Now that I'm working half time I am using the days off to get evaluated and do PT. I went to an amazing hand clinic through Dominican Hospital where they fitted me with various splints and taught me protective ways to save my joints. I have nerve damage in my right hand from the RA and it's affecting almost everything I do: art, signing, driving, typing, etc. I'm really scared that my hands are going to be permantly disabled.
I am also seeing a neurologist because of weakness in my legs and numbness in my hands. I'm scared that I might have MS in addition to already existing RA,OA,fibro, and Sjogrens. I have to pee all the time and never seem to be able to empty my bladder. I have many of the other symptoms like visual problems, hearing loss, trouble with word recall off and on. I am extremly stiff all over and have lost the ability to twist or bend my back or raise my legs any distance.My legs give out and shake when I get tired. Anyone out there have both RA and MS?
We have a friend through 4RATalk named Bruim that has both and has had a very difficult time. You might look for him there and send him a PM.
He's not on there as much as he use to be because I think he probable spends more time on a MS site considering he's trying to accept the dx.
He's really sweet and I imagine he'd welcome the opprotunity to share some of his experience.
Good Luck Sweetie. I pray you won't have MS; but you are a strong Lady. You can do it. Don't give up. We can't always control the circumstances that come our way....all we can control is our reaction to them. Try to stay positive.
I'll keep you in my prayers.
Linda, I'm sorry to hear that it is getting worse and more bleak. You really should talk to Bruin. He has the most amazing attitude for someone with so many problems. Plus, he is a wealth of information.
It is possible to have both. But what happens is that MS can present with RA symptoms. There is overlap. Until they do all the tests, you are not going to know. And, they can't treat you effectively until then either.
It may be time to consider how much of your life can you salvage. You may have to think about quitting work and just filling your life with things that you enjoy doing.
It scares me about your hands, your eyes and your hearing. The combination is intolerable. I know you have struggled so hard and taken every avenue to help yourself keep working.
But what if you could consider just taking care of you from now on?Doing artwork for yourself. I know that you feel it slipping away. Hang on to the best parts, your joys.
My heart is with you.
Hi Deanna + Lovie, I don't know for sure and the doctors haven't mentioned MS but I know from research that I have some of the symptoms. I don't intend to give up. I'm painting tomorrow. I have two children's books with an editor and I don't intend to tell her about my health issues. The teaching job is very intense but better than my full time one. I can quit if I need to. If I do, I 'll try to go on disability retirement. It is stressful though, not knowing. Thank you for the contact of Bruim. I'll try to reach him on 4ra talk. I'm not very good on getting websites, but I'll try. Thanks for the support.Hi, Linda. I haven't been here for awhile, so didn't see your post till just now. I have MS - diagnosed about six years ago. Then two years ago I was diagnosed with RA. Maybe I can help you feel less panicked about all of this. First I want to tell you that it's not the end of your world. Neither is life threatening, and there is medication available for both. I now live a pretty normal and full life, and I don't let either of these nasty little diseases get in my way. The trick will be getting definite diagnoses. What can I help you with? Ask away!!
Linda,MPat, Terry --
As I said earlier, I have both MS and RA. I was diagnosed with "definite" MS about 6 years ago. This was the result of first an MRI, then Evoked Potential tests, and finally a lumbar puncture (spinal tap.) All three are necessary for what they call "definite diagnosis." Other diagnoses could be "possible" and "probable" if one of the tests are inconclusive. Also required is a prior incidence of symptoms within the preceding 4 years--not just one incident. Anyway, I'm concerned that you feel that you cannot take biologics. My rheumy was aware of the connection between TNF blockers and MS, so he did not prescribe them. But there is a biologic that is not a TNF blocker, called Kineret. He did extensive research, and worked with my neurologist. They determined that Kineret does not cause MS, and therefore, I take it, with great results. I also take Copaxone for the MS. I urge you to look into Kineret and discuss it with your doctors. I'm presently looking into Orencia as well, because frankly, I'm tired of giving myself two shots a day. Orencia is not a TNF blocker, so it's useable for us. I have had no exacerbations of the MS since starting the Copaxone, and the RA flares went from a 10 to a 1 or 2 on a 10-point scale. I'm completely off prednisone. I don't know why Kineret is not as well known as the other biologics. Terry--are you still on Orencia? How is it working?
