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Just checking in

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Hello my friends and fellow LTSers!  First of all, let me apologize for being mostly absent from the forums for quite awhile.  It has taken me a long time to even get up the 'will' to try to write a post, because things are so weird for me these days.  I have been experiencing mental issues, as in REALLY POOR MEMORY.  Doctors visits have all run together in a never-ending blur....I try to write everything down now, and even that doesn't always work. 

Quite a few months back, I started experiencing shortness of breath, upon little or no exertion.  Just walking across the room can do it for me, to say nothing of climbing a flight of stairs.  I was referred to a pulmonologist, who put me through a barrage of testing; his conclusion was "mitochondrial myopathy".  It's mostly one of those things that "oh well, you have it but there's not a lot we can do about it".  He referred me to a neurologist for further testing.  Upon my initial exam with this guy, he decided that that was not my biggest concern, that I had "other things" that needed more immediate attention.  He has put me through a barrage of tests...the needles in the muscles thing (maybe EMG? does that sound right?) and most recently "evoked potential" which is one of the weirdest tests I have ever had in my 25+ yrs of dealing with hiv.  Also, I had a MRI of the brain and spine.   I have a feeling we are playing "go fish" with all this medical testing...just cast out a line, see what you reel in.  So far, they aren't really finding anything (that they are telling me about).  Trying to get care in today's world of medicine is a trip in itself.  I have seen the quality of medical care go from top notch (80's) to bottom of the charts (2013).  For example, I had this MRI and evoked potential a few weeks ago; my next appointment (to find out the results) is not until Nov. 5th.   I have a feeling this guy is going to say "sir, we've discovered that you have pretty severe peripheral neuropathy, and we can put you on neurontin/gabapentin if you'd like to try that".   I told them DAY ONE that I have had PN since 1992, and no, I did not want the neurontin, I don't like it.  Before the testing, he did mumble something about being concerned that my blood/brain barrier was not being crossed with HAART therapy....

I was so glad to receive the latest POZ magazine, and see that it was about Longtime Survivors!  In one article, a guy expressed my feelings so well:  "it's like being a Martian, living on Earth; except no one knows you are from Mars".  I look forward to reading the whole magazine.

I was recently so blessed to get to see Jan and her friend Jen again; we have not been together since 2007 in San Francisco.  We had a great time at JG's house, and I am also very thankful for him and his friendship.  We serve on a Patient Advisory Board together at our clinic.

I'm going to try to not be such a "stranger" and check in more often.  Some days, my brain is firing on all cylinders...some days, not so much so. 

Much love and appreciation to all of you,


Glad to read you're back; sorry to hear about such troubles.
What's that old saying, "if it's not one thing, it's another" LOL
Hang in there!

by the way, we just passed the Tin Man's b-day. Jack Haley's was born on Aug 10, 1898 ;)

Alan, I'm typing this with pain jolting through my right foot, so I sympathize with the PN issues.  I'm so sorry you're going through all that bullshit.  I agree, medical care has declined.  One of my clients has growing KS.  He was seeing a local infectious disease doctor.  The doctor kept telling him "we'll just watch it."  WTF?  It's spreading!  So, I send for his labs, get them, and find out he's had a detectable and growing viral load for a year!  WTF is this doctor doing?  Luckily I was able to go to his primary care doctor's with him and demanded a second opinion.  He saw an oncologist and is on some liquid chemo med.  And also got him into see my doctor for the HIV issues.

So I agree about the medical care.  It has really gone down.  I cannot imagine the frustration you're going through, wanting to know what's going on, and not being told squat.  I hope you're able to keep your sanity through all this!  I believe you're pretty resilient, though I know we all have our breaking points.  Hang in there, pm me if you want to and I'll send you my number.  Luv ya!  Glad to see you posting.

Jeff G:
Hi Allen , I sympathize with you and know how you struggle . You are always so gracious and smiling when I see you Layne it could be easy to forget how much we share in common both past and present .

I think many of us LTS folks walk the earth without most mortals realizing what it cost us to be here , what it took .

I'm very happy to call you my friend and its my hope that you join us here more often . 

Hi Alan,

Your post touched a nerve. The part about the blur off tests.Last week my Pain control Dr. suggested a referral to the Neurologist because off the increasing problems I have with balance.

I declined, as I am also in the middle off dental work and know how much it takes out off me more than one medical appointment a week. So as the Pain Control Dr agreed it was highly unlikely that the neurologist findings would change much for me other than possably giving more info for us all . I will wait until the Mouth work is finished and hope that I don,t break anything with my at least weekly falls.

Its alarming to read all your comments about the decline in Care. And Bt your clients experience Falls into the catergory that I feel is emerging ,  that with combo treatment illness its a thing off the Past , the Pills will keep the immune system strong and that will fight off what may emerge. This confuses me as I have had all my serious illness with a negative viral load .

In the UK anyone receiving benefits is under ever increasing scrutiny , I am awaiting along with everyone else who receive the benefit a complete reassessment. This reassessment carried out by a company that won the contact Has a 40% fail rate. And a huge overturn figure on appeal . Scandals have emerged about there decisions and still our Government push through like a blind bulldozer, It feels so much less secure now to 5 even 10 years ago. Then I had been awarded benefits "for life" and could put all my attention into getting and staying well, now We wait for the ax to drop and our incomes stopped until the appeal process finishes . A comedian on the radio said that the Disability assessment panel had been renamed Lourdes , you went in ill came out totally cured.

Glad you intend to hang out here more see what your post has generated already.

BTW , was the weirdest test the one where your are strapped standing , monitor wires a spaghetti from you to bleeping machines , and they wait to see if you faint within an hour?

The very best to you


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