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Old 05-21-2009, 10:46 PM   #1
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What is happening to me?

I am 56 years old. Have had sinus tachycardia for many years. Also bradycardia and am certainly not an athlete.Background, history of breast implants in the 80's had a rupture, removed in the 90's when it was figured out the implants were the cause of my chronic fatigue, fog, rashes,hair loss, itching, joint pain, severe allergic reactions, heart palpatations etc. was diagnosed with mixed connective tissue disease, and sjogren's (positive schneer (sp) negative ana though. Once removed, I improved alot and was left with fibromyalgia and dry eyes. I learned to pace myself and worked part-time. Things ok, some days low bp, very tired, brain fog, but would bounce back. 6 years ago went through menopause. Unbelievable night sweats. I was having more episodes of weakness and fatigue. I was taking Pamilar at night for the fibromyalga as sleep study indicated woke up 60 times in 5 hours. I started having trembling at night stopped meds, still continued. 4 years ago was injured at work. Had wrist surgery 10 months after, back surgery 3 years later, as it took that long for workmanscomp to stop jerking me around.Diagnosed with osteroportosis, gave up actonal severe reaction, use Fortical. Take dioxgin for heart
This is what is going on. I have episodes of weakness. leg tremors, trembling, restless legs, legs get heavy, heels burn, toes sting, throat sometimes closes up (have Gerd) bladder spasms (no cancer in bladder but had gas in bladder) judgement off, I reach for a glass and knock it over, right side pain, normal cat scan, bloated upper abdomin, and feels like a vice around me, gone now but lasted for several months. Sweats during day now. I will forget how to spell a word and the next day I remember.Lost the vision for approximately 2 minutes in my left eye about 10 months ago. I just had two brain CT scans (can't have MRI) Multiple unusual calcifications in the left posterior-inferior cerebellum with possibly encephalomalacia. mild diffuse cerebral cortical atrophy out of proportion to my age. I get head pains in the back of my head. (I can't remember at the moment all my symptoms) First neurologist said I am fine neurologically, said since I can't have MRI then it doesn't matter if I have m.s as the injections work only 30% of the time and I could have alzheimers and end up like my mom but oh well nothing can be done go live life. Refused to do a spinal tap saying it was invasive. Ok bye to that jerk, second neurologist didn't have my brain scan to look at yet, said neurologically I was fine but did order the vsp? test which I had a few days ago. The visual one and the limb one. Waiting for result. Optimologist said eyes ok very dry, prescribed reclast. Had vison periphial test done. Left eye, was told to quit pushing the button just for fun. I said I wasn't I saw the lights. 10 errors, so it was done again. 100% but I told the tech I ignored the dimmer lights and pushed the button on the bright lights. Thought maybe this was the sjogrens getting more serious but rheumotologist said my ANA was normal so I don't have sjogrens. Diagnosed silica syndrome. Agreed that sjogrens can cause brain lesions but said I wouldn't be able to move. Sent me back to GI dr because my liver enzymes have been elevated for last 6 months. Bloated, weight gain, like water retention too. Can't handle hot showers anymore.
Anway, you get my drift. The neurologist will have my test results next week. I am kind of scared. I kind of think it sounds like M.S. but wouldn't the radiologist recognize the calcifications and link them to M.S.? Sorry so long. thanks

 
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Old 05-21-2009, 11:03 PM   #2
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Re: What is happening to me?

Oh and cramping. I forgot about that. I had it for several months. Blood work normal. Dr sent me to ER because my chest was cramping too. ER dr said I was hyperventialating. Only thing I was aware of I was sighing alot. He said that should be followed up. It was throwing my potassium off during the episode. It isn't bad now, like the adominal swelling and vice feeling it has toned down. THe bladder spasms drive me nuts. I stopped taking the meds, they don't help much and they dry me out more and I already panic if I can't get to water when I am thirsty. Oh and now I am thinking. I have reynauds syndrome, rosacia and I itch alot. thanks again

 
Old 05-22-2009, 05:15 AM   #3
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Re: What is happening to me?

Sorry Mel, your post is really REALLY hard for those of us with MS to follow, but I tried and attempted to read it several times.
You need a new doctor.

Pure and simple, its time to go see a new doctor who answers your questions and makes you comfortable.

I will tell you that every symtom you put up here is Sojourns to the T....and that not many of them are MS sounding..

The fact that you have been thru so much physically and surgically is enough to put your body into the shape its in.....time for a break. Time to start thinking happy thoughts and not concentrating so much on the what if's...

Honestly, the stress you are under can cause quite a few of these symtoms as well.

Can you find a doctor to start over with? Preferably a Neurologist who might also be familiar with Sojourns? Its not a common disease, and not alot of docs are ultra familiar with it- can the doc who dx you, also recommend a Neuro for you to see to rule out other diagosis?

I really wish you well, but I honestly think you are either taking too many drugs, or the wrong dose, thus increasing your anxiety...and, not being able to get straight answers is enough to drive anyone bonkers! Im not liking the answers you are getting, so Im sure you arent.