Linda--I hope you will insist on both a head MRI and a neck MRI. I had little or no MS lesions in my head, and had to argue with my first neurologist to do a neck MRI. He refused because he said I was too old to have MS. (What an idiot!) So I fired him, and found a neurologist who knew what he was doing. Sure enough, the neck MRI showed all my lesions, and explained my symptoms, which were mostly numbness in my extremities, and one incident of drop-foot which is a pretty awful thing--but it only lasted about six weeks, then disappeared.
OK--I think I've babbled long enough...
Sara, I had my second MRI today and got to look at the films. The disk and report are not done yet. It shows my skull and from the neck all the wway down to my hips. Do you think that includes the head and neck area? Have my neurology appointment on Wednesday so hopefully I'll know more then.That sounds like a different sort of MRI--like a full body MRI or something. My MRIs were different. One of only my head, the other only of my neck. When I had my follow-up MRIs a couple years later, it was the same thing. A separate one for the head and one for the neck. (And lucky me, I was charged separately for each, by the way--not cheap.) If it helps, each session in the tube took about a half hour. Very loud in there. I think you should ask the doctor what the difference is. Tell him you've spoken to folks with MS, and they described theirs.
You know, your symptoms are unspecific and varied. I wonder if for that reason, he wanted a picture of your whole body to see if he could zero in on the problem(s). Maybe he's looking for everything--not just MS. In my case, they suspected MS, and were looking specifically for that; therefore, head and neck specifically.
What is your doctor's specialty--the one who ordered the MRI? Is he a neurologist?
Sorry I couldn't be more help. But please keep me informed on what you find out. I'll be looking for you.
Linda~I'll be anxious to hear what the doctor says on Wednesday. I've had simular symptoms myselt; but my RD hasn't gotten to the point where there's been any mention of MS....and I'm too scared to even mention it.
I had an MRI done on my left knee & shin area on Thursday myself for pain and numbness. Years ago I had some surgery and it's believed that I've got some nerve damage from that. Will the MRI show nerve damage? After it was over I asked the tech if he could see anything on the images. He said I don't see anything on the shin area; but your doctor will have to talk to you about your knee. No doubt it shows arthritis and I wouldn't be surprised if they say OA in that knee due to the old surgery.
I have had this strange tingle/numbness in my other leg. It's almost as if I get cold chills in just that one leg. No where else in my body will be doing it; just my leg. Is that fimiuar to anyone here? Is that a symptom anyone has? My doctor has lowered my mtx from 20 to 25 because he thinks maybe that's causing it. I would have thought the HUmira would have caused it before the MTX....but again; I didn't say anything. Just went along with what the doctor say. Any thoughts on that.
Good Luck Linda. I'll be watching for your results on Wednesday.
Hi, Lovie--
You asked if an MRI can show nerve damage. The MRI is not a very specific test for nerve damage. As I understand it, you might need a round of nerve conduction tests. That's where they attach all these wire things to the affected parts of your body, then send signals from that point to your brain, to see if there's some sort of disconnect. They do this test, for example, to test for carpal tunnel syndrome. But my nerve conduction tests were ordered by a neurologist. This is all part of the CNS, which is normally monitored by a neurologist, not a rheumy. Maybe you should ask the doctor about this idea. It's an interesting test, and strange. The signals they send make your limbs jump around when you're not expecting it. Sort of funny, really. And weird.
