Frustrating is a good way to describe it. I would be anxious to know WHERE the lesions are in your brain and why your doctor said that were not where MS lesions are located. If she found no other cause for this sudden onset of lesions, more testing needs to be done to FIND OUT there cause, not wait three months for another appointment.
Some of these doctors make me want to pull my hair out. If this is MS, you certainly don't want to "wait" for more lesions to appear in your brain, without getting on what treatment is available. I really think in this case, you need to be referred to an MS Specialist. Someone that knows what they are doing and knows WHAT TO DO to find out what has caused the appearance of these lesions, at this stage in your life.
I really hope that you will follow up with another physician. I wouldn't play the "waiting game" with this current doctor. If you are having attacks and remissions, this is highly suggestive of MS. You do have other problems that could be causing this, but I would still investigate MS. And get a copy of that MRI report and get back to us, when you find out exactly what it said. You also need an MRI of the spine and a repeat brain MRI with and without contrast dye. This is the only way you can say that you have been evaluated throoughly....
Sorry for what your going through and yes it is frustrating to be in limbo land for so long. Have you tried one of the big clinics that deal with auto-immune diseases? Like, the Mayo Clinic or John Hopkins. I'm not sure what some of the best ones are, but I went to the Mayo Clinic a couple of years back. I know they are very good although I didn't have a very good experience there. Anyway, if you haven't already then this is something that maybe you should check into.
I'll be praying,
Hello Karenz (you wouldn't happen to have whippets, would you? :) )
I am amazed when I read stories that sound so much like my own. I have the same type situation with another auto-immune disease (type 1 diabetes, immediate onset when in my 30's). The same muscle weakness, severe fatigue and muscle weakness & pain. Can I ask what other auto-immune diseases you have?
I had reactivated Mono -Ebv at the same time this occurred, and have had a terrible time fighting it back into remission. I had repeated 4 elevated titers. My neuro calls it a chronic Ebv infection & p ut me on anti-virals. They have helped a great deal with the fatigue, not so much with the muscle pain and weakness. In reading about the polymyositis, that might explain why the anti-virals help?
I know I have never seemed to recover from this bout- it just hangs on. It has been about 5 years for me also.
I have never had a muscle biopsy, but now I am curious as to why not. My brain Mri shows 'unspecified white matter disease, listed as multiple ischemic infarcts'. My neuro says these are strokes. I dont know. Contrast dye was used. I just recently had my first C spine mri and am awaiting the results. I had a 'flair up' in December and Jan. of whatever is plagueing me. My Neuro has never mentioned polymyositis. I have a couple other doctors who believe I have MS, and the Neuro does not agree. I believe the other doctors say MS, from the relapsing nature of this, the symptoms, and the brain Mri.
I have abnormal Emg's showing axon loss, and a normal Vep.
My Neuro believes my problems are due to nerve damage from the diabetes (even with the relatively short time span of having it) & the Ebv.
If I go up one set of stairs I am fatigued, pained, and have to rest. Does this sound like your situation?
I would love to hear more about your story if you would like.
All the best,
Hey, you are one young grandmother. Congratulations on those grandkids.
Thanks for responding to me. Yes, I've actually been making tracks to get to the Myositis Clinic at Johns Hopkins in Baltimore. I met someone Sun who went to the same clinic at Mayo in Minnesota and had good luck with getting treatment for her polymyositis.
I just made an appointment with a rheumotologist (the only doctor I haven't seen yet) who experience with myositis. Johns Hopkins will need a local doctor to work with so hopefully it will be her.
Having a complicated history with way too many illnesses and symptoms over the years makes things difficult and not getting anywhere makes it depressing. Thanks for your input and concern. It helps!
Frustration is an understatement, isn't it?? I have the same concerns regarding the brain MRI results which led me to this forum with questions. Thanks for commenting. I will be requesting copies of the MRI and the neurology clinic notes so I know exactly what was spotted and what was said about the lesions. If I want faster followup, I will need to find a doctor in the community because I treat at the VA It moves at it's own pace with it's own policies that I can not change. Believe me, I have tried to no avail.
I treat at the VA hospital in my state because a few years back I had problems with my insurance company not paying my medical expenses. As a result, I haven't had very experienced doctors working with me. I believe they'd like to be more helpful, but it's a huge system that has problems of its own. This adds to the frustration of trying to get to the bottom of things in an effort to feel better. I've been in so many different clinics and seen so many different doctors that have so many different ideas....none of which seem to have panned out.
It is not surprising to me that the VA neurologist said come to the neuromuscular clinic in 3 mos so they could follow me closely. That's actually pretty good for this VA. It usually take 4 months to get an appointment in yet another clinic. I am concerned that they want to 'wait and see' without investigating the leisons further right now. I actually wasn't expecting them to find anything on the brain MRI because they were findling little else with other types of testing. So the lesions have come as a big surprise to me. I never ever thought I had MS, nor did the neurologists ever fmention it, so now there is this MRI. What does it all mean? The neurologist said it might mean nothing! ????
I had a full spine MRI (no contrast dye) done a few months ago. They were looking for nerve impingement or spinal stenosis to account for the proximal muscle weakness I have because I don't think they were convinced it was cause my myositis, or that I really had myositis. The full spine was negative for what they were looking for.
I think the brain MRI that was done years ago did use contrast dye. MS was ruled out then when nothing was noticed.
