainable at health shops here in Australia.

Please let us know how you get on at your next specialist consultation. We all care about you.

[jmajjb]

Thank you all for caring!

I am just having major anxiety from what I can tell. I saw a counselor this morning and she thinks I am grieving the disease- also I got the diagnosis shortly after the death of my dad and am still grieving that. I am placing myself in his situation and only think about dying! I know it isn't healthy and am trying to get my mind adjusted to thinking positive thoughts. It is just scary when I read the forums or any MDS site and see all negative things and short life expectancy. So naturally I think I am going to die soon.

I have normal energy, work full time and do exercise daily. So all the other symptoms of dizziness, heart beating in my stomach, feeling hot and the tongue issue seem to be anxiety. I went to regular Doc yesterday and had lymph nodes checked- normal. Also had Vit D, heavy metal and thyroid bloodwork. I was afraid to get a cbc which is not due until August 30th. I just could not handle any possible bad news.

I still cry everyday and have total meltdowns when my kids aren't around but will eventually pull out of this. ( I hope).

I started all new supplements and an anticancer diet that includes no sugar so am feeling so effects from that change. Does anyone know if the anticancer diets apply to leukemia?

I do believe that my MDS is mild like the hem at Mayo says, the first hem I saw still won't classify as MDS. He thinks some kind of hereditary sideroblastic anemia. The path report says MDS is not likely but should not be excluded until all other causes have been ruled out. The working BMB diagnosis is maybe early MDS.
I will probably be back freaking out about some other symptom but for now am feeling ok. Thank you- Jill

[Birgitta-A]

Hi Jill,
Good that you know that your symptoms depends on major anxiety!

I don't know anything about anticancer diets except that at the well known clinics like Dana Faber they recommend everything that is good for you like fruits.
http://www.dana-farber.org/Adult-Car...#Meal_Planning
Kind regards
Birgitta-A

[Birgitta-A]

Hi Mseth,
I am staying at my summer house and don't look att my pc so often - that's why I am late with my answer.

You know I never dare to take drugs like Tylenol because like all pain killers they can decrease platelets (other similar drugs are more dangerous).

Then I always want to know my "real" temperature - I control it every evening since I have had neupogen fever three times.

Besides your mother loses her appetite so she should not take Tylenol.

Ask her to continue to control her temperature and contact her doctor if you think it is too high or if she has other signs of infection.
Kind regards
Birgitta-A

[jmajjb]

Vitamin D level came in at 30 after taking 6000IU daily for 4 weeks. Wish I would have had a baseline level. Does Vitamin D possibly lower platelets? She now recommends 15000IU daily for 8 weeks and then retest.

[kyis]

j,
I have certainly felt your anxiety and a host of symptoms (even the tongue) and feel for you. Even the loss of a parent to the same disease, but certainly as the years have gone by most of it really is stress and anxiety. For me staying busy and living life is the best medicine. Listen to your doctors and relax (best you can). I continue to feel great, keep telling yourself that, it helps, if not maybe even a cure.

[jmajjb]

kyis,

Do your anxiety symptoms ever subside? I get this strange dizzy feeling almost everyday for 3-4 hours, and tongue tingling continues although it is improving slowly. Have you had any treatments yet for the MDS? My Docs all say that I shouldn't feel any dizziness at my level of Hgb 11.5. I have gone on a different diet so may be contributing to dizziness?

[bailie]

Is your blood pressure ok?

[jmajjb]

My blood pressure does run low. Have been told by hem. to drink Gatorade. That does help sometimes- not always.

[kyis]

Very little anxiety, I'm sure some will always be there when you are watch and wait. Probably not more than an hour or so total per month, don't really think about it. Overloading on info and the internet certainly doesn't help. I think sometimes with a lot of illnesses you just have quirks here and there, the secret is not to let them take over. Remember you feel great. The positive attitude is much better than the worrying. I think a person really can imagine themselves sicker than they are, luckily the opposite works also. Just my two cents.