Now I'll be watching for your answer, as well as Linda's. just thought I would reply here as well. this week I had to go to my
opthomologist because I have came down with uveitis now. Very scary
,my eyes and head hurt, very red and it was in both. I do have RA but the
doc shot a letter off to the neuro right away. Did alot of reading and
apparenly uveitis is seen quite a bit in MS especially when it is bilateral.
yikes. I go back in two weeks. Meantime I am on steriod drops. When i go
back I will ask more questions as to if he thinks this is more RA related or
MS. He did say he wanted to do a field of vision test next time. This is not
what I needed with the nystagmus.
As for the Orencia I did not stay with it. It was like taking water and did
not notice a change at all so I said keep it and I am only on MTX right
now. I also found out that it was not preforming as well as they had
hoped and the rheumys were pretty upset. They were also seeing bad
reactions that were not reported in clinical trials. I had one friend of mine
end up in the ER and is now going through all kinds of testing . I also
know there was a patent enfriengment going on with the U of Michigan
and I hope that did not make them change the origional formual JMO. All
I know is the office where I go they are not having great success with it.
Good luck linda on the MRI my prayers are with you. Terry
Sara;
My RD said if he didn't see anything on the MRI that gave good reason for the numbess in my leg the next step was a nerologist. I was just hoping the MRI might show something so I wouldn't have to do all that. I'm getting tired of all the different doctors and the different test just to eventually add more meds to the mix.
I know it will probable have to be done.....but I'm not anxious to do it. He's mentioned it several times now so I imagine I won't have a choice much longer.
Tizzy~Welcome to AI!Lovie--
You're funny, because you seem so strong when you're giving your good advice to others, but when it comes to you, you're a big softy, aren't you? For what it's worth, I don't think it's MS for some reason. I'm wondering if it's partially the old surgery, and partly perhaps a circulatory issue. (I don't know how old you are, but sometimes after 40 or so, that becomes an issue.) I know MS is your fear. But you have no other symptoms except in your legs? Unusual in MS, but I suppose not impossible. And just so you know (coming from a person with MS) it's not life threatening, and you can deal with it. You're making yourself nuts worrying about it and trying to ignore it at the same time, aren't you? I'm a master of denial (I could teach a class) but sometimes it just doesn't work.
Tizzy--
You've given me huge food for thought regarding Orencia!! My regular app't is Friday, and I was ready to tell my rheumy to switch me over to it from Kineret, simply because giving myself two daily shots (one for the MS, one for the RA) is becoming a pain. Plus, I love to travel, and keeping the Kineret refrigerated is a pain in the patooty, especially when in Europe, ice machines in hotels are rare it seems. So I think this next appointment is going to become a discussion only, asking him about the issues you listed. Thank you!
Hi Everyone: I thought I would post on this thread - as I just underwent a lumbar puncture on Wed after seeing my neurologist on Monday for headaches, nausea, left side numbness. He said he suspects it could be infection (no Remicade last week for me), MS, etc...I'm feeling a bit nerved up about it. My lower back is very sore today - hate to call the doc on a Sunday seeing as he is a total boob - but wondering if anyone here has had a spinal tap and if you have any advice.
My prayers are headed out to everyone here. I'm sorry for all of the pain going on - I think RA should be enough of a burden without adding on all of this other stuff. ARGH. Take care everyone.
Jen
Sara~I guess you're right. I do at times avoid and ignore fears....MS hasn't been a huge concern; but as you know from my past conversations with you it's been in the back of my mind for a pretty long time.
I went through a period where I had trouble with my eye site and that's when I started to think about it. My eye site issues haven't exactly been resolved; but my eye doctor claims it's related to "dry eye" and I've been happy to contribute the problems to that as well.
I'm 35; but circulation problems could be the root of my problems; you're right. I'll just take it one step at a time right now and try not to let thoughts of more problems consume me.
As strong as I may appear at times; I still have times when I am certainly just like everyone else and fear more problems. It is best to face things head on......and that's something I do need to work on. Ignoring problems has been my way at times and I do need to over come that.
