Do I have scleroderma AND leukemia? Please help!

[ideamktg]

Wow, it's been so long since I've posted.  In 2007 this website saved my life when I developed systemic sclerosis.  But after seeing numerous physicians and countless tests, I think I may also have something called POEMS sydrome, a rare form of multiple myelmia, which is a type of leukemia.  How can this be?  To have something as rare as systemic sclero was bad enough, but then to also have something even more rare is a curse. 

Please help me with this informal poll.  For all those with sclero, did you also develop any of the following:  insulin resistence (diabetes), hypercholestrol, darkened skin, lots of coarse, hair growth on your body, protein in your urine?  And most importantly, numbing/tingling in arms/legs, clumsiness?  Please respond… Annie

[Maz]

[user=1566]annie_hawaii[/user] wrote:

Please help me with this informal poll.  For all those with sclero, did you also develop any of the following:  insulin resistence (diabetes), hypercholestrol, darkened skin, lots of coarse, hair growth on your body, protein in your urine?  And most importantly, numbing/tingling in arms/legs, clumsiness?  Please respond… Annie

Annie, forgive me…it's late here in CT, but just quickly reading through your symptoms, it brought to mind polycystic ovarian syndrome…the insulin resistance, diabetes, male pattern hair growth, hypercholestremia…and I think it can also correclate to protein in the urine, if memory serves. Have you been checked for PCOS?

I've just checked out Wiki for POEMs and it seems that this disorder can also cause peripheral neuropathies such as you're experiencing, skin hyperpigmentation and endocrine disoders, which may account for why your other symptoms seem to be such a close match to PCOS.

http://en.wikipedia.org/wiki/POEMS_syndrome

I'm so sorry to hear you have also been dx'd with POEMs, as if the sclero wasn't enough. Is there a suggested treatment for this?

I hope someone else here will be able to some insight for you and that you will be able to find some answers soon. In PCOS, I think the usual treatment is to go on to brith control pills to normalise hormones and diminish the effects of excessive testosterone.

Bless you, Annie, you've come such a long way…stay strong and keep the faith.

Peace, Maz

[Kim]

[user=1566]annie_hawaii[/user] wrote:

Please help me with this informal poll.  For all those with sclero, did you also develop any of the following:  insulin resistence (diabetes), hypercholestrol, darkened skin, lots of coarse, hair growth on your body, protein in your urine?  And most importantly, numbing/tingling in arms/legs, clumsiness?  Please respond… Annie

Annie,

I am so sorry things are not going well for you ~ seems you've been caught up in this never-ending nightmare for a long time.

The only symptom in the list you mentioned that I've had is the numbness and tingling, but that is almost entirely gone.  What I've had success with to improve my circulation is frequent use of an infrared sauna and enzymes (Neprinol is what I take).  I tested high for hypercoagulation (thick blood) and this has helped tremendously.  My Raynaud's is just something I never think about anymore.

If you have access to a functional medicine doctor it may be a good idea to let someone study all the imbalances going on and try to get things working on a more optimal level.  I don't have easy access to one, but am getting ready to travel to one of these specialized md's to sort out some remaining problems I have, mainly thyroid, gut, and absorption problems.

Sending healing thoughts your way, Annie.

Take care…..kim

[whaleharbor]

Annie,

I can only speak for myself but to answer your poll.  I have RA.  I had Graves Disease (over active auto immune thyroid) Doctors have suspected that I have PCOS for my entire (reproductive) life even though I don't have all of the symptoms….but the symptoms for PCOS include all of the ones you listed including insulin resistance, hair growth, etc….  My mother had the same symptoms as did her Grandmother for certain. 

There are many ways to deal with PCOS including as Maz stated birth control pills (to deal with one of the symptoms of irregular periods) but one can also take prometrium/provera to bring on periods.  Also metformin (a diabetes drug) is used to regulate periods.  Finally simple dietary and exercise changes can help many…including…gluten avoidance (imagine that).  Google it and you'll see more info on PCOS than you ever wanted to know.

I can't tell if your diagnosis is from a doctor or something that you suspect from your research.  If it is from a doc, nothing lost in getting a second opinion, right?  If it is from your own research….please go see a doc with your concerns.  You might be wrong. 

