Hi. I was diagnosed with Reflex Sympathetic Dystrophy in January, which is now in both feet and legs. I also have had Fibromyalgia since 1991. However, my symptoms have been worsening and the neurologist and pain management doctor feel there is something else going on as well. I've gone through MRIs, an EMG, evoked potential testing, and MRA just yesterday, and many trips for bloodwork. So far the neurologist said he doesn't want to do a Spinal Tap. I think he mentioned waiting for a while. I'm concerned because I know that the earlier you treat MS, if that's what this is, the better control you'll have over the symptoms. Although I do not know the result of the MRA yet, I received the info from my SSEP this morning which shows 'mildly abnormal' results in my left leg 'because of the delay in both the P37 and N45 waveforms of 5 msec.' I've done research on my symptoms and each one has led me back at one point or another to MS. Recently I have had 2 separate episodes of feeling horrible after I've taken a shower. One wiped me out for 2 days, the other was not as bad because I quickly got in front of our fan and tried to cool down. It lasted less than 5 hours, but I ended up with a migraine which went through the night.
My symptoms which I have documented are extensive, but I will list several ... fatigue, migraines, tremors, weakness (especially in my legs), dizziness, mental confusion (similar to being in a fog), trouble getting words together during episodes, vision disturbances, balance issues (I use a cane most of the time and a wheelchair at times b/c of the pain in my feet from RSD, however the balance issue seems separate), and electrical-type surges in my neck and back which sometimes radiate to my arms. Those are a general list, but other symptoms have been experienced as well.
Because my tests were normal, the neurologist said we would probably have to wait quite a while to get an answer, and we may never find the answer. Now that this SSEP has come back abnormal, is this possibly leading to a diagnosis of MS? When do doctors usually start meds for MS in regards to test results when other things have been ruled out? and, is an MRA another way of ruling other diseases and conditions out or does an MRA have any basis in determining MS?
An MRA looks at the blood vessels, which MS does not affect, afaik. Since your SSEP has come back abnormal, and since you're experiencing symptoms which sound like MS, I would push for getting an MRI done. You'll need it with and without gadolinium contrast to check for active lesions. Preferably a 1.5 Tesla machine or higher.
At this point in time, meds for MS are quite expensive, and there are no oral medications. You have your choice of subcutaneous (betaseron or Copaxone) or intramuscular, or IV administration. For the subcutaneous medication, prices can range from $65 a box to $150, depending upon your insurance. As for when they decide to administer it, it really depends upon the neuro. Some are scrupulous in getting you on the medication right away - others want to wait until you're definitely diagnosed.
I did indeed have an MRI, but oddly enough it was done without contrast, which surprised me. I think they did it to appease me as I had been calling to move things along a bit quicker. The nurse actually ordered it for me. No lesions were found in my MRI. I agree the contrast needs to be added to my next MRI.
I have been telling my husband that I just feel like my body is not my own anymore. As I checked my symptoms a while ago, I realized they were leading me to the MS sites with almost each one, except for the ones I had which were RSD related. The neurologist told me he didn't think this SSEP would come back abnormal, so that leaves me now to wonder what he's thinking. I won't hear from him until next week when the MRA comes back (which was done with contrast). I did mention to him about an MRI with contrast during my last visit, but he didn't feel at the time that my symptoms were following the same course as MS. He said he wanted to wait about six months and retest. Again, with the abnormal results, we'll see what he does. I don't know what he was checking with the MRA except I've had weakness and migraines.
Thank you SO much for responding. It's nice to connect with people.
Did your neuro read the MRI's himself, or rely on the radiologist's report? My neuro went over the MRI's with me, before looking at the radiologist's report, and there was a huge difference in what he saw compared the report. Plus, I think my neuro said that contrast is very helpful in detecting new lesions.
My sister was just diagnosed with RSD and is having a heck of a time. She has MS, which complicates the whole mess. A few years ago, she fell, and ever since, she's not been able to walk. She's had foot drop, surgery, and lots of pain. When she stands, that foot turns black. I'm wondering if MS and RSD are connected . . . This is a good question.
I have pain in my feet, too. What are your other symptoms?
