15 Years + Cancer To Get Here...

[jem15]

Hi all,

I'm new here. Just a brief synopsis.. was undiagnosed for 15yrs, other than speculated CFS, now 31, but symptoms started at 16 after a virus, next week felt faint, lightheaded, dizzy, fatigue, heat intolerance, etc... and the symptoms never left. Same symptoms got worse each year and in year 13 got really bad , and was then diagnosed with Hodgkin's lymphoma. ( I know, how cliche for bad luck in year 13) Though the cancer and chemo severely aggravated my symptoms, the doctors said I got cancer on top of things and that wasn't the cause of my symptoms. A couple months ago, vestibular therapists and neuro-optometrists noted I have visual-vestibular dysfunction, kind of means the brain is not processing info correctly from those 2 systems, which can cause/add to the lightheaded/dizziness... but then I also got the POTS diagnosis and that seems to explain a lot of my symptoms. The visual-vestib. thing may be partially related to the POTS, but it also may not, according to the doctors.

Work has always been hard for me, and I've had to modify my jobs over the past years to compensate for the declines in functioning. Since the cancer/chemo, I haven't been able to work. My chemo ended over a year ago, and I'm still not functional enough to work or drive, etc. My tolerance for activity has been so low, despite my consistently pushing to increase activity levels and consistent exercise. I have to force through everything, which I've always had to do, but now, I just can't push through as well anymore, my body just can't handle it, no matter how hard I want to or try. This is not a typical reaction to my chemo. It should've been "easier" and I should be totally fine now according to my oncologist. Ha, he thinks nothing is wrong with me and doesnt believe me, but now I know it's the POTS/ visual-vestibular dysfunction, that's complicating things.

Anyway, all that background to see if anyone has been in a similar situation and got cancer when they already had POTS? If so, did you experience not only the worsening in symptoms during treatment, but also afterwards and for how long? My concern is even though it would seem kind of obvious for previous conditions to get worse with chemo, it's already been over a year, and I'm concerned with how long it's taking to recover. I thought I'd at least be better than I was compared to at the time of diagnosis. I thought minus the cancer, I'd feel better than I started, even if I still have what I now know to be POTS. My condition has slowly gotten worse from year to year and I also wonder if any of you have experienced that with your POTS? I wonder if the cancer just complicated things, or sped up the decline, but I already wouldve gotten this bad at some point anyway?

My huge fear was not being able to work and support myself, as I'm single, live alone and have no one else to care for me. I'm currently on my company's long term disability, and am also fighting with SSDI to secure that. It's incredibly difficult though and exhausting, also it doesnt help with health insurance since it's 29mo from SSDI approval to be eligible for Medicare. Anyway, sorry for the long post, ha I really was trying to condense things, but I'm just curious if anyone was sick for so long, and continued to worsen, if there's still a shot at getting better? Ha, right now, I still hope there is, and considering I'm finally trying treatments more tailored to specific conditions (right now Mestinon, and vision/vestibular therapy), I'm hoping I at least have a shot. But I digress, if anyone's had any similar experiences/diagnoses, I'm curious to hear your experiences. Thanks!

[lieze]

I'm curious as to how your visual/vestibular dysfunction was diagnosed?

I feel like I have this too to some degree and it feels so weird.

That's awesome that you got through your cancer.

Don't give up keep pushing to do a little each day.

Do you feel like your level of functioning is fairly consistent or do you have good days and bad days?

Sorry for so many questions.

[Maxine]

With the oncologist saying you should be fine by now----does this mean you're cancer free? Are you in a full remission?

I've been having rough time lately, but reading your story makes me feel fortunate for what I have, as I know many of you live alone, and have to carry yo though this by yourself. Do you have family/friends support------------do you live away from family? Do you have someone to advocate for you whe you are too symptomatic to speak for yourself?

I know for some of us, support still isn't there even if family lives around the block. Friends often slip away from us because they don't understand, which can only mean they weren't friends to begin with. I still have some who have weathered the storm with me, and try to understand the best they can. I hope you have people like this in your life.

It's tough to stand up to some of the dismissive doctors when your weak and tired.

My heart goes out to you............I don't live alone, but I know many people who do, and some of them younger then you. We used to have a local support group. I met some people with POTS who live alone through the years, and sometimes when I'm having a bad spell I think of them, and how rough it must be going through this alone. I wish I had the resources to find a way to make this go away for all of you who struggle with this by yourselves.

