New diagnosis, that i didn't want to hear!

[Diane4145]

No one would want to hear this, I surely didn't! After years of dealing with aggravating health issues, that Dr's couldn't diagnose, I just found out, that I have Rheumatoid Arthritis. From what I already knew about it, there is no cure and it can be severely debilitating, sometimes deforming. I'm just thankful to FINALLY be getting somewhere and some answers! Thank goodness, I'm a proactive patient!

I don't have anyone in my family that has/had it, that I'm aware of, at least. I'll be seeing a Rheumatologist and doing a lot of research! I realize that this is probably toooo much information....I've always been kinda, open book! I mention this to see if anyone knows of someone dealing with this, since, I've only found one person and her mother has RA. If you have any info, suggestions, etc... I'd love to hear from you!

Thank you!
Diane

 

[Rudyjohn]

No one would want to hear this, I surely didn't! After years of dealing with aggravating health issues, that Dr's couldn't diagnose, I just found out, that I have Rheumatoid Arthritis. From what I already knew about it, there is no cure and it can be severely debilitating, sometimes deforming. I'm just thankful to FINALLY be getting somewhere and some answers! Thank goodness, I'm a proactive patient!

I don't have anyone in my family that has/had it, that I'm aware of, at least. I'll be seeing a Rheumatologist and doing a lot of research! I realize that this is probably toooo much information....I've always been kinda, open book! I mention this to see if anyone knows of someone dealing with this, since, I've only found one person and her mother has RA. If you have any info, suggestions, etc... I'd love to hear from you!

Thank you!
Diane

I have arthritis too, but a different type. I think there are a couple of hundred types.

I take methotrexate once a week (an oral form of chemotherapy). This is after years of trying different meds. There are different meds for different symptoms.

You will become very good friends with your rheumatologist. A healthy diet, & consistent exercise is key. Also, stress reduction helps if possible. Good luck to you. Finding a diagnosis is half of it. Don't dwell on the "no cure" part.

 

[Miss Critter]

Diane, try a gluten-free diet for a few weeks and see if it has any effect on your symptoms. Gluten and other food allergies/sensitivities can trigger auto-immune disorders, as can Lyme disease. You can find tons of information on both on the net.

 

[Susan Horn]

An alkalizing diet may also be helpful, lots of free info for the googling of it, and more detail in several books youcan order. Proper hydration is critical, especially if you're taking pharmaceuticals or not doing the alkaline/gluten-free thing. My favorite drops to add to water or juice for improved hydration (sort of like a super-healthy sugar/chemical-free gatorade without the nasty flavor) is Ambaya Gold. I order it online. First time I tried it I could tell a difference overnight in how my skin felt to the touch, looked and felt in terms of comfort (reduced the itching greatly in peak of allergy season).


I would encourage you to look for a doc who does functional medicine for more specific guidelines for you. No, I don't know of anyone in the area doing FM, my FM doc is in Virginia; but there may well be somebody here offering that holistic approach around here.

 

[Diane4145]

Thx, guys!

Thank you for the response, Johnrudy! The fact that there is no cure, is a mute point to me, too! I'm looking forward to seeing the Rheumy next week in Pensacola, just wished that I had a good one, nearby!

I have arthritis too, but a different type. I think there are a couple of hundred types.

I take methotrexate once a week (an oral form of chemotherapy). This is after years of trying different meds. There are different meds for different symptoms.

You will become very good friends with your rheumatologist. A healthy diet, & consistent exercise is key. Also, stress reduction helps if possible. Good luck to you. Finding a diagnosis is half of it. Don't dwell on the "no cure" part.

Thank you, MissCritter and I just had blood work done, testing for Gluten.

MissCritter Diane, try a gluten-free diet for a few weeks and see if it has any effect on your symptoms. Gluten and other food allergies/sensitivities can trigger auto-immune disorders, as can Lyme disease. You can find tons of information on both on the net.

Great info, Susan! I have also been given the name of someone, that's in to Natural/Holistic therapies. His name is John Perrotta and he's in Destin. I hear that he's cured many people, from breast cancer! At this point, I'm investigating ALL of my options! If you're not a proactive patient, you're in for a difficult ride! I am and have fired numerous physicians, when necessary! If you know they're missing something and you're not getting answers...move on people! It's your health and life!

Susan Horn An alkalizing diet may also be helpful, lots of free info for the googling of it, and more detail in several books youcan order. Proper hydration is critical, especially if you're taking pharmaceuticals or not doing the alkaline/gluten-free thing. My favorite drops to add to water or juice for improved hydration (sort of like a super-healthy sugar/chemical-free gatorade without the nasty flavor) is Ambaya Gold. I order it online. First time I tried it I could tell a difference overnight in how my skin felt to the touch, looked and felt in terms of comfort (reduced the itching greatly in peak of allergy season).