I think that it may be time to part with your current neuro and find someone else (maybe even an MS specialist). Plus, you probably need to see a good ophthalmologist (or neuro-ophthalmologist). If this MS, then you'll want to have that taken care of quickly to prevent future problems.
The neurologist looked at my MRI as well as the report. No other lesions are showing up, however I feel the contrast may have showed something. I could be in the early stages and it worries me that there are meds out there to slow things down that I'm not being offered. I understand though that the neuro isn't sure. He said the meds are expensive and not pleasant (shots). Our insurance has wonderful coverage on meds so that wouldn't be a problem. I think, at this point, I'd take the chance of getting on them and later finding out it ISN'T MS rather than letting things get worse before starting the meds. My mom died from liver disease, so Copaxone (sp) is the med I'd prefer. The other ones can affect the liver. I've already done my homework and am just waiting for the neuro to take the next step.
RSD is horrible. Both my feet are always in extreme pain. Even sitting doesn't help that. I walk with a cane, but on days when I can't stand that, I use my wheelchair or just don't go anywhere. Right now I'm on medical leave from work so I don't have to go out. I'm in college, but only have one class every two weeks in this semester (which ends next Wednesday). After that I have one more class (only 8 weeks, once a week) and then I graduate in May. When I started I had such high hopes for what I was going to do, but it's difficult to see sometimes with all these health problems. Does your sister see a pain management specialist? I have a wonderful one who also HAS RSD, so she understands fully what is involved. Aqua Therapy has been the best treatment for me. It won't make it go away, but just being in the water without the stress of gravity has been wonderful. You should mention that to your sister.
I don't know if RSD is related to MS. I often wonder if Fibromyalgia isn't related though. I was diagnosed with that in 1990. There are so many things that have happened to me, healthwise, that it's difficult to see the different diseases separately. You know how sometimes people will say, "I feel like a number!"? Well, I feel like the alphabet. FM, RSD, and possibly MS. My RSD started after I broke my toe. Was feeding hummingbirds and stepped off the chair right into a flower pot. My middle toe on my right foot slammed straight on into the side of it. Didn't get it x-rayed until 2 weeks later. Ended up having surgery in October to remove a Morton's Neuroma, and that's when things really heated up (literally). I couldn't stand to have my sheets touch my foot! No wind, nothing. It was like my foot (especially the part by the toes) felt like it was on fire. The pain was unbearable as well. Over the course of about 6 months, the RSD moved up my leg, then into my left foot and leg. Now I don't feel the burning as much as the pain. I also now have burning in my back and sometimes in my hands. My feet are so cold that they don't even show up on the temp strips that the doctor uses. Hands are starting the same. That's why I was sent to the neuro. My pain management doc wanted him to rule out everything else before diagnosing me with full-body RSD. Now the neuro says he feels I have 1 and possibly 2 other things going on. It's just a matter of finding out WHAT! I think I know, but I'm not the doc. Fatigue is another part of RSD that can be debilitating. I feel for your sister. It's life-altering. And, no cure is on the horizon.
My eyes change so much that I need new glasses every year, and half the time I can't wear them because the prescription doesn't match my eyes sometimes. I do see a very good opthalmologist. Best in the area. He told me I have early stage cataracts. I'm 49 and he told me this about 10-15 years ago. I'm just falling apart!
This neuro is supposed to be a good one, but I am SO ready to change. My husband, however, keeps telling me to stick with this one until we know more. He isn't against me finding one for a second opinion though, so I want to do that and then switch over later to the new one's care. I can't stand feeling dismissed by doctors. My Pain Management doc is so wonderful. I think I'm spoiled!
Thanks for responding to my post, Deb. Much appreciated.
My sister is in a bad place with the RSD. Her orthopedic doctor just diagnosed it, but she's had it probably two or three years (since her fall three years ago). She's since been diagnosed with MS and foot drop and now is on Tysabri infusions.
She is also getting PT which she says is making her pain unbearable. She can't stand anything on her foot--sheets and her depression has at an all-time low because she cannot deal with the amount of pain that she has. She hasn't tried the water therapy (but did buy a swimming pool for her backyard, which she loves in the summer) and a pain management therapist--these are excellent suggestions.
She is taking three different pain medicines that really isn't keeping the pain at a bearable amount. Her orthopedic doctor is considering surgery to "release the nerve" that may be entrapped. Does this sound like something you would do for RSD? I wonder if she has RSD if this would make things worse, actually. She'll do just about anything to get rid of the pain.
I was diagnosed with fibromyalgia years prior to my MS diagnosis. I was also diagnosed with Raynaud's and have lots of pain in my feet. My neuro refutes the fibro diagnosis and tells me that I've never had fibromyalgia. I have lots of pain, but he attributes this to pain from the MS. I only had one or two of the trigger points when I was diagnosed with fibromyalgia.
I am taking Copaxone. I remember having trouble with a constantly changing eyeglass prescription. I've since been diagnosed with optic neuritis and my vision has not returned to normal.
I agree with your decision to get a second neurologist's opinion. It's time to get a fresh look at what you're going through. You have too many symptoms that appear to be dismissed by your current neuro.
I honestly can understand your sister's pain. She needs a Pain Management Specialist a.s.a.p. Having surgery could cause the RSD to worsen. As for releasing the nerve, if he's talking about actually cutting the nerve, that will cause some type of feeling to be lost to where the nerve leads. There have been people who have gotten to the point (this was years ago, but I'm not sure if it's still going on) where their pain has been so bad that they've had amputations; however, the pain just continues at the amputation point. This is a horrible disease. If I were your sister, just an opinion, I'd consider a morphine pump implant where she could at least get some relief through the meds. They also have spinal cord stimulators which are implanted, but it's a hit-or-miss on whether or not it will actually help. Is she in a wheelchair? I have a cane that I must use to walk around, but there are days when I'm in such pain (and I have bad balance issues) where I have to use my wheelchair if we go out. NO ONE should have to live with this type of pain ... there are options available to her. Tell her to find a pain mgmt. doc now!
As for physical therapy, been there, done that! It was only done after I had my injections when I was diagnosed. The injections (I can't remember what they're called now but they are done to diagnose RSD ... they allowed the pain in my right foot to subside and I actually had heat in my foot, although it was only for a few hours) allowed me to go through the PT, but I got nothing from it. PT is not for RSD, believe me. Aqua therapy is the thing to do, seriously. It may not make the pain subside, but it will allow her to exercise her other muscles, which are more than likely weakening.
She's got a long road ahead, as we all do, but the sooner she gets this under control the better her quality of life will become. I imagine any type of relief will help her at this point. Three years of having RSD before being diagnosed is extreme. Wow. Feel free to give her my e-mail address, Deb. Talking with someone who understands and is going through the same thing does help. I'm so sorry she's going through this.
To sum it all up, PAIN MANAGEMENT SPECIALIST (A.S.A.P.) AND AQUATIC THERAPY!!!! Plus, a counselor, psychologist, or simply a friend with RSD is a great help.
On the Fibro issue, I had 11+ trigger points. Was diagnosed at Cleveland Clinic after seeing many doctors. Had a great rheumatologist who was 'up' on FM and helped me with meds. That is a huge viscious cycle disease, but it's manageable. At least with that, exercise is something we can do. Since my RSD, I can't do anything but aqua therapy. I raised 2 kids while dealing with FM, and the only times I was truly down and out on the couch were when I was extremely stressed out or when the weather changed drastically. I love fall, but it's my worse time of the year for pain with FM. Well, the change from summer TO fall. Usually the end of Septmeber until we finally get cold weather that stays. There's a huge cold front coming in here tonight (snow on the way) and I'm on my pain meds constantly. Once it gets cold and stays that way, the FM pain will ease up. Because of the RSD and maybe MS, I don't know what pain to relate to which disease. I'm hoping I won't feel like a huge bundle of muscle spasms for very long.
