MS & RA

[mommyHeidi]

Does anyone have it?

Ok so I have been having a Lot of pain in my big toe joint, my knees, my hips and my finger joints. This is all new and I have *had MS for 6.5 years. The reason I am thinking RA is because my mom has RA and my pain is exactly how hers started.

I am scared to death to just go get the blood test done, how can I have another thing thrown at me.... Plus my mom would feel just awful (she already feels awful that I have MS, yes I am 33 but I am her baby)

I guess I am wondering if anyone has both MS and RA and how you are coping with both of them. I see my mom and her discomforts and her trials so I would love to hear how you are dealing with BOTH

Thank You

[Myoak]

Some people talk about successful RA treatment with LDN (low dose naltrexone). There is a discussion group:
http://health.groups.yahoo.com/group...osenaltrexone/

Of course, many MSers use LDN whether they have RA or not. Since LDN is very inexpensive and has no significant side effects (no serious adverse event reported in adult or child using LDN) it may be worth considering.

Not everyone’s cup of tea but you can learn more about it by checking out the LDN thread here at MS World or by googling LDN. There are a number of MSers who use LDN concurrent with their MS med who have posted about it the low dose naltrexone yahoo board: http://health.groups.yahoo.com/group/lowdosenaltrexone/
I’m not sure the links will be allowed but if not just go to yahoo boards and enter RA and LDN or low dose naltrexone in the search box.

Most people are comfortable with trying something safe which doesn’t cost much before taking something which is expensive and has lousy side effects. Unfortunately, your doctor will know a little about naltrexone but nothing about LDN.

LDN is ignored by doctors but not by patients. The yahoo low dose naltrexone group has over 10,000 members. You can learn about it there. Comparatively, you will learn nothing about it from your doctor. Their standard reply, “We don’t know much about it”. True. They didn’t study LDN in med school, they have no drug reps parading in presenting a cheap generic drug, the reps are busy selling expensive meds their company has patents on.

Patients have to look into this one on their own. But there are a tremendous number doing just that and providing a great deal on personal use and testimony especially at the yahoo low dose naltrexone board. There are some users here at MS World, also. Hopefully we will hear from someone if they use LDN for both RA and MS.

Really odd that LDN proved tremendously effective in PPMS in a human pilot trial published in 2008 http://www.ncbi.nlm.nih.gov/pubmed/18728058 but there has been no interest from the pharmaceuticals, non-profits, or government for a large Phase 3 trial to provide more evidence of value in MS.

Simply incomprehensible that a safe, inexpensive med is ignored while expensive meds with frequently horrible side effects are used. IMHO, it borders on abhorrent sin that LDN is not routinely offered to PPMSers who are normally sent home w/o any choice whatsoever.

Well, it's incomprehensible until you consider the difference between LDN, a generic costing $35 a month and patented MS meds costing $4500 to $5000 per month as is the case with Tecfidera, Tysabri, and Gilenya. Little money = little interest in the medical world.

No sense crying about it; it isn't going to change. But you can check out people using LDN and their personal testimonies about it. And, if desired, it is entirely possible to get a prescription, use LDN and form your own opinion as thousands have.

[MSMOBILITYMAN]

THANKS 4 UR WEB LINK INFO

I JOINED THAT YAHOO HEALTH GROUP YESTERDAY
AND I WILL ASK MY PCP TO WRITE ME A SCRIPT FOR THAT LD?

[babymonkey]

My Mother has severe RA and I am afraid that I might be in the early stages of developing it myself.
Tell ya what, if you have the blood test, so will I. Deal?

Hugs & Prayers,
Marci

[Beema]

I have MS and RA along with some other conditions too. I don't think its that unusual to have both according to my drs. Its hard as they each play off each other and is at times hard to know what is causing what. I just do the best I can each day. I have a lot of pain and so far haven't been able to find much to help that as there are so many meds I can't take.

They started me out on plaquinel for RA but I just couldn't tolerate that at all. Right now working on figuring out what will work together with my MS meds.
Get the blood work done. You may find that you don't have RA at all and maybe another arthritis type thing. Its better to know what you are dealing with.

Good luck!

[mommyHeidi]

My Mother has severe RA and I am afraid that I might be in the early stages of developing it myself.
Tell ya what, if you have the blood test, so will I. Deal?