Jennifer--
I've had more than one spinal tap (just before they diagnosed my MS.) Minor pain in the area of the puncture is normal. Only you can decide the degree of the pain, and whether it's worth a phone call on Sunday to your boob of a doctor. (too funny) But this is what I want to tell you. Sometimes (and this happened to me) the area of the puncture will leak a bit. This makes the spinal fluid unable to get to the area around the brain, where it needs to be--to cushion it. If that happens, you'll experience an excruciating headache when you're upright, but when you lie flat on your back it disappears instantly. I spent two days like that before (duh) calling the doctor. They told me to get back to the hospital immediately, where they performed an epidural blood patch. I won't go into great detail, but it took maybe an hour, was pretty painless comparative the head pain, and the relief was instant and permanant. So what I'm saying is decide if the back pain is bad enough or worrisome enough to make a call today. In the meantime, if you have a terrible mind-numbing headache, call the doctor right away. Yesterday, if you can.
Take care.
Wow! What a lot of input on the possibilities of MS concurrent with RA. I had one MRI ordered by my rheumatologist which then went to the neurologist. He did nerve conduction tests in my legs and hands and ordered the second MRI. He didn't say anything about MS but my PT did during one of our sessions where she said my motion was extremely limited and I was stiff. She said I had some symptoms of MS. I had weird symptoms at the hand clinic too. They said I had nerve damage in my right hand. One visit I could hardly move my thumb and the next week it was much better.
Yesterday, I could hardly walk and today my legs are hardly bothering me. I'm not going to panic until all the info is in. My health insurance said they will send me to the Standford RA center if they can't figure out what's going on locally.
Sara I just wanted to add that if your keneret is working I would stick withHey Lovie,
Denial isn't always a bad thing...it really helps us to survive, to do the things we have to do, and the things we want to do.
When I woke up this Monday morning I had a splitting headache, and my other knee was sticking. I thought to myself I had remicade less than 3 weeks ago and I have 5 more weeks to wait. Then I decided I was just being a bum on Monday morning, and put myself in creaky 1st gear. Now that it is 2 in the afternoon, I feel decent but I am a bit tired.
Besides there are only so many things we can deal with head on...if you have to deal with MS or whatever, you will. It is OK to wait until the dx is made before you accept yet another problem!
Love Yah!
I've with ya girlfriend. I do seem to just keep going and taking it as it comes. I honestly don't think I have MS....but I'll admit everytime the subject comes up it does bring all my "maybe connected problems" to the forefront of my mind.
I'm under very good doctor supervision. I trust them to sound the alarm if there's one that needs to be sounded. Things will work out....no matter what tomorrow brings. I've become a firm beleiver in that over the last several years.
Thanks for your comments Marian. Helps me feel like I'm not just sticking my head in the sand...but reminds me that I'm living a positive life like I try so hard to do.
Lovie I have been under that same cloud of "what if I have MS also" forHi, all. I've posted this matrix (American College of Rheumatolgy) several times, but I think this discussion warrants posting it again. At the bottom, I'll also post the link to the entire article, if you care to read the whole thing. Ya'll decide what you think about the relationship of biologics and MS--after all, when it comes down to it, we all have to make our own decisions, right? My own decision involves thinking about it as little as possible. Keeps you sane. (Denial is a good thing.
Table 2: Biologic Drugs in RA: What are the side effects, doses, monitoring (testing) and costs?
