hello everyone - rather lengthy intro and questions

March 13, 2004

Hello everyone,

My name is Rita, and I just joined last night. I live in a very arid region of Utah, called the Uintah Basin, in the ultra-small community of Gusher.

I'm sorry this is so lengthy, but as I told Sharon privately, I feel you need to know quite a bit about my "history", so you can know why I'm so very frustrated and why I have the questions I do. I must admit I'm rather embarrassed to complain about my situation, because so many of you are dealing with challenges that are beyond what I can comprehend - yet like Sharon and Bill - you are still upbeat and positive about life, and see the rainbow instead of the rain. I'm the first one to admit that all that I've been through has very adversely affected my personality - I just don't know how much of it is due to my wrong choices in how I deal with things emotionally, and how much is actually caused by my medical problems. I used to be cheerful, helpful, caring and kind. Now I'm a grumpy old bear.

In the mid 90s I started noticing problems with my hands - difficulty separating multi-part invoices at work, getting coins out of the cash register, etc., and great difficulty at times in walking - as though my legs had forgotten how to work - every step was an effort. I told the older doctor who was my gp at the time, and he simply shrugged everything off and chalked the walking problems up to "deconditioning" (meaning overweight and out of shape). I was discouraged, but didn't know what to do.

In 1999 I developed horrendous pain in my spine and SI joints. The same gp referred me to a "physiatrist" (physical medicine and rehabilitation), a medical field I'd never heard of. He ordered x-rays and we discovered my pubic bone had quite literally blown apart, and I had "'white-hot" inflammation in it and in the SI joints. Over the next year and a half I was in physical therapy at least once a week, and in ER level pain a lot of the time. Shortly before I saw the specialist in June of 1999, I started sleeping upright in a rocking chair, and that has been my "bed" ever since - the doctors all say I'll never be able to sleep in a bed again. As a result, I suffer from severe sleep depravation.

In November 1999 I went to see my optometrist, as I was having difficulty "seeing" where the road was - if I looked far ahead I could walk fairly well, but when I tried to look down at the ground to make sure I didn't stumble over something on the edge of the country road I was walking on, I couldn't tell exactly where the road was in conjuction to the placement of my feet - so I found myself sort of stomping along, putting my feet down harder than necessary. He did a very thorough exam and said I had vertical diplopia, and that if the regular MDs couldn't quickly determine the cause, I could end up with permanent double vision. He thought that surely there was some specific, treatable and curable illness I'd rather suddenly developed. He put prisms in my lenses, which he has had to replace with stronger and stronger ones over the past few years. And he now says I have horizontal diplopia too.

In February of 2000, I returned to the specialist's office, because the problems with my hands had suddenly returned and was worse than ever, and the same with the difficulty walking. Added to that, there was a feeling of extreme weakness in my right leg, as though it wouldn't support me, but it never buckled. After examining me, he said I'd either had small strokes and was continuing to have them, or I had brain lesions. He sent me for an MRI, which the radiologist claimed proved that I have MS. I was too anxious to wait to hear from the specialist, so I called the radiologist and that's what he told me. He also told the specialist the same, so that doctor called me at home a few days later and said "Rita, you have MS and it will affect every area of your life, greatly, for the rest of your life." I very much wish I'd taped my conversation with him, as not long after that he did sort of a "back pedal", and now claims he only told me I "possibly" have MS. (When I told the optometrist what he originally said, he told me he felt that perfectly explained the relatively sudden onset of the vertical diplopia.)

He referred me to a neurologist in Salt Lake City. As far as I'm concerned, the man is a total quack!! In reviewing his "findings/report" together, the specialist and I found at least 4 different statements he totally contradicted himself about!! He stated in the report, that if a lumbar puncture were done on me, he was just certain it would be a "false positive".

The specialist and I were determined to try to prove that I do indeed have MS, so he did a lumbar puncture in his clinic a few days later. I obtained a copy of the report, and I'm so happy that I did, and started asking questions, because the very first line indicated that I have a severe immune deficiency, called Common Variable Immuno Deficiency. The specialist, in his zeal to check the notiations on oligoclonal bands, completely missed the information on the immune deficiency!! I'm told that since I lack the proteins made by healthy immune systems, I cannot produce the oligoclonal bands. So, that left us nowhere in the MS diagnosis.

