Author Topic: Confusion about Raynauds  (Read 711 times)

Livia

  • Newbie
  • *
  • Posts: 40
Confusion about Raynauds
« on: January 19, 2019, 12:51:42 PM »
hey y'all...happy new year


 So I'm a little confused about Raynauds...I've just been told by a neurologist that Raynauds is a definite rheumatologic disorder and that it does not appear in neurologic diseases. He simply stated that it has nothing to do with neurologic disorders/diseases  :o ....Now I do find that hard to believe cuz I've always thought it would appear in neuro diseases, like MS & stuff...Anyone has any insights on this??

Also so I've been suffering from something similar to Raynauds but I dont know for sure if it is or not...Some of my toes do turn white in cold temperatures, but not symmetrical...then they turn slightly red or they just go back to normal...it doesn't really happen with my fingers only a few times & it was very mild..is this still Raynauds?? How do I get a diagnosis for it?

thanks

Carolina

  • Hero Member
  • *****
  • Posts: 5729
  • —if it ain't one thing, it's another." Roseanne R.
Re: Confusion about Raynauds
« Reply #1 on: January 20, 2019, 05:44:44 AM »
Hi, I did some research. 

In Summary:  1.  Raynaud's Phenomenon is mostly of no known origin (idiopathic), 2.  sometimes appears early in those with connective tissue diseases, 3.  occurs mostly in women, 4.  can be correlated with hormone replacement therapy of estrogen only, 5.  and has several effective treatments.


1.  QUOTE from article cited below:  "Although the vast majority of RP is primary (idiopathic, PRP), RP can be secondary to a number of different conditions, including connective tissue disease.1 Importantly, RP is the most common presenting feature of systemic sclerosis (SSc) and can precede its diagnosis by many years."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5700788/

Here is a list of  connective tissue diseases:

https://rarediseases.info.nih.gov/diseases/diseases-by-category/27/connective-tissue-diseases

Here is a list of mixed connective tissue disease:

https://rarediseases.info.nih.gov/diseases/7051/mixed-connective-tissue-disease

And here is more than you EVER wanted to know about Raynaud's Phenomenon:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5110514/

Two take away points, buried deep in the article:

1.  RS is correlated to treatment of post menopausal women with estrogen only.  Estrogen plus progesterone, not so much correlation, no estrogen, not so much correlation. 

2.  Far down in this highly scientific article is this chart:

A summary of the traditional and non-traditional therapies, as well as some surgical interventions.

Table 1
Various lines of treatment of Raynaud’s disease.


Treatment                           Effectiveness   
Traditional treatment   
Calcium channel blockers   Effective;       first-line of treatment   
PTK inhibitors                           Efficient   
PDE5 inhibitors                   Inefficient   
Beta-blockers                           Controversial   
Statins                                   Emerging/powerful   
Prostacyclins                           Efficient   
ACE inhibitors                           Variable effect
Endothelin receptor antagonists   Variable effect   
Serotonin receptor antagonists   Effective   

Non-Traditional treatment   
Botulinum toxin type A   Efficient   
Chinese herb                   Ineffective   
Ginkgo biloba                   Ineffective   
Acupuncture                   Efficient   
Laser therapy                   Efficient   

Surgery   
Thoracic sympathectomy   Effective   
Hand stripping                           Effective   
Nerve stimulation                   effective   
Fat grafting                           Encouraging results


Regards, Elaine   
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

Linda196

  • Administrator
  • Hero Member
  • *****
  • Posts: 5058
Re: Confusion about Raynauds
« Reply #2 on: January 20, 2019, 06:10:02 AM »
There is a lot of misconception and disagreement about MS being neurological or rheumatological, at least as far as rheumatological includes autoimmune. The growing consensus is that MS is a neurological manifestation of an autoimmune disease. As such it is treated by neurologists, and pretty much avoided by rheumatologists. While it isn't considered a connective tissue disorder, it is immune mediated.

True neurological diseases have more defined causes, like prion disease, brain tumors, epilepsy, Parkinson's disease and stroke.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

Livia

  • Newbie
  • *
  • Posts: 40
Re: Confusion about Raynauds
« Reply #3 on: January 20, 2019, 09:41:26 AM »
Hi, I did some research. 