If it is PCOS….
Interestingly, I went to see the best Reproductive Endocrinologist I could find and he told me that he believes that PCOS is autoimmune in nature and that someday the medical community will find that out and treat it accordingly.  Unfortunately short of dealing with the symptoms with more meds he had nothing for me.  I'm trying a gluten free diet (argh).  Anyhow, in the medical community PCOS is not considered a disease but a “syndrome” or rather the way that we are wired.  I can tell you this, when I followed an Atkins type diet years ago all my symptoms went away…too bad the Atkins diet made me violently ill otherwise.  It's all a balance I guess….

I will pray for you.  Please keep us posted.

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[ideamktg]

Hi Maz, thank you so much for the reply.  Apologies for taking so long to respond, but feeling rather overwhelmed, frustrated, and angry.  Can't seem to rally myself, but I greatly appreciate your post.  I've been checked out for PCOS.  Seems with the neuropathy, polythesias, foot drop, I'm headed for this POEMS diagnosis.  Looks like a rare form of multiple myeloma, seen in Japanese, which my father was.  Treatment is good old fashioned chemo, with no guarantees. 

[ideamktg]

[user=40]Kim[/user] wrote:

[user=1566]annie_hawaii[/user] wrote:

Please help me with this informal poll.  For all those with sclero, did you also develop any of the following:  insulin resistence (diabetes), hypercholestrol, darkened skin, lots of coarse, hair growth on your body, protein in your urine?  And most importantly, numbing/tingling in arms/legs, clumsiness?  Please respond… Annie

Annie,

I am so sorry things are not going well for you ~ seems you've been caught up in this never-ending nightmare for a long time.

The only symptom in the list you mentioned that I've had is the numbness and tingling, but that is almost entirely gone.  What I've had success with to improve my circulation is frequent use of an infrared sauna and enzymes (Neprinol is what I take).  I tested high for hypercoagulation (thick blood) and this has helped tremendously.  My Raynaud's is just something I never think about anymore.

If you have access to a functional medicine doctor it may be a good idea to let someone study all the imbalances going on and try to get things working on a more optimal level.  I don't have easy access to one, but am getting ready to travel to one of these specialized md's to sort out some remaining problems I have, mainly thyroid, gut, and absorption problems.

Sending healing thoughts your way, Annie.

Take care…..kim

Hi Kim, thanks for the reply.  Sorry it took me so long to respond, but I'm feeling somewhat overwhelmed by all this.  It seems to me this whole scleroderma thing is like a forest fire.  In the areas it's burned through (eg skin, hands, etc) there's healing and regrowth, but now it seems to be moving internally, esp my GI tract.  When I look at scleroderma pics of other people, they don't look anything like me.  My skin has gotten very dark, I'm becoming obese.  I'm having a difficult time rallying myself to take charge of my illness and want to get better.  I think it may be time to talk with someone.  Ann

[ideamktg]

[user=217]whaleharbor[/user] wrote:

Annie,

I can only speak for myself but to answer your poll.  I have RA.  I had Graves Disease (over active auto immune thyroid) Doctors have suspected that I have PCOS for my entire (reproductive) life even though I don't have all of the symptoms….but the symptoms for PCOS include all of the ones you listed including insulin resistance, hair growth, etc….  My mother had the same symptoms as did her Grandmother for certain. 

There are many ways to deal with PCOS including as Maz stated birth control pills (to deal with one of the symptoms of irregular periods) but one can also take prometrium/provera to bring on periods.  Also metformin (a diabetes drug) is used to regulate periods.  Finally simple dietary and exercise changes can help many…including…gluten avoidance (imagine that).  Google it and you'll see more info on PCOS than you ever wanted to know.

I can't tell if your diagnosis is from a doctor or something that you suspect from your research.  If it is from a doc, nothing lost in getting a second opinion, right?  If it is from your own research….please go see a doc with your concerns.  You might be wrong. 

If it is PCOS….
Interestingly, I went to see the best Reproductive Endocrinologist I could find and he told me that he believes that PCOS is autoimmune in nature and that someday the medical community will find that out and treat it accordingly.  Unfortunately short of dealing with the symptoms with more meds he had nothing for me.  I'm trying a gluten free diet (argh).  Anyhow, in the medical community PCOS is not considered a disease but a “syndrome” or rather the way that we are wired.  I can tell you this, when I followed an Atkins type diet years ago all my symptoms went away…too bad the Atkins diet made me violently ill otherwise.  It's all a balance I guess….

I will pray for you.  Please keep us posted.