He then referred me to a neurologist in Colorado. I didn't want her to be influenced by the "quack's" comments, or anyone else's, so I just had her look at my MRI films and examine me. I told her I'd applied for the second time for Social Security, so I needed a definitive diagnosis. She said that as far as she was concerned, I had MS, "until proven otherwise". Yet it seems now she only told me that to get rid of me so she could get on to her next patient. When I got a copy of her written report she stated that I didn't have any symptoms that would necessarily indicate MS!!! However, she referred me to a woman who is supposedly one of the leading neuro-opthalmologists in the US.

I had a very lengthy appointment with that doctor in Salt Lake City, and I taped the entire "visit", as I'd gotten sick and tired of doctors telling me one thing to my face and then something else entirely in their reports. She knew she was being taped, she told me that I didn't have MS, but she was certain I had something "worse" - Central Nervous System Vasculitis. Yet again, in her report said something entirely different. She claimed that I only needed to see a "shrink", and then I'd surely be able to return to work in no time - as though I have no immune deficiency, no split pelvis/broken pubic bone, no herniated discs throughout my entire spine, no vision problems, no proven/tested dexterity problems - nothing wrong with me at all, and further, she said she thought I was suicidal - which of course wasn't the truth.

In 1999 I started developing a sensation of vibration in my left foot. That sensation has been much more severe since the 9th of this month, and occurred of course several times since 1999, including late December when I saw the gp I've been going to since 2000. I told him about the sensation, and his mouth dropped open. He repeated my comment, in the form of a question, as though he couldn't believe he'd heard me correctly. And then he just said I should see the specialist again. Well, it takes at least a month to get an appointment with him, and I can't ever know when the sensation will be there again.

When I saw the gp the first of this year, I told him I was having extreme pain from time to time in my left elbow and shoulder, and that the pain only lasted for 1/2 hour to 3 hours, then it was gone as suddenly as it came. He claimed it had to be caused by the bad discs in my neck. Well, I've not had any such pains since then, and I never had them before they suddenly cropped up in January. But I recently had what seemed to be more than a simple reoccurrence of "tennis elbow" in my right arm, as the pain extended from elbow to wrist and the two middle fingers seemed as though they were held out by a strong rubber-band. When I told my physical therapist about it, on the way to see the gp, he said it sounded like MS symptoms. The gp said the same thing, but quickly added, "But you've had MRIs Rita......", meaning he feels now that not only do the neurologist's reports "prove" I don't have MS, but that the MRIs also substantiate I don't have it.

I tried to call my gp about the vibration sensation this week, but he won't even acknowledge my calls. He did the same when I called recently about increased problems with "palpitations". I'm surprised and confused, as he has been so good to return my calls in the past.

Also, I should add that when my optometrist diagnosed me with horizontal diplopia last year, he said that he felt something I already had wrong with my health had gotten much worse, or something new and very serious had developed. My gp was unwilling to try to determine what the problem was, so he referred me to the local opthalmologist. That doctor is incompetent too, because without thorough testing of me, he simply stated I couldn't have either vertical or horizontal diplopia - not true "double vision" anyway, simply because I don't "see" that I see double without the prisms in my lenses. The optometrist explained that my brain is, at least for now, compensating and helping me to only see single objects, but that if the disorder progresses, as he is certain it will, I'll end up with permanent double vision, and I believe him and trust him. The opthalmologist was also wrong in his opinion about what had necessitated the use of prisms in my lenses - he claimed I had to have had an extreme change in the lense prescription, etc. - none of which proved true when I checked my records at the optometrist's office.

I've had further MRIs done, and the former radiologist at the local hospital stated in his report that some of the lesions/plaques have disappeared and new ones have formed. He told me that IF I don't have MS (he's still convinced I do), that the disappearance of any of the lesions proves they aren't from mini-strokes, as such lesions never heal, and further that IF I don't have MS, I have something equally as serious if not more so.