|
Drug |
Common Adverse Effects |
Rare/Serious Toxicities |
Safety Monitoring |
Usual Dosing Regimens |
Annual Cost* |
|
Adalimumab (Humira ® ) |
Injection site reactions, upper respiratory infections (colds, sinusitis, bronchitis, etc) |
Bacterial infection (e.g., pneumonia or joint infection), unusual infections (tuberculosis or fungal infections), optic neuritis or multiple sclerosis, nerve disorders, worsening of heart failure |
Initially, blood cell counts (CBC) and skin test for tuberculosis. With continued use: CBC and chemistry tests for liver function every 3-6 months |
Initially: 40 mg given once every two weeks as a self-administered subcutaneous injection. Maintenance: same (40 mg subcutaneous every other week) ** comes in a prefilled syringe |
,522 |
|
Anakinra (Kineret ® ) |
Injection site reactions, headache, upper respiratory infections (colds, sinusitis, bronchitis, etc) |
Pneumonia, skin or joint infections, very low white blood cell counts |
Blood cell counts (CBC) every month x 6 months, then once every 3-6 months |
100 mg given once a day as a self-administered subcutaneous injection. May be used with an automatic injector device (called Simpleject) ** comes in a prefilled syringe |
,800 |
|
Etanercept (Enbrel ® ) |
injection site reactions, upper respiratory infections (colds, sinusitis, bronchitis, etc) |
Bacterial infection (e.g., pneumonia or joint infection), unusual infections (tuberculosis or fungal infections), optic neuritis or multiple sclerosis, nerve disorders, worsening of heart failure |
Initially, blood cell counts (CBC) and skin test for tuberculosis. With continued use: CBC and chemistry tests for liver function every 3-6 months |
Initially: 50 mg given once a week or 25 mg given twice weekly as a self-administered subcutaneous injection. Maintenance: same ** comes in prefilled syringe or can be mixed from power before use.. |
,436 |
|
Infliximab (Remicade ® ) |
Infusion reactions (itching, hives, rash, nausea, headache), upper respiratory infections (colds, sinusitis, bronchitis, etc) |
Anaphylaxis (severe allergic reactions with swelling of lips, difficulty breathing, low blood pressure), Bacterial infection (e.g., pneumonia or joint infection), unusual infections (tuberculosis or fungal infections), optic neuritis or multiple sclerosis, nerve disorders, worsening of heart failure |
Initially, blood cell counts (CBC) and skin test for tuberculosis. With continued use: CBC and chemistry tests for liver function every 3-6 months |
Initially: given in the clinic or doctors office as an intravenous (IV) infusion at a dose of 3-5 mg/kg (according to your body weight) at weeks 0, 2, 6. Maintenance: IV infusions every 4-8 weeks.If needed the dose may be increased to 5-10 mg/. |
,940-,287 |
Created December 2004.
Written by John J. Cush, MD and Reviewed by the American College of Rhematology Communications and Marketing Committee.
http://www.rheumatology.org/public/factsheets/biologics.asp? aud=pat
Terry--
I forgot to answer your question regarding how my MS was diagnosed. It was a series of things. First the MRI. Head MRI showed only a few lesions, which were inconclusive. Neck MRI then showed large and obvious lesions. Next, the evoked potentials test. Nothing much there. Spinal tap then showed indications of MS as well. The thing that made it "definite," rather than "possible" or "probable" MS was this combination of tests and a history of weird symptoms in the past, which went away or came and went. My symptom now just stays--this is profoundly numb hands. By the way, I was 52 when diagnosed. I'm 57 now. There is no history of MS in my family.
Regarding your sister, what you write of her history tells me she's probably a "definite." She's at a loss as to what to do, you say. Well, here's my thinking--since I started taking Copaxone, I've had zero exacerbations. Now, I have no clue whether it's the medicine or just plain luck, but I don't want to find out. It doesn't remove my biggest symptom--the numb hands--but might be preventing or prolonging the time between exacerbations. So I just keep taking it. Exacerbations are so sudden and life altering (like I suddenly got drop foot one time, and kept falling. It lasted for six weeks, then disappeared.)
I honestly believe TNFs cause symtoms or just exacerbate them if they're already present. Whether or not those symptoms stay around after discontinuing the TNF, I don't know. I was lucky in that my neurologist and rheumatologist were aware of the relationship of TNFs to MS, so they were never prescribed for me.
So there you go..