In Summary:  1.  Raynaud's Phenomenon is mostly of no known origin (idiopathic), 2.  sometimes appears early in those with connective tissue diseases, 3.  occurs mostly in women, 4.  can be correlated with hormone replacement therapy of estrogen only, 5.  and has several effective treatments.


1.  QUOTE from article cited below:  "Although the vast majority of RP is primary (idiopathic, PRP), RP can be secondary to a number of different conditions, including connective tissue disease.1 Importantly, RP is the most common presenting feature of systemic sclerosis (SSc) and can precede its diagnosis by many years."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5700788/

Here is a list of  connective tissue diseases:

https://rarediseases.info.nih.gov/diseases/diseases-by-category/27/connective-tissue-diseases

Here is a list of mixed connective tissue disease:

https://rarediseases.info.nih.gov/diseases/7051/mixed-connective-tissue-disease

And here is more than you EVER wanted to know about Raynaud's Phenomenon:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5110514/

Two take away points, buried deep in the article:

1.  RS is correlated to treatment of post menopausal women with estrogen only.  Estrogen plus progesterone, not so much correlation, no estrogen, not so much correlation. 

2.  Far down in this highly scientific article is this chart:

A summary of the traditional and non-traditional therapies, as well as some surgical interventions.

Table 1
Various lines of treatment of Raynaud’s disease.


Treatment                           Effectiveness   
Traditional treatment   
Calcium channel blockers   Effective;       first-line of treatment   
PTK inhibitors                           Efficient   
PDE5 inhibitors                   Inefficient   
Beta-blockers                           Controversial   
Statins                                   Emerging/powerful   
Prostacyclins                           Efficient   
ACE inhibitors                           Variable effect
Endothelin receptor antagonists   Variable effect   
Serotonin receptor antagonists   Effective   

Non-Traditional treatment   
Botulinum toxin type A   Efficient   
Chinese herb                   Ineffective   
Ginkgo biloba                   Ineffective   
Acupuncture                   Efficient   
Laser therapy                   Efficient   

Surgery   
Thoracic sympathectomy   Effective   
Hand stripping                           Effective   
Nerve stimulation                   effective   
Fat grafting                           Encouraging results


Regards, Elaine


thanks for ur feedback and those articles. I will definitely take a closer look at the RP article. So u mentioned something I hadn't known before, which is that RP can appear early in connective tissue diseases...I wasn't expecting to read that

Livia

  • Newbie
  • *
  • Posts: 40
Re: Confusion about Raynauds
« Reply #4 on: January 20, 2019, 09:43:16 AM »
Hi, I did some research. 

In Summary:  1.  Raynaud's Phenomenon is mostly of no known origin (idiopathic), 2.  sometimes appears early in those with connective tissue diseases, 3.  occurs mostly in women, 4.  can be correlated with hormone replacement therapy of estrogen only, 5.  and has several effective treatments.



Regards, Elaine


so it can precede lupus or sjogrens before they attack...didn't know that at all...I wonder if it can precede years or few months...its good info...many thanks

Livia

  • Newbie
  • *
  • Posts: 40
Re: Confusion about Raynauds
« Reply #5 on: January 20, 2019, 09:45:06 AM »
There is a lot of misconception and disagreement about MS being neurological or rheumatological, at least as far as rheumatological includes autoimmune. The growing consensus is that MS is a neurological manifestation of an autoimmune disease. As such it is treated by neurologists, and pretty much avoided by rheumatologists. While it isn't considered a connective tissue disorder, it is immune mediated.

True neurological diseases have more defined causes, like prion disease, brain tumors, epilepsy, Parkinson's disease and stroke.


so MS can be rheumatologic?? i didn't know it was a neurologic manifestation.... so that means it probably can accompany many of autoimmune diseases...

