Path: utzoo!utgpu!news-server.csri.toronto.edu!rpi!zaphod.mps.ohio-state.edu!swrinde!cs.utexas.edu!yale!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt From: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) Newsgroups: misc.handicap Subject: MS Message-ID: <18270@bunker.UUCP> Date: 21 Mar 91 05:46:15 GMT Sender: wtm@bunker.UUCP Reply-To: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org Distribution: misc Organization: FidoNet node 1:105/41.15 - Busker's Boneyard, Portland OR Lines: 85 Approved: wtm@bunker.UUCP Index Number: 14106 On Thu, Feb 21 Patricia Ferguson (1:123/13) wrote the following to Adrienne Barhydt: AB> know I've skipped a LOT here. PF>You actually covered it quite well for me. My husband was PF>"tested" by way of MRI and "nothing abnormal" was the report. We PF>really believe it is central nervous system lupus (which his PF>sister has also) and not MS. But he believes the neurologist has PF>not ruled MS out completely yet. It scares him terribly, has PF>since he was young. He saw an advertisement on tv and it has PF>stuck with him ever since. If he saw this commercial many years ago tell him to forget it. There is plenty to be scared of with MS. I do not mean to belittle his fears in any way. It's just that older info (pre-1980) is unnessarily bleak and not all that accurate. When I was diagnosed in 1983 (almost wrote 1883, ha ha), I quickly resolved not to read anything published before 1980. It is thorougly obsolete and 1985 woulf probably be a more reasonable cut off now. My experience is that although they can't cure the disease, there is a lot they can do to help a person live with it from medications to braces (some quite simple) to physical and occupational therapy to counselling. From my reading, I get the impression that this was not the case before the 1980's. PF>What sort of leg problems would be some of the more common ones PF>at the beginning based on your observations? Rusty has some leg PF>problems but I think it is just mainly aches and pains, such as PF>an arthritic type pain, especially in the hips. He does have Gait problems are common. I just started to walk weird at onset. From weird it got steadily worse - lots of spasticity, severe foot drop. It can make you walk like you're drunk. Clonus, a weird jerking or shaking of the leg, is possible. Weakness is common. Balance problems, coordination problems. PF>nodules that come and go on his legs but we believe that to be a PF>low level of vasculitis. I guess what scares him the most as far PF>as symptoms go would be the vision problems. I haven't read Black holes in your vision are a possible problem. Optic neuritis starts as kind of a dimming in the center of your field of vision. Double vision is common. My neuro. always gives me a color vision test; must be looking for color blindness. Yeah, I agree with Rusty. Vision problems are scary. PF>quite enough on the subject yet (not like the research done on PF>lupus to this point!). He has tingling and occasional numbness PF>in his extremeties, which we also think is due to vasculitis PF>since Raynauds has been diagnosed in his hands. He has had Bells PF>Palsy 4 times on one side of his face and once on the other side. That's the thing with MS. There's such a wide variety of possible symptoms that diagnosis is hard. But as you've learned all kinds of diagnosis is hard. PF>I guess I just need to know some more about the subject of MS and PF>the patient's feelings that go along with it. Sometimes doctors PF>dont shoot so straight with you about things. And like you said PF>their knowledge can vary. I havent read very much about it, just PF>a pamplet or two from the doctors office and about depression PF>associated with it from another book. (Do you have problems with PF>depression also? I know depression goes along with illness, such PF>as lupus, but does it cause you more problems than the physical Well, depression. That's another hard one to sort out with MS. There is the depression that goes with any diagnosis of chronic illness. But there is also the possibility of emotional and cognitive problems as symptoms of MS. How do you sort it all out? Here's an area where you MUST stick with very recent materials. They are just beginnning to do some good studies that show that these problems do exist with MS. I don't think you'll find anything approaching a difinitive answer here. PF>problems at times?) You have given me more here that what I have PF>read in my literature. I appreciate it terribly. And Rusty does PF>too! Thanks again! You're welcome. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org