Re: Symptoms or Just Whatever?

[Guest guest]

Hi ,

I went through the very same symptoms.2 years later I still

have a hard time with being sensitive to confusion.It does

get better.I have both CLL and SLL and was treated with CHOP

with Rituxin and have not had treatment for 2 years.

Keep a positive attitude as it goes a long way. Find

something to do, to keep you occupied and more importantly

to keep your mind working. Regular exercise when you have

the energy for it helped me a lot.

Best of luck

Stefano

[Guest guest]

- CLL is a PECULIAR disease and totally UNPREDICTABLE. You might very

well be experiencing the symptoms you describe. What is important is that

they are vague and really do not indicate that you should be treated. As

for myself, every time I get another piece of bad news about my medical

condition I develop numerous symptoms such as the ones you describe. I do not

mean to belittle them, but the mind is a very strong player in this.

In a message dated 2/16/2011 8:30:41 P.M. Eastern Standard Time,

stacyherman@... writes:

Hi,

Thanks for the forum. I notice this forum mainly talks about treatment and

complex scientific issues that intimidate me. I was diagnosed in Nov. My

bloods seem stable. However I have absolutely no energy, I'm very sensitive

to light lately, I feel dizzy sometimes, cannot focus on certain tasks that

are complex. Should I worry? Any advice or words of wisdom?

[Guest guest]

Hello ,

 

I too am in early stages of the disease and experience the same. The light thing

is most prevalent first thing in the morning. Physical or mental stress, and

sometimes just fatigue, seem to contribute the confusion. The good news, at

least for me, is that these symptoms seem to wax and wane.

 

One thing that I have learned to do is to back off on stressful (physical and

mental) activities when I feel extreme fatigue or confusion coming on. I used to

run several miles a few times a week and lift weights. Now I will walk (which

sometimes will affect me negatively) or exercise at a lesser level when I can.

Hang in there!

 

R. (Poconos, PA)

From: stacyherman@... <stacyherman@...>

Subject: Symptoms or Just Whatever?

Date: Wednesday, February 16, 2011, 6:48 PM

 

Hi,

Thanks for the forum. I notice this forum mainly talks about treatment and

complex scientific issues that intimidate me. I was diagnosed in Nov. My bloods

seem stable. However I have absolutely no energy, I'm very sensitive to light

lately, I feel dizzy sometimes, cannot focus on certain tasks that are complex.

Should I worry? Any advice or words of wisdom?

[Guest guest]

I am unique in that I complained to my doctor of extreme exhaustion and a great

increase in transient mental memory episodes - ie where I say wrong words

thinking I said right ones all along, or just blank out on what I am saying or

doing for a while - and I get these odd boils (except they are not pus filled,

usually dark) that - rarely - happen anywhere on my body.

All this has been worse for years, o and exercise intolerance. I work full time

(senior tech support for a software development company) and have been married /

raised 2 kids thru-out.

I was tentatively diagnosed with a glycogen storage disorder but it is atypical

.... If that's my issue for the past decade (and prior) then it is a rare and

hitherto uncharacterised " type " of GSD.

I had put all symptoms down to that, before. I have only just been diagnosed

with CLL, not yet seen a specialist and not yet had FISH testing.

However, my symptoms are similar to those in this thread and have been

exponentially worse in the past year. I have started weight loss - I lost 50 lbs

in one year, and to think I was all pleased ...

Mine could not have been psychosomatic tho, as my diagnosis of CLL was after I

talked over all these symptoms with the doc. I have had the other diagnosis for

more than a decade, and was stable thru-out that time ... Was just concerned at

the recent changes, and the CLL diagnosis has come after seeing the symptoms

change etc.

I am still working full time, and that will continue. My workaround includes

going to bed very early, being careful with my energy output, using meditation

for pain control (I have for years had what feels like bone pain) ... But it

does seem from what I am reading that a subset of CLL patients have similar

symptoms ...