— whaleharbor

Thank you whaleharbor for the reply.  I'm going to look into the PCOS thing.  I guess with my added Japanese ancestry, paresthesias/peripheral weakness, proteinuria, they're suspecting POEMS.  But I guess it's so rare that most physicians have never diganosed it, let alone seen a patient with one.  Geez.  Thanks again for the info and I'll keep you updated, Anne

[Kim]

Thanks for posting back, Annie.  I am so sorry that you haven't been able to get a break in this filthy disease.  You sound so worn out and I just wish we had better answers for you. 

Beaming you positive thoughts that you find the strength to sort through all you're dealing with.

Hugs…….kim

[richie]

Hi

The numbness and tingling is common in SD due to the Raynauds factor –skin darkening also is common in SD –I had both –as to the other synptoms no –but protein in urine should be checked further to determine overall kidney function as Sd can seriously affect kidneys-

richie

[ideamktg]

[user=16]richie[/user] wrote:

Hi

The numbness and tingling is common in SD due to the Raynauds factor –skin darkening also is common in SD –I had both –as to the other synptoms no –but protein in urine should be checked further to determine overall kidney function as Sd can seriously affect kidneys-

richie

Mr Richie!  Thank you for the reply.  I'll definitely followup on the kidney issue, Anne

[Tiff]

[user=1566]annie_hawaii[/user] wrote:

Wow, it's been so long since I've posted.  In 2007 this website saved my life when I developed systemic sclerosis.  But after seeing numerous physicians and countless tests, I think I may also have something called POEMS sydrome, a rare form of multiple myelmia, which is a type of leukemia.  How can this be?  To have something as rare as systemic sclero was bad enough, but then to also have something even more rare is a curse. 

Please help me with this informal poll.  For all those with sclero, did you also develop any of the following:  insulin resistence (diabetes), hypercholestrol, darkened skin, lots of coarse, hair growth on your body, protein in your urine?  And most importantly, numbing/tingling in arms/legs, clumsiness?  Please respond… Annie

Hi Annie,

I don't have any answers for you, but I do want to tell you that you are not alone.  I had a very, very rare skin cancer as a child, then thyroid cancer (also not a common cancer), and autoimmune thyroid disease as and adult, and then a couple years later the RA hit in the rare form of PR.  Being rare seems to be up my alley, too.  The cancers were not aggressive forms, but I am looking at probably having to add an immune suppression drug, so my risks will go up.  I find it hard to imagine that another cancer dx is not in my future, probably not as mild.  It seem unfair to be hit with such an odd mix of things, especially as this stuff is far from rampant in my family.  I feel like the repository of all the cr*p genes or something.  Wish that were true though, so I could feel like none of this would every affect my children!

You are in my thoughts and I hope that you have good news soon!  Do get whatever help you need, please.   Don't go it alone!

[ideamktg]

[user=45]Tiff[/user] wrote:

[user=1566]annie_hawaii[/user] wrote:

Wow, it's been so long since I've posted.  In 2007 this website saved my life when I developed systemic sclerosis.  But after seeing numerous physicians and countless tests, I think I may also have something called POEMS sydrome, a rare form of multiple myelmia, which is a type of leukemia.  How can this be?  To have something as rare as systemic sclero was bad enough, but then to also have something even more rare is a curse. 

Please help me with this informal poll.  For all those with sclero, did you also develop any of the following:  insulin resistence (diabetes), hypercholestrol, darkened skin, lots of coarse, hair growth on your body, protein in your urine?  And most importantly, numbing/tingling in arms/legs, clumsiness?  Please respond… Annie

Hi Annie,

I don't have any answers for you, but I do want to tell you that you are not alone.  I had a very, very rare skin cancer as a child, then thyroid cancer (also not a common cancer), and autoimmune thyroid disease as and adult, and then a couple years later the RA hit in the rare form of PR.  Being rare seems to be up my alley, too.  The cancers were not aggressive forms, but I am looking at probably having to add an immune suppression drug, so my risks will go up.  I find it hard to imagine that another cancer dx is not in my future, probably not as mild.  It seem unfair to be hit with such an odd mix of things, especially as this stuff is far from rampant in my family.  I feel like the repository of all the cr*p genes or something.  Wish that were true though, so I could feel like none of this would every affect my children!

You are in my thoughts and I hope that you have good news soon!  Do get whatever help you need, please.   Don't go it alone!

Thanks Tiff, you're sweet.  I feel a little better after going to church today.  I think I've been isolating myself lately; time to face the world again.  Thanks so much for your post… Ann

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