I would encourage you to look for a doc who does functional medicine for more specific guidelines for you. No, I don't know of anyone in the area doing FM, my FM doc is in Virginia; but there may well be somebody here offering that holistic approach around here

 

[Diane4145]

After researching, I've also learned this!

Based on my symptoms, I'm thinking that Rheumatoid Vasculitis, may be a factor. Anyone able to comment, on that? In fact, I have most of those symptoms! Though, I don't have weight lose, but, weight gain from swelling. It's sooo frustrating when you've been complaining to Dr's for years and you feel that you're having to diagnose, yourself!Anyone able to comment, on that?

Thx,
Diane

 

[Minnie]

I would first off write down all the questions you have for your specialist. I would not read too much on the Internet until you meet with them.

I wish you the very best, my father had it.

 

[jamie]

My mother has RA & I am tested each year to make sure that my numbers are still in normal range. My mother's rheumatologist is in P'cola, too. From everything I have read, in trying to keep the disease at bay, the best diet is vegetarian or better yet vegan. Also, staying away from the "whites"--flour, sugar, rice & potatoes. It helps that my husband is vegan & I'm pescatarian & that we eat all whole grains & "non-white" at home. But I still worry about getting RA due to genetics. My mother does not try to control her's with diet; she takes all sorts of medicine. She did the gold shots in the 80's, now she takes methotrexate weekly, too, along with many others. I wish you well & hope that you can find a doctor that is willing to take a holistic approach when possible. Sadly, anytime my mother asks her doctor about a supplement I suggest her doctor tells her she should not take it...he's all about the pharmaceuticals.

 

[Rudyjohn]

My mother has RA & I am tested each year to make sure that my numbers are still in normal range. My mother's rheumatologist is in P'cola, too. From everything I have read, in trying to keep the disease at bay, the best diet is vegetarian or better yet vegan. Also, staying away from the "whites"--flour, sugar, rice & potatoes. It helps that my husband is vegan & I'm pescatarian & that we eat all whole grains & "non-white" at home. But I still worry about getting RA due to genetics. My mother does not try to control her's with diet; she takes all sorts of medicine. She did the gold shots in the 80's, now she takes methotrexate weekly, too, along with many others. I wish you well & hope that you can find a doctor that is willing to take a holistic approach when possible. Sadly, anytime my mother asks her doctor about a supplement I suggest her doctor tells her she should not take it...he's all about the pharmaceuticals.

That's too bad. My rheum. (in chicago) does approve of alternative treatments in conjunction with the methotrexate. I don't think i could function w/o it. Monthly checkups and blood work is mandatory.

 

[Mango]

Based on my symptoms, I'm thinking that Rheumatoid Vasculitis, may be a factor. Anyone able to comment, on that? In fact, I have most of those symptoms! Though, I don't have weight lose, but, weight gain from swelling. It's sooo frustrating when you've been complaining to Dr's for years and you feel that you're having to diagnose, yourself!Anyone able to comment, on that?

Thx,
Diane

I know the feeling. I went to 21 doctors ranging from the Mayo Clinic to Columbia Hospital to eventually find out that I had what I suspected, Lyme Disease.

However, get past that and continue your research. I would like to add that I have met many people who have been misdiagnosed with RA and other autoimmune diseases when they really had Lyme Disease, myself included. This was just by conjecture and one elevated lab, which really had nothing to do with lupus or any disease. Many of the Physicians in the South do not know the best labs to send bloods to and do not know how to interpret the results. You may want to ask them to send your blood to Ingenex Labs or Stoney Brook in New York. You also comment quite a bit and follow the animal stories and rescues on Sowal, so I am assuming you have close contact with at least one or many. Many cases of Lyme are brought by ticks that hitchhiked in to their owners.

If it is RA, my husband was diagnosed with it years ago; although I do not believe that is the issue since we live in a Lyme endemic area. He has not had to resort to anything more than ibuprofen when needed, so with proper diet and living as stress free a life as possible, one can do the best they can do to keep the disease from advancing.

Lastly, read, read and read. Join a yahoo group for RA or any other web based group. There are many different theories, like using minocycline - which has brought relief to some people -- because some believe RA may be an infection. Some doctors are using Low dose Naltrexone. (google it- found to be very safe). There are supplements, like Boron, that many people with RA are deficient in, and under the care of a Physician monitoring these things, can make a big difference in how you feel. I was dangerously deficient in D, Vitamin B12, and magnesium; to name a few, because tick borne infections use them to replicate. Addressing those issues helped quite a bit and I am still addressing them under the care of a physician.