Please look into finding another specialist, one who makes you feel comfortable and takes the time to really talk to you- this might make a huge difference. And, in the meantime, remember, you do not have fatal diseaes, you arent going to die from anything you mentioned- and youve been thru so much already, your obviously a fighter! Try to take comfort in that and spend the next 3 days resting and trying to remain positive..
Okay??
take care of yourself.
N
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Old 05-22-2009, 07:37 AM   #4
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Re: What is happening to me?

Thanks for your responses MSNik. I confuse myself. I am only taking two meds, dioxgin and a nasal spray Fortical for osteroporosis. Do you have me mixed up with someone else's post?
I am seeing a second neurologist and she is the one who ordered the tests. She is pretty involved in ms. The first neurologist was the one who totally blew me off. I have Kaiser now, so I have to go through their process to get referrals.
I have seen 2 rheumotolgists through Kaiser and was disappointed in both. The second one said she would do a lip biopsy which may be something I have to consider. In my opinion, I find Kaiser specialists don't like to do much in ways of testing, so I was happy the second neurologist was willing to do some testing.
I didn't know there were neurologists who specialized in sojgrens. I thought it was rheumotologists. I don't think Kaiser has a dr who specializes in it.
Thanks for the response. I do still have the question is there a distinct look to the brain calcifications? Would a radiologist report that possible m.s. or sojgren's lesions instead of stating multiple unusual calcifications?

 
Old 05-22-2009, 10:24 AM   #5
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Re: What is happening to me?

Mel, no, I dont have you mixed up with someone else- I just had a real hard time following your post. For those of us who do have issues with information overload (as I like to call it) sometimes its hard to follow allot of info all together . My apologies if you thought I was confused about the information- I am!! Its MY MS thing.....

You are right, a Rheumy does usually see Sojgrens patients, however thats why I said you might want to make sure whatever Neuro you see is familiar with the disease....if they do not know much about it, they wont know what is Sojgrens and what isnt..

Lesions on the brain: These can be caused by ANYTHING! Migranes, former brain truama, a bump on the head, childhood diseases, even certain infections, can all leave lesions...lesions are scars. The size/ shape and placement of them ususally is indicative of MS; however, not all patients with MS have lesions. MOST DO,but not all....and those lesions can be very tiny. If you cant have an MRI (why cant you again?) then its more then likely not going to pick up a lesions for MS with a ct scan. CT scans used to be used, but honestly, they arent the test of choice for ruling out MS. Also, since there is no test for MS, its all about ruling out everything else...you have a ton of testing ahead of you if this new Neuro thinks it might be MS. The line "unusual calicifations", is not usually used with MS...(by the way) it makes me think the radiologist was seeing something completely different.

im glad to hear you have another Neuro- hopefully this one will steer you towrads some answers.. I hope you feel better soon.

Nikki
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Old 05-22-2009, 11:52 AM   #6
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Re: What is happening to me?

Thank you for clarifying about the lesions. No apology needed. You can tell by my post I have difficulty expressing myself in a way that is understood. Sometimes I feel so out of it. I understand about the overload. Fibromyalgia does that also.
The reason I can't have a MRI is because I was burned in one. I had jaw surgery years ago. I have titanium plates in my face. It should not have been an issue but somewhere there must have been some metal, perhaps in the drill bit used during surgery. My face overheaded and I had a big blister under my lip. It was not a pleasant experience feeling like I was cooking. I know I have lost a valuable tool not being able to have a MRI.
The only reason I had mentioned the breast implants is because women I know who also had them ended up with m.s. There were other chemicals used in implants besides silicone such as toluene, platinum,formalgyhide etc that can cause neurological symptoms. I know too that a stroke which is a possiblity can cause lesions too. One thing mentioned in the first report was a tape worm infection in the brain. Whatever, it is, no one knew. With the symptoms I have, I was starting to wonder about the m.s. I lived with my diagnosis of sjogrens for 20 years with just the dry eye and mouth, not knowing there was more to it and not needing to. Then when things started happening, I started looking up information and thought sjogrens was a consideration too. I mentioned the back and wrist surgery only because I know a trauma can cause flair-ups. I don't have any history of headaches. Only the last 6 months have I started having head pains in the back of my head.
Thank you again for taking the time to respond. I will try to stay "focused" and not wander off in my posts. lol

 
Old 05-22-2009, 12:17 PM   #7
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Re: What is happening to me?

Sweetie, you can be as unfocused as you want! Its an MS thing to be "all over the place" as well and I try hard, to communicate effectively. Being that Im a sales rep, its sometimes especially hard.

Im sorry to hear you were burned. Thats really unfortunate, the MRI being such a wondeful diagnostic tool....but in the old days, before MRIs they had other ways to do tests, and Im sure thats what they will do for you.

I will be the first to say, you have allot going on. Be careful what you read, especially when it comes to self diagnosing yourself. There is more bad info then good info on the net, and people who read too much tend to get alittle ahead of themselves in figuring out what is going on...sometime, the anxiety of trying- can cause additional problems.

I wish you well- and keep us posted of what your new Neuro says...
have a good weekend.
Nikki
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Old 05-22-2009, 08:09 PM   #8
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Re: What is happening to me?