Does Copaxone have many side effects? As I said earlier, my mother died from liver disease. She started with a fatty liver, which then turned into cirrhosis (sp). She passed away Nov. 28, 2006 here at home with us. Because of all she went through, I am extra leary of any drugs that affect the liver. That was the only drug that I saw that didn't affect the liver, so to me, it would be my only option. I bought the book, "Multiple Sclerosis for Dummies" book yesterday which really emphasizes the need to be diagnosed and to start treatment early on. I'm hoping the neurologist will make a decision as to the abnormal test result and my symptoms and at least get me on something. I don't care if I have to have injections every day ... I just want the progress of the disease (if this is MS) to slow down. I'm going down at a rapid pace. Have gone to my opthamologist several times over the past 5 years due to severe eye pain. He said there was no optic neuritis, but couldn't tell me why my eyes hurt so bad. You can't believe how many different prescription glasses I have at home. I could be the store!
The book I'm reading speaks of a team of people to work with when diagnosed with MS. It explains that we have to feel comfortable with our Drs. That's not the case now. We should be able to call and receive a response within 2 days ... I'm lucky if I ever get a response, unless I get my husband involved, then we get answers quick! Right now, because I don't have a diagnosis, I'm leary about changing. But, I could find someone and go for a 'second opinion' just to get my foot in the door and then go from there. My problem is that the neurologists that I know are good in my area aren't taking new patients. One is moving and the other, I believe, will be retiring. I do have a lead on one that moved into the area (who works with the one who's moving) a year ago from Denver who's supposed to be good. I think I will make an appointment with him. I know I'll feel better once I find someone who is caring and compassionate (if he is ...?????). I already have the PCP that I like, I also have a therapist who is wonderful to talk with when I'm stressed or depressed ... I see her a lot! And the other people they mentioned were a good nurse (with the neurologist) who can work with medication and coordination of care, and a rehab place that is 'up' on MS. I have all in place except the neurologist and nurse. That would be my team. We supposedly have a place in Pittsburgh that is a one-stop shop for MS, but I'd like to stay local if I can put this all together well. I'm so tired of running to Pittsburgh. If I can limit my visits there, it will be good.
Well, sorry for the long comment. Wanted to address each part of your note. Please tell your sister what I mentioned about RSD. My heart goes out to her. I know what she's going through.
I will call my sister and tell her what you've told me. I don't think she's done much research with RSD, being that the diagnosis is new to her. I do think she would even consider doing an implant, even if there was a change of it helping her. My sister gets around on a knee-roller in her house and work (she does miss quite a bit) and has a wheelchair when she's out (which she doesn't use unless she's guaranteed that someone is available to help her get it in and out of the car for her).
Copaxone is a drug that is well-tolerated. I don't get blood tests, like my sister did with Rebif when she was on that (or with Tysabri now), so I don't think it's likely (if at all) to harm the liver. From what I understand the medicine is an amino acid, which is more natural to the body than the other DMD's. I don't have any side effects from the medicine. I have had a couple of minor occurences of immediate post-injection reaction--which is not like what was described to me in the literature or the Shared Solution nurse.
Some people have trouble with their skin (bumps or whelps, etc.), where the medicine was injected, but I don't have that problem. When I first began the shots, I had really big whelps. I no longer get this, though. When I first started I used the Autoinject, and found out pretty quickly that this wasn't going to work for me. My husband started doing the injections. Now, he manually injects about half the shots and I manually inject the rest. It is a medicine that you have to inject every day, but having been on it about 9 months, it's been such a routine, that it's almost like taking my night time medicines. I am happy I chose Copaxone.
I have to travel two hours to see my neurologist, but he's the only person that I trust. I've been in Limboland too long to see someone else. I actually thought, though, that my problems were rheumatological, so I didn't see a neurologist. The first neurologist I saw, in May 2007, dismissed me when I showed him areport of an MRI completed without contrast on a weak machine in 2005 (my PCP was looking to see if I had a brain tumor because of my relentless migraine attacks). He didn't even look at the MRI images himself. So, I fired him, and went to my sister's neurologist and was diagnosed with demyelinating disease in June 2007 after an MRI (and in Feb 2008 an MS diagnosis).
Did your neurologist go over the MRI himself? I am finding a huge diference in what the neurologist is showing me when we go over the MRI with him and what the radiologist's report says. I probably wouldn't have the MS diagnosis if he based everything on the radiologist's report. I saw several lesions, and they were not small, when he pointed the lesions out on my MRI just prior to my diagnosis in February. The radiologist reported "one single lesion" in the frontal lobe. This is completely contradictary to what the neurologist's comments were. So, this is also something to watch for.