I heard mestinon has helped many people, and in fact I know a woman locally that it's helped a lot. She is much more functional now. I'm sure having hodgekins lymphoma hasn't helped. You're oncologist needs to understand how difficult it is for your autonomic nervous system to deal with other illnesses, when it's already having trouble functioning correctly. Anything else that goes wrong outside on the POTS/ANS dysfunction usually always makes us feel even worse, and it's very difficult trying to get ourselves back to what "our normal" is.

I admire your courage, as I can only imagine how it must be for you.

Stay here with us, let us comfort you, and offer OUR support and understanding.

HUGS,

Maxine :0)

[houswoea]

Welcome! We're happy you're here!

I can't believe you even NEED to fight the SSDI people! I'm going to punch them in the face.

Seriously, what are they expecting from you, superhuman stregnth?

Thanks for sharing your story,

Liz

[jem15]

Thanks everyone for your replies. And no apologies for the questions! Just as I am looking for support, I'm glad to answer others' questions if it can help in any way. I have had a long, crazy journey so far, as I'm sure many of you have too, but I have to say all the craziness has led me to learn a lot, not only medically, but also regarding advocacy, and finding other resources. So to answer some of the questions...

Re: Cancer: So far, yes, I seem to be in remission right now. But I do still have night sweats consistently, which my oncologist feels can't be lymphoma related if I'm in remission, so just to ignore them. It's possible they're due to the POTS, (since I've have everything else hormonal, etc tested) but I only got them the year before the cancer, so I went about 12 years or so without them. So I'm not 100% convinced. Also, all my cancer didn't even show on my first 2 CT scans. My doctor wasnt even going to biopsy me, I had to go to other doctors cause I knew something wasnt right. I could feel the lumps so knew they were there, but the scans came out ok. The biopsy diagnosed it. Even after diagnosis, my 1st PET before chemo came out negative! Then I had them re-look and they saw only one area in my chest, out of 4 known areas. And it wasn't showing up brightly. So... I don't have a lot of faith in the scans, but still have to hope that if it seems clear, it really is. Ha, we'll see...

Re: Visual-vestibular dysfunction: This is a big topic of interest to me lately. I may even post separately on it to see if anyone else has experience with it. I'd totally recommend looking into it if you have symptoms of lightheadedness and dizziness, and if you feel certain visual or vestibular tasks make you worse...or if you feel yourself wanting to close your eyes or look out of one eye alot. It's not only been very interesting to learn about, but gives a little more insight into the mechanisms behind some of your symptoms, with the hope that therapy can sort of "re-train" the brain. I like that it's a non-drug treatment to experiment with. It just can be costly depending on insurance.

I initially found out about it when I asked my neurologist to prescribe vestibular rehabilitation for my lightheadedness/dizziness. (I have a constant state of lightheadedness, the dizziness(falling/spinning) is on/off. I NEVER go without symptoms. I just have days where I'm at my "usual baseline" which has worsened from year to year, and recently even month to month, or days where it's much worse. Certain things worsen it ("too much" activity, waking up early, heat, period, etc.. and sometimes it's random)

You want to find some certified as a vestibular therapist. There, the test that "caught things" was something called an SOT(sensory organization test). You can google it, the company's website will come up. It showed my brain is not processing vestibular or visual info correctly. I was then referred to a Neuro-optometrist. That's who you'll definitely want to see about the vision component, a regular ophthalmologist will not be able to tell you anything, and probably not a regular optometrist, but it depends on the background. If you find the neuro optometry association online, it'll list specialists. I'm in NJ, so I dont think that helps anyone, but if youre close to there, I can give you names. I've seen two neuro-optometrists. The first picked up on visual processing problems, intermittent supression of my eyes, plus I have convergence insufficiency, which I already knew about, but that just adds to things. The 2nd one knew more bout vestibular stuff, and focuses more on using different prism glasses along with therapy. Apparently different prisms can be used to train your system and also to help take away symptoms. I just am starting this so I can't report much on the effectiveness of treatments yet. But apparently just like with POTS, the progress is variable, depending on the person. So may or may not work, but worth a shot if youre desperate like me! And at least its something to try after all these years!

Ok, since this is long, I'll stop there. I think I answered most.. oh, but yes, it is hard doing it alone, but you do what you can when you have no choice. I have parents that are close, but very limited in when they can help. Friends are supportive but an hour or more away, so it's tricky. But I've somehow been making it work, had to rely on random strangers, neighbors I just met, etc.. too. Ha, and yes, SSDI is crazy! I do think we're expected to be superheros cause I held out for like 13yrs before collapsing. Ha, and I think that's pretty **** good!

[lieze]

You can say that again about doing pretty good! Give yourself a pat on the back you're giving me courage!