I've had my IQ tested, and had apptitude tests done, and I show significant loses. Years ago I taught myself to weave on a large loom, taught myself to do tatting, and a number of other things. I find trying to learn even simple things a real challenge today. I also feel I have developed significant memory problems. Nobody seems to be able to answer if my mental deficits are due to the severe stress and pain I've experienced since 1999 because of my skeletal and other health problems, and because of the sleep depravation, or if they are due to the brain lesions that are obvious on my MRIs, or both. In mid 2000 the doctors etc. said my overall health was that of an 80 year old person, even though I was only 45 years old at the time!!

An occupational therapist did extensive testing on me in late 2000 and said I have "motor planning delays" (the signal from my brain to my hands to grasp something requires several repeats to get through), and that my scores on dexterity testing were "greater than 2 standard deviations below normal", and were in some instances off the scoring chart (in the minus section).

I find that right now I'm frustrated beyond belief, and in tears quite often, because of not having any answers; because of feeling the radiologist and the optometrist are right (again, he thinks I have MS too) - but not being able to find any "credible" doctor to assert that; because my symptoms seem to be getting worse year by year - I now often use a cane when my legs don't want to work properly and I need to walk, and my motor planning delays last longer and are worse overall.

Can any of you help me figure out what's wrong? Have any of you had the vibrating sensations, or the motor planning delays? Do any of you have to use prisms in your lenses? Have many of you noticed memory problems not associated particularly with age? Do any of you show IQ loses. Do any of my other health problems/symptoms sound familiar - either to MS or to another disease you know much of?

Thank you so much for listening. And again I apologize for the length. If any of you would care to write to me off-list, please feel free to do so.

May the Lord bless you all!!

Rita

March 14, 2004

Hi Rita,

I can attest to memory problems and they are very bad right now and have been somewhat distressing for awhile (I can see where one of those symptom journals would come in handy because it's all so vague and subjective when your memory isn't holding up). I used to have a 'freak' memory, and say the sort of things people would find either amazing or unnerving because they were just too obscure for the average person to retain. Now I can't remember why I came upstairs or where my husband said he was taking the kids for the afternoon. Sometimes it comes to me and sometimes it doesn't. I'm sure I have similar IQ deficits, and hope they will only be transitory.

I have virtually no tingling sensations ever which I guess would go towards ruling out MS, but I get the droppsies for lack of a better word. I don't know about numbness because my hands and feet are so darn cold all the time.

My take on it though is that lesions form in certain areas and the symptoms I do have are consistent with cerebellum lesions and I think the tingling stuff comes from (I think) a sensory tract lesion. It's odd in itself because I have the B 12 deficiency and tingling is also part of it but again, it hasn't been an issue. It happens only once in a blue moon.

Just out of curiosity, do you mix up words or find you can't get out the next chunk of what you're trying to say? I'm having a lot of trouble with that, as well as my typing has gone down the tubes but my handwriting is still pretty good.

March 15, 2004

Hello Rita welcome to the group.

I have had my Ford Ranger truck modified with hand controls since I got my MS in Aug of 99. I was happy when Ford did the hand controls for free since my truck was brand new. Ford and Dodge both have a mobility program for there new vehicles. I am making use of Dodges program now since our van is new.

About a year ago I could still drive a normal vehicle and one day drove my wife's Escort with the wife and kids in the car, I noticed my right foot was not responding correctly to do both the gas and brake. I pulled over and let my wife take over. I feel pretty good these day's and probably would not have troubles with the right leg like I did that day. Since the hand controls are free the first 6 month's after buying the van I plan to take advantage of there offer.

I do pretty good with my MS, It has helped to have a good family to make it easier. I am always happy to see my 6 and 14 year old jump in there to help out all the time. I really think I would have a tough time with my MS if I was still single. I was pretty active as a single and the MS sure would have cramped my life style at that time.

Welcome to the group and I hope you have made some new friends.

Bill

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