By the way, my sister also had problems getting a diagnosis too--even after her fall and foot drop, findings of brain stem lesions, etc. She went from one neurologist to another. However, she did find the right neurologist and started DMD's. For the first time ever, her MRI was clean of new lesions (because of the Tysabri). When you know something is terribly wrong and you're having serious neurological problems, you want to get this nipped in the bud. Many times with RRMS, you may have some residual symptoms that just don't go away, unfortunately.
Have you had a cervical or other spinal MRI's? The electrical shooting sensation, is common for people with lesions in their spine. Also, the weakness in the legs points to spinal lesions. Also, like you said, an LP sure would be helpful. Have you had a bunch of blood tests to rule out other diseases that could cause neurological problems? I guess the rheumatologist has ruled out lupus, Sjogren's, etc. before you were diagnosed with fibromyalgia.
All other diseases that he tested for (as you mentioned) were ruled out. My blood work comes back great, except for a low calcium something and a high something else that is related to it. My PCP said he feels it's because my bones aren't real strong.
MRI's and such aren't discussed with me by this neuro. He tells me, "I'll look them over and get back to you." That doesn't happen until we start pestering him for his opinion and for other testing. Once, not long ago, he said he'd call us by 'Tuesday', but if we didn't hear from him, we were to call him. I did. He was out of the office for the rest of the week. Talk about being P'd off! I was livid.
It's been like pulling teeth to get this guy to talk with us. I even told my husband that I wouldn't put it past him to tell me my SSEP was normal (it came back 'slightly abnormal'). I know better and will jump on it if he tells me anything less. He's simply reluctant to keep going until we get to the bottom of this. We have to push him to keep going. I'm half tempted to tell him I want a spinal tap. Mentioned it last time, but he told me it wasn't time to do that. When IS it time? When I'm in a wheelchair permanently?
I have been less stressed these last few days knowing that a test has finally come back abnormal. It's so strange to be elated to have an 'abnormal' test, but I don't think the neuro believed I was having so much trouble! In fact, he told us that he doubted the SSEP would show anything!
I've also been thinking back to my younger days. There are things that I felt over the years that could have been related to MS. There was one day, while walking in the mall, where my legs had such pain that I could NOT take another step! I stood there for about 5 minutes, not knowing what I was going to do. Then I mustered up enough energy to move to the railing and was able to stay there until the pain subsided enough for me to get home. It scared me enough that I remember it vividly. Everything that has happened to me as far as pain, eye issues, migraines, twinges, etc. I have chalked up to Fibro until I was diagnosed with RSD. Then these other symptoms really hit hard and now I can't distinguish which disease is causing what symptoms. It's confusing.
According to my MRI's, no lesions have showed up. I still think I need an MRI with contrast, but so far none have been discussed. Another thing to put on my list!
I hope your sister can find a good pain management specialist who will be able to lead her in the right direction so she gets relief from her pain. That's a definite necessity to have a PMS on board for RSD. No doubt about it. They are the ones who will manage her pain and PT, and help determine what is needed for her particular case.
Well, it's after 2 AM. I'm getting tired. Guess it's time to hit the hay. Have a good evening. Talk to you soon.
Your current neuro won't be of much help you if you're thinking that you have MS. Your MRI's should be done with MS protocol: in thinner slices, with and without contrast of your brain and spinal cord (I don't think you need contrast of your spinal cord--I never get this), using a strong closed MRI machine. Plus, your neuro needs to read the MRI's himself (in front of your preferrably). He also needs to consider an LP, which he's fluffed off. It also wouldn't hurt to have a visual evoked potentials test (VEP) since you've had some eye problems in the past. Optic neuritis is often hard to see (sometimes doesn't show up on the MRI's or an exam of the optic nerves in your eyes).
Most people on this forum recommend an MS specialist (a neuro specializing in MS). Because I've heard disappointing stories from others on the forum about the specialist not being what they've expected, I'd check around with others that you know with MS to find a good one (on this forum or friends/co-workers/fellow students, etc.). I have a regular neuro and he's really good, so don't rule out regular neuro's if you hear of good things.