Livia

  • Newbie
  • *
  • Posts: 40
Re: Confusion about Raynauds
« Reply #6 on: January 20, 2019, 09:54:30 AM »
I do wonder if RP itself can be a manifestation of MS? I've tried to research this online but didn't really get any definite answers. Most of the stuff concerning RP revolves around connective tissue/rheumatologic diseases..

if anyone has any insight or first-hand knowledge on this, pls share...

thanks

Tharrell

  • Hero Member
  • *****
  • Posts: 804
  • There has to be humor in this somewhere!
Re: Confusion about Raynauds
« Reply #7 on: January 20, 2019, 11:24:26 AM »
My raynauds came several years before I was diagnosed with mixed connective tissue disease in addition to sjogren’s. My raynauds also does not follow your typical white, red blue pattern yet my rheumatologist said I have it. With me my whole hands are involved. My hands, on a normal day look like I have red spots all over my hands. If you look up pictures of hands with liver disease- that’s what my hands look like, escept I have no liver disease. When my hands get cold and I warm them up, those red spots turn in to a lovely shad of dark blue. I’m a leopard whose spots changes colors! I do have a few spots on my fingers that turn white. So apparently there are different representations of raynauds. Raynauds is purely a blood flow problem, hence not neurological, which is nerves.
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,IVIG, sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,ranitidine

Livia

  • Newbie
  • *
  • Posts: 40
Re: Confusion about Raynauds
« Reply #8 on: January 20, 2019, 07:26:48 PM »
My raynauds came several years before I was diagnosed with mixed connective tissue disease in addition to sjogren’s. My raynauds also does not follow your typical white, red blue pattern yet my rheumatologist said I have it. With me my whole hands are involved. My hands, on a normal day look like I have red spots all over my hands. If you look up pictures of hands with liver disease- that’s what my hands look like, escept I have no liver disease. When my hands get cold and I warm them up, those red spots turn in to a lovely shad of dark blue. I’m a leopard whose spots changes colors! I do have a few spots on my fingers that turn white. So apparently there are different representations of raynauds. Raynauds is purely a blood flow problem, hence not neurological, which is nerves.


thanks for sharing ur experience..yes ur condition does sound very strange..not what I would expect of RP...why i always thought of it as neurological is because it involves the peripheral nerves...i assumed it would appear in ppl with peripheral neuropathy & stuff

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13332
Re: Confusion about Raynauds
« Reply #9 on: January 20, 2019, 09:49:19 PM »
I think that Reynauds can come at anytime. It sounds like it is weird and does it own thing. I have had Sjogrens, Myasthenia gravis and Hashimotos for may, many years and I have developed a case of Reynauds that is undiagnosed. I am an old nurse and know the symptoms and I have sure developed the strange issues. I don't think it is a severe case but that may be because I have been on Intravenous gamma globulin for 12+ years plus prednisone and Plaquenil. When it comes to autoimmune and some of these tagalong health problems it seems that anything goes. Irish

Livia

  • Newbie
  • *
  • Posts: 40
Re: Confusion about Raynauds
« Reply #10 on: January 21, 2019, 05:48:42 PM »
I think that Reynauds can come at anytime. It sounds like it is weird and does it own thing. I have had Sjogrens, Myasthenia gravis and Hashimotos for may, many years and I have developed a case of Reynauds that is undiagnosed. I am an old nurse and know the symptoms and I have sure developed the strange issues. I don't think it is a severe case but that may be because I have been on Intravenous gamma globulin for 12+ years plus prednisone and Plaquenil. When it comes to autoimmune and some of these tagalong health problems it seems that anything goes. Irish


Thanks for ur input...so did ur raynauds start long before u got sjogrens?

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13332
Re: Confusion about Raynauds
« Reply #11 on: January 21, 2019, 05:58:16 PM »
No, my symptoms came after my sjogrens and other autoimmune diseases. There is no cut and dried way that the Raynauds is going to present itself. It comes when it comes. A lot of our issues are inexplainable and it can drive us crazy to try and prove things one way or another. Good luck. Irish

Nomad

  • Sr. Member
  • ****
  • Posts: 385
Re: Confusion about Raynauds
« Reply #12 on: January 21, 2019, 09:28:14 PM »
My rheumatologist always was interested in my RS. Never any other doctor.

Can a blood clot cause Raynauds?
SLE, Sj.  Syndrome, IC, Atypical Trigeminal Neuralgia, ITP (low platelets)... Various meds and lots of vitamins. Trying to eat healthy; seems to help a little.

Linda196

  • Administrator
  • Hero Member
  • *****
  • Posts: 5058
Re: Confusion about Raynauds
« Reply #13 on: January 22, 2019, 02:31:00 AM »
A blood clot can cause the same appearance as Reynaud's, but either isolated to one digit, or involving one limb completely, and with no discernible pulse in that area.

This is called claudication and requires medical intervention quickly
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld