How can I get treatment for an aggressive illness?

Posted by ldn61 @ldn61, Sep 16 1:17pm

About four years ago I started having, what appeared to be, non-multiple sclerosis neurological symptoms. My MS was slow progression and then frozen with mavenclad. Many tests and blood work gave a diagnosis of multiple myeloma. For about six months all confirmed that diagnosis until I got a bone marrow biopsy. Test came back negative and the diagnosis reversed. Now, all squirrelly abnormal results are seen as "normal" form me. And the symptoms treated with a fistful of pharmaceuticals. Unfortunately, I keep getting worse overall. Nothing seems to ever appear in scans or tests. Anything that appears gets retested until everything can be explained away as some known condition or old age, (I'm 64), or something. But this illness is affecting most everything and getting worse. I'm just at a loss for what I can possibly do. I've been seen by so many specialists that I can't even keep track of them! I saw a complex care doctor who said that this is a separate condition. However, he couldn't put a name on it. I feel like I have good doctors, though I have concerns about modern corporate medicine. I just want to be properly diagnosed with proper treatment options. Fistfuls of pills doesn't do anything for my underlying illness.

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laura1970 | @laura1970 | Sep 16 1:59pm

What are your symptoms, exactly?

I’m sorry you re going through this. There is much empathy and knowledge on this website.

ldn61 | @ldn61 | Sep 16 3:07pm

It's so hard to summarize as everything from my ability to move, lots of bone pain, difficult breathing, voice freezing, vision, blood pressure drops and pulse too, numbness, neuropathic pain and more. Basically, it seems like my body is just shutting down. I do have a complicated medical background, including my MS. I wonder if the multiple myeloma diagnosis was the coolest disease but the wrong location. But, no one seems to be looking.

laura1970 | @laura1970 | Sep 16 7:04pm

What specialists have you seen so far?

I have a different diagnosis (arachnoiditis) and I know how frustrating it can be to find a doctor with the expertise to evaluate and treat your symptoms.

Many hugs, Laura

kobe2026 | @kobe2026 | Sep 17 11:20am

John Hopkins Multiple Sclerosis (MS) Overview
https://www.hopkinsmedicine.org/health/conditions-and-diseases/multiple-sclerosis-ms
Brain Institute-Understanding Multiple Sclerosis
https://www.ohsu.edu/brain-institute/understanding-multiple-sclerosis#:~:text=Make%20an%20appointment-,Brain%20Institute,-OHSU%20Home
Right Decisions for Health and Care
https://rightdecisions.scot.nhs.uk/media/dgridmos/his_rds_white.png
Hope this helps as a start point to explore for you.

laura1970 | @laura1970 | Sep 19 10:08pm

Are u taking any meds for MS. My first thought is that some of your symptoms could be side effects from meds

ldn61 | @ldn61 | Sep 21 8:31am

My MS was treated with Mavenclad, a two year regimen whiy

ldn61 | @ldn61 | Sep 21 8:41am

In reply to @laura1970 "Are u taking any meds for MS. My first thought is that some of your symptoms..." + (show)

Part 2:
I have difficulty seeing and typing with shaking hands. Continuing my reply... mavenclad modified the immune system and pretty much halted all my symptoms in place. However, this new illness just kept getting worse, uninfluenced by the treatment.vb Any meds which I was on during the onset of this new illness has been changed. All my blood work keeps getting worse, too. However, I wonder if my kidneys are suffering from all the symptom management meds they keep thrusting upon the. I try hard to be conservative about taking meds and treating my body in a very healthy manner.

ldn61 | @ldn61 | Sep 21 8:56am

In reply to @laura1970 "What specialists have you seen so far? I have a different diagnosis (arachnoiditis) and I know..." + (show)

That's a substantial list... Of course my neurologists, including my MS specialist, Hematologist, (my prior oncologist), cardiologist, pulmonologist, rheumatologist, pain management, dermatologist, ears nose and throat and a complex care specialist. Not sure if I remembered all of them.

Pretty much get that this is a new and separate disease that appears to be neurologic in nature. Most everything else is symptomatic of this. My other non-neurological health issues are not significant.

ldn61 | @ldn61 | Sep 21 9:27am

In reply to @ldn61 "That's a substantial list... Of course my neurologists, including my MS specialist, Hematologist, (my prior oncologist),..." + (show)

Another continuation...
Can't believe that I forgot my gastroenterologist, urologist opthalmologist and neuropathologist. Hmmm .. I wonder if this is all of them. Lol.