Hugs & Prayers,
Marci

Well I talked to my Neurologist and he said my pain is not MS related (well he said he is 98% sure it isn't because MS is such a mystery to us all) so he wants me to see a rheumatologist (shocking).........

Now I have to wait till September 10th to see him, I am calling everyday to see if they have cancelations . I have to WAIT and I am in pain. It sucks.... And I can't stay off the dang Internet looking crap up, never a good thing!!!! I am wondering if it is other things now, gosh it could be other things, MS and other autos mimic so many

Heidi

[babymonkey]

Well I talked to my Neurologist and he said my pain is not MS related (well he said he is 98% sure it isn't because MS is such a mystery to us all) so he wants me to see a rheumatologist (shocking).........

Now I have to wait till September 10th to see him, I am calling everyday to see if they have cancelations . I have to WAIT and I am in pain. It sucks.... And I can't stay off the dang Internet looking crap up, never a good thing!!!! I am wondering if it is other things now, gosh it could be other things, MS and other autos mimic so many

Heidi

Heidi,

Bless your heart. I feel for you girl! I would be calling everyday as well and praying for someone to have cancelled.

I have also been known to just show up at a new specialist office when my appt was too long of a wait for me. When I would sign in and they call me up there and tell me my appt is not until whatever date. I just reply with 'Well that is not what I was told'. The receptionist looks at me frustratedly but gets up and comes back and says well the doctor says he will see you , but it might be quite a wait.

I admit I have done that twice. It worked both times and yes, I would do it again, lol. If the rheumatologist office is not too you might want to try it.

About our franticic internet searches, lol. In my opinion, sometimes its our only way to keep use busy even though it does freak us out most of the time but we have to do what we have to do. If we don't do it we would stress out and stress is not good for us either.

I will be praying for you and wishing your pain away!!

,
Marci

[mommyHeidi]

Well I got moved up 2 weeks and that is better tan nothing right... As far as my pain not good. It is a cold and damp day in Chicago.... I AM diggin the cooler temps but not the rain (although my munchkins are all about a movie day today)

So now my Apt. Is Aug 22 and my pain is in every join, my elbows and knees are killing me. Hips hurt so bad at night I can't sleep! Come on 8/22!

Hope you all are doing well

(Marci they either got really sick of me calling or they truly had someone cancel lol)

[mersea33]

Similar symptoms- DX Polymyalgia Rheumatica

Hi,
Read your posts and can certainly relate. What MS drug are you one?
I've been on Gilenya for 1.5 years and was DX'd in March with Polymyalgia Rheumatica. I went to my Neuro with horrible, aching, constant pain in my legs, neck, hips, arms which started abruptly over a two week period. He sent me to a Rheumatologist- did all the Lab work and hence the DX. I thought I had RA or Fibromyalgia. Although my Neuro does not agree, I am wondering if it is a side effect of the Gilenya, but can't find much supporting evidence.

I'm now on 10mg of Predinsone a day - PMR will go away but it can take years with decreasing dose of Prednisone over time.
Bottom line, it's good to see the Rheumatologist to find out what it is.
I've decided to do my own little experiment and discontinue the Gilenya for a while to see it the PMR goes away.....
Best of luck and let us know what comes of your DR. visit...
Mersea33

[mommyHeidi]

Well.....

I finally went to my appointment and had my blood taken (and tons of it) and got the results, after months of pain and waiting I am now (on top of my MS) having to battle RA.....

[lovetherams]

Just wanted to say sorry to hear this

I finally went to my appointment and had my blood taken (and tons of it) and got the results, after months of pain and waiting I am now (on top of my MS) having to battle RA.....

I found this post when I was looking up achy leg pain. I have right side weakness from the MS but have recently developed a new and different achiness that reminds me of arthritis in my legs. My grandma on my Mom's side has RA and my aunt on my dad's side has RA as well. I only use LDN to treat my MS and Baclofen on occasion to treat my spasticity. So I do not believe the achiness and stiffness is medication related since LDN is also used to treat RA symptoms.

At any rate, I just wanted to say I am sorry to hear you now have to deal with RA on top of the MS. I will keep you in my Prayers. Hang in there!