The neurologist called after looking at my brain scan. She wants to repeat the scan in October to see if there are any changes. She doesn't know what the calcifications are, didn't think it looked like ms, didn't think it was a stroke. My vision test was normal the test that measure the length of time for the brain to respond was not normal on my left side but she can't tell if it is in the brain or the spine. She did say she would do a spinal tap if I want, either now or in October after the ct scan.

 
Old 05-23-2009, 06:39 AM   #9
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Re: What is happening to me?

Hi Mel. I think you should wait. Ive had sevearl Lp's over the years, they arent the worst test to have...anxiety will kill you, but the test itself Ive never had a problem with...the issue is: not everyone who has an LP gets anything out of it...not everyone with Obands have MS and not everyone with MS has Obands...all they are is an indicator that there is something autoimmune going on- and you already are dealing with that. There is a chance that with you- its going to be positive for Obands, and youre still not going to get a dx out of it.
I would take those scans to another Neuro for a second opinion. Thats my thought....preferably an MS specialst, not just a Neuro...an MS speicalist might have other ideas on how to proceed and it couldnt hurt...repeating the tests in 6 months is also a good idea; I get mine done every 6 months even now- because its important for me to know if the Rebif is helping or if Im wasting my time.Also, FYI, ive never had a normal test on my eyes or my brain activity. Its always been "not quite right' on my right side...and yet, it means nothing in the grand scheme of things...dont let that frighten you.
Hang in there.
nikki
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Old 05-23-2009, 09:39 PM   #10
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Re: What is happening to me?

what are obands?
The neurologist I am seeing serves on the advisory board for m.s., that is why I picked her within the Kaiser system even though she wasn't local.
I am thinking of going ahead and have the tap done. I was watching all the shows on HBO about alzheimers and some of the benefits of what the tap shows, makes me want to have it since I can't have a MRI. I was complaining that Kaiser didn't want to do anything after my experience with the first neurologist and now I have someone who is willing to do some testing. As my scan also indicated abnormal brain shrinkage for my age, I would like answers to that. My mom has very limited short term memory.
The way I look at it, even though I am nervous about it, if it gives me some answers then I should go for it. Even if there are no changes in the scan in Oct. why do I have these symptoms? I won't have any answers without this test.

 
Old 05-24-2009, 07:17 AM   #11
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Re: What is happening to me?

Obands or OligoClonal Bands (Gamma Globulin Bands) are found in CerebroSpinal Fluid. They suggest certain AntiBodies. These antibodies show an Immune response to a nonspecific CNS Antigen. Many people with MS show this antibody, which can only be derived from the Central Spinal Fluid, and thus with a Spinal Tap (lumbar puncture- same thing).

Things like abnormal brain shrinkage, or even early althezmers, doesnt show up on spinal fluid. Many diseases can be ruled out. Red blood cells shouldnt be present- of course infections shouldnt show up- in some cases Lyme can be checked as well- so in my opinion, its not a bad test to have run, but its not a definative test for MS. If you dont have Obands, it doesnt mean you DONT have MS....and if you DO have OBands it doesnt mean you DO have MS.

If you like this doctor, and are comfortable with what she is seeking by having the test done, and your insurance covers it, by all means- go for it! Like I said, Ive had several, for different reasons, and never had a problem having one. I was back at work the next day- however, be sure that you understand what she expects to get out of it and why she wants to do it...

Nikki
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Old 05-24-2009, 08:33 PM   #12
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Re: What is happening to me?

Nikki, thank you for the explanation. I figure if the dr has the fluid from my spine then she might as well check it out with as much testing as possible. I actually do like her. She is patient, doesn't seem to mind some of my silly questions and doesn't ridicule me, nor does she have "that" attitude.
I have been watching HBO's presentation regarding alzheimers and it had a segment regarding an elderly man who they showed having a spinal tap. Apparently they can check the beta amyloid for alzheimers and though it isn't 100% accurate they can check the protein for alzheimer's patterns.
I may not get answers but it is better than the what ifs. If I get a diagnosis at least I know what I am dealing with. It's the not knowing that is getting to me. I know my body and something is out of whack as listed above with some of my symptoms.
Someone mentioned on another post about crying. It is good once in awhile to have a cry, it rids of certain chemicals (can't remember what they are at the moment) but I allow myself to have a little pity party now and then, and I am the guest of honor and then I pick myself on for the next round of battle. Having people to share their knowledge and experiences is so helpful. Yea internet.

 
Old 05-25-2009, 09:31 AM   #13
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Re: What is happening to me?

Mel, you sound like you are handling this well and are in good hands. The crying thing- I have a limit on that. Crying in short doses might be cleansing for the soul, however with MS- crying cant start a whole host of symtoms for me which spiral out of control, making me wish I was tougher and ignored whatever it is that brought on the crying jag. I try not to cry- ever. For me, its wasted energy which does me no good....for others it might be a cleansing experience, but Id have to beg to differ personally.

Sounds like your doc is doing everything she should be- and the fact you like her helps tremendously. Let us know how your next appt goes. Happy Holiday.
Nikki
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