Sometimes, early on in the disease, lesions just don't pop out on the MRI. This is why MRI's should be done on the strongest machine available with MS protocol. Plus, the lesions on the spine, are much harder to see. Lesions on the cervical spine area are more common than the rest of the spine, so typically MRI's are done just on the brain and cervical spine. If no lesions are found in those places and you're presenting symptoms of problems in the mid-lower spine area, then you should have an MRI if this area. I've never had an MRI of anything but the brain and cervical spine area myself.
I've had the very same thing happen at the mall several times! I never go shopping alone because of it, unless I'm feeling great and taking short trips (but I also live very close to a mall to have someone pick me up). I have a doctor's order for a wheelchair, but haven't gotten one yet.
I notice that the time that my feet have the greatest pain is in the mornings and late evenings. I sometimes need help getting to the restroom in the mornings or to my bedroom in the evenings. I bet it wouldn't hurt for me to have a cane or a walker or something to help. You know though, now since I'm thinking about it, I've not needed help getting to the bedroom or bathroom in quite a while. Is it the Copaxone? I have no idea. With the DMD's, I've been told that the medicine is designed to help prevent further attacks/lesions. Remyelination takes time (if it does in fact occur). However, I think I am noticing some improvement in regards to the unsteadiness and pain in the feet issue.
I have a long history of people if my family with autoimmune disorders, so it's not a shock that my sister and I are both diagnosed with MS. Did your mother have an autoimmune disease of the liver? When I was younger, I noticed not feeling well, too. I can't prove this, but I think my body was attacking itself. I had all sorts of symptoms that didn't fit into one neat, nice, little category. It's my theory that sometimes autoimmune disease starts out that way--not always one specific thing, until years later, it settles into one definite thing. I think that's why it took me so long to get diagnosed.
Do you have zapping or buzzing going on anywhere besides your back? Oh, by the way, the zapping or the pain down your spine is a common symptom in MS (L'hermitte's). How about numbness, tingling, difficulty swallowing, bowel/bladder issues--do you have trouble with this? Any other weird symptoms that you may have chalked up to fibromyalgia? For years, I chalked up my symptoms to either fibromyalgia and an undiagnosed rheumatological disease.
Oh yes. I have chalked EVERYthing up to Fibro for over 17 years. This could have been going on long before now. I've got that zapping going down from my neck into my back and into my arms, sometimes my legs. I have had an issue where I feel like my throat isn't as able to push the food down. Just thought I wasn't chewing it enough, but it even happens with liquids. The only bowel/bladder issues I have is that I can go days upon days w/o a BM. I make more frequent runs to the bathroom to pee, but I've been drinking a lot, so I chalked that up to Irritable Bowel Syndrome and too much water! I think we can all see our symptoms relate to something else when we've got more than one disease going on. Lately I have been having horrible symptoms after I take a shower and, as I noticed today, after I exerted some effort to dust and run the sweeper before company arrived. Had to sit in front of the fan to cool off. Feel like a wet noodle now.
My mom didn't have (at least no one said anything) an autoimmune disorder. She had other problems, like diabetes, high blood pressure, and liver disease ... had breast cancer but that was taken care of, and they just took care of each disease separately. It makes sense to go to an MS Specialist, but I thought I needed to have a diagnoses to be seen by him/her. Duh. Did I mention I'm a bit nutty in the head as well? Confusion, Memory issues ... Speech problems (think of the words, but they don't come out the way they're supposed to, and sometimes I stop mid-sentence!) I will definitely ask around for a good MS Specialist. That's probably my best bet at this point. Thanks for telling me. My dad passed away when I was 11 from cancer and from what I know there aren't any autoimmune disorders on that side of the family.
I did have a VEP and a BAEP. These were done at a different hospital than the SSEP. both of the other ones came back normal, but I don't think they were done right. The SSEP person was SO thorough. Measured my head as to where to put the thingies (here we go with the word stuff ...) and took longer to prepare my tests. The other woman stuck them on and I was in and out from BOTH tests within 20 minutes. I wish I could have them redone. I'm sure they'll do them again at some point. I'll know better where to go.
Well, I've got to go stir the veggie soup. It smells so good. Wonderful on a snowy, cold day like today.
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