Misdiagnosed?

[Klemery]

My doctor says it's just fibromyalgia. I was diagnosed with fibromyalgia in 2003 and AML (Acute Mylogenous Leukemia) in 2008 (40mo remission). Over the past 6 mo or so I've had worsening symptoms with a gradual onset of weakness and fatigue in my arms, followed by muscle twitching in my right hand, some numness and tingling in hands, and cramping in the arms and right hand. I have also noticed my right forearm, wrist and thumb are now considerably smaller than my left (I am right handed), and it seems much weaker. Thank you in advance for reading.

[teenyturner]

Hi,  I found this on a chemo side effect site.

Nervous system

One study has reported 8 of 49 patients treated with high dose cytarabine developed cerebellar and cerebral toxicity. In another study 4 out of 24 patients developed treated with high dose cytarabine were reported to have developed cerebellar degeneration during treatment. Acute cerebellar toxicity after high dose cytarabine has been associated with CNS accumulation of its metabolite, uracil arabinoside.

Nervous system side effects have been reported in up to 10% of patients and have included neuritis, neural toxicity, cerebellar toxicity, lethargy, confusion, and headache.


Hope I'm not doing something against the rules here but thought it might answer some of your questions.

Regards

[Klemery]

Thank you JJ , I am going to to do just that!

[Klemery]

I completely agree with you Sara!  I know so many doctors are just making the dx of fibro because they don't know what is going on...It sees to be the new "catch all" dx, which isn't good.

[SarahL2491]

I agree with jj, also often our comments are based on the more/less information which you provide to us, we are, after all, just patients
who "hang around" together

keep us posted, we all learn from interaction and sharing!

[supermum_ms]

Hi and welcome,

To be honest, given your dx medical history, treatments eg chemo etc. i really think you need a second opinion or at least a consult with your oncologist about whats happening to you now. If he/she is any good then testing or relivant medical field consult should be who your refered on to.

I do have doubts that this is related to something like MS, thats mainly because of the plethra of MS mimics and your description of atrophy doesn't typically fit. Your timeline is also very short to be spreading to both sides, if it was MS and i did read something once about similar chemo related side affects, presenting years afterwards so i'm thinking its still a possibility.

Get a second opinion if you have any concerns that your not being heard!

Cheers.............JJ

[Klemery]

Hi Chirley,

Wow, glad to hear you've made it through all the chemo, but am sorry to hear you are still facing problems!!!
I did not know about cytaribine causing neuro problems. It's bad enough I suffer from terrible tinitis and hearing damage from vancomyacin and amphotericin. I did not have a BMT, but I did have to go through 2 inductions to achieve remission.
Since we moved I have not seen my oncologist in over a year, because it's a several hours drive away...i figured I was far enough out in remission I'd know if I was relapsing.

Good luck to you too,
Kris

[Klemery]

The tingling, pins and needles and occasion burning sensation started in my right hand and now if affecting my left hand, right thigh and outer side of the right foot.

[Klemery]

I was diagnosed by a rheumatologist with fibromyalgia back in 2003. Due to a relocation last year, I had my records transferred to a local DO for my primary care. I do not dispute the fact I have fibromyalgia, I question whether or not my new symptoms are from fibro or if I also have something else going on.
Why after so many years would I develop such different symptoms???
When I started to notice the progression of new symptoms, my doctor just told me it was a part of fibro and only order blood work at the time, which for the most part was normal. I'm not sure if my doctor is listening to me or if he just lacks knowledge of fibro.
I think I'll just take it upon myself and go see a neurologist! Thanks all for your comments:)

[teenyturner]

Hi Klemery,

I was diagnosed with MDS which, despite chemo, was progressing to AML.  I too started getting, twitching, tingling nerve pain, slight muscle wasting and weakness.

Long story short.  Turns out I have a metabolic disease which prevents me utilizing copper and other metals properly.  I supposedly, never had MDS in the first place! My blast count had been rising quite fast until I started IV copper when it dropped and has stayed stable at 8% which is still above normal but a lot better than it was.  

My haem is starting to wonder if he has stumbled onto a rare cause of AML.  He said the AML itself isn't caused by this metabolic problem but that the bone marrow dysfunction which precedes AML maybe caused by an impaired metabolic process.

Unfortunately, despite treatment my neurological function hasn't improved and it seems to be slowly worsening.  I have times when it seems stable and then a sudden deterioration then stable again.  The same with my blood counts.  They were responding well for some years but lately I have reduced counts on all three cell lines despite treatment.  I'm due for more tests and treatment on Monday and am hoping that they have stabilized or even have improved, fingers crossed.

I hope that what you have isn't related to my condition after the kind of chemo you would have had for AML (? BMT) you would have been through enough already.  BTW have you asked your oncologist about the possibility of chemo induced neuropathy.  My haem said that cytaribine can cause neuro problems.  He had a patient with chemo neuro problems and he gave high dose B12 and fish oil with good results.

Best of luck.

Regards

Chirley

[jensequitur]

It looks to me as if the symptoms are actually lopsided - weakness, twitching and cramps in the right hand.  Is the tingling one-sided or two-sided?

[SarahL2491]

to start with fibro is not a legit diag unless you have been dx by a rheumatologist and have had so many of the pressure points prove "positive".  You can google it and it will tell you where they all are up and down your back.  Any other dx of fibro is just a "we don't know what is wrong with you ergo you have fibro"......and for that we actually pay them.....

I don't think its MS, your symptoms appear to be bilateral, MS tends to pick one side or the other to start with and does not appear as gradual numbness.

You would have to have Mri's done and labs and all of the mimic diseases ruled out.  The fact that it appears you are saying that your limbs are smaller on one side is not an MS factor.

I would suggest a neurologist for starters, to deal with the numbness.  You may have something pinched in your spine or a nerve somewhere and MRI and CT can rule these things out.

Good luck and we really hope you do not join our club

[jensequitur]

I've had ongoing problems with weakness, but as far as I can tell I don't have any serious atrophy of my right leg or right hand.  At this point it sounds as if you have some neurological symptoms, but the neurologist will have to help investigate further.

It's quite possible that you have been misdiagnosed - things like MS and fibromyalgia are very difficult to diagnose.  Definitely follow up with your doctor and let us know what they say!

[Klemery]

My question is could there be something else going on such as MS?