I have made an appointment with a rheumotologist who has some experience with myositis. That's in Apr. Hopefully she has experience and can help me out with the myositis issue at least. I will look into finding an MS doctor to address the MRI leisons to find out what they mean.
Thanks for your support. I do appreciate it.
My husband's illness was initially described as "proximal muscle weakness" caused by Cushings Syndrome. Then other doctors ruled that out and changed their mind. He has gotten much worse.
Back in July, 2007, I called the Hopkins Myositis Center. they want to do all their own tests so do not try to get alot done before your appt.
I decided they were not the right choice because the office assistant said the doctors usually look for highly elevated muscle enzymes and my husband's enzymes have always been normal.
However, if the doctors rule out myositis, then they may help you figure out what you have. I believe they have a rheumatologist on staff there.
Whippets? Dogs, right? No, I don't have any whippets. Your dog is beautiful.
The dreaded autoimmune diseases that run in packs. I picture packs of wolves breathing down my back. It hasn't been fun.
As you know I had chronic EBV (not autoimmune, but viral). At the same time I was diagnosed with Autoimmune Hashimoto's Thyroiditis which is a very common thyroid disease that causes hypothyroidism. The opposite, causing hyperthyroidism, is called Graves Disease.
My other autoimmune diseases.... Raynauds, Psoriasis (in remission), anticardiolipin antibodies, and Epithial Basement Membrane Corneal Dystrophy. I was recently diagnosed with another cornea problem that may be either viral or autoimmune called Thygeson's Disease. It is rare so not much is known about it.
Over time, I've also been bothered with chronic iron deficiency anemia, and vitamin D deficiency.
My muscle symptoms were related to having EBV which, like you, I never really recovered from. I resigned my job 18 mos after I left it (for 2 weeks to rest and recuperate!). That was very sad that I never felt well enough to return to work. When it was discovered that I had Vit D def, I thought that was the reason for the muscle weakness, twitches, spasms and pain. But after months of taking mega doses of Vit D, nothing changed even when the Vit D levels were back to normal. That's when I went to see docs at the VA. That was about 2 years ago I think.
My arms fatigue easily when I use them over my head (shampooing hair, putting things away in high cabinets, etc) or in a repetitive motion like vacuuming. No, I'm not trying to get out of housecleaning!!! Earlier on, my arms and shoulders fatigued easily at the computer, driving, even holding a book. My leg muscles just can't make it up stairs like a normal person. At first, I had to rest with each step. Now, on a good day I can make it all the way up, but not without feeling fatigue, buring and getting out of breath. This still fluctuates so some days I'm back to a couple of steps at a time. I usually always have to go realy slow up the stairs so I'll have others go up beofre me so I don't hold people up. When I bend down or squat down, my thigh muscles burn like crazy and fatigue. On a bad day, I can't get up on my own. I usually can get out of a chair, unless it's really low.
WOW, you are so young to have TIA's - transient ischemic attacks or mini strokes. Did they say there were also leisons of some type?
Way back when, one of the doctors thought my muscle fatigue could be due to hypothyroidism, but my thyroid has been functioning on target. How's your thyroid? At some point in time, they tested me for Myasthenia Gravis and then mitochondrial diseases. All tests were normal, so those things were ruled out.
Then they thought I had polymyositis, but all the enzyme testing came back within normal limits. Eventually they decided to do a muscle biopsy anyway and it was positive for atrophy of type II muscle fibers and they reluctantly gave me the diagnosis of non-specific inflammatory myositis. It is not a specific diagnosis meaning they don't really know. Then they did an EMG (very abbreviated) which was negative, then they ordered the MRI's. I don't think they thought anything would show up in the brain MRI either. It was just the next thing to do when I kept asking them not to give up on me. VA doctors won't treat me for polymyositis without more specifics. I'm instructed to call them if symptoms get worse, but they don't expect them to. They surmise that the worst of the muscle disease and symptoms are over (when I thought I had EBV all those years) and now I'm left with risidual muscle weakness. That may be the case...who knows. I sure don't, and they don't either. They say "I don't know" to me alot. Some appointment are so distressing that I just cry because I can't maintain my emotions all the time.
You can go to The Myositis Association website (tma.org I think) for more information on polymyositis symptoms. It's worth the read, just in case. Myositis diseases are rare so not many doctors have had patients with myositis. They wouldn't always think to test for it. The muscle biopsy comes after all the specific blood work tests, and typically the EMG (which test for nerve and/or muscle dysfunctions). The VA kind of messed up the order of tests for me because of inexperience. You don't want a muscle biopsy if it's not necessary...trust me. The website is very informative for anyone to take a look at.
Well, I hope I answered everyones questions. This was a lot of typing for me. I thank everyone for jumping into this discussion. We can all benefit from each others experiences, or offer a sympathic ear. I'm so appreciative of you all.
So you and your husband are still looking for what's wrong? I hope the info surfaces for him soon. I'm sorry he's getting worse. What are his symptoms, if you don't mind rehashing them? Not knowing what's wrong is very difficult, isn't it?
My enzymes have never been elevated either. But then the muscle biopsy showed atrophy consistent with myositis. My doctors were sticklers regarding having abnormal labs in order to make a diagnosis. But since then I have met other people like me who have normal enzyme levels and received diagnoses of polymositis, and are getting treatment that helps. It's frustrating, but you have to keep searching for answers.