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Help no one knows whats wrong with me or seems to care
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Help no one knows whats wrong with me or seems to care

32 year old healthy just history of migrains. A few years ago I developed sever fatigue, the kind where your afraid to walk to the bathroom because you my be stuck in it or between for hours, driving to the store takes so much out of you that you cant go in or drive home. At first thought it was the flue minor body aches, after 2 days of not developing any other flue like symptoms afraid it was going to be a hard hitting long lasting flue, go to the doctor recieve tamiflue, took one dose knocked out for over 12 hours woke up feeling confused disoriented. Decided not to continue with the medication. 2 weeks go by no improvement so I decide to fight through the fatigue, in doing so I find trying to put keys in a lock my hands shake so bad that I drop the several times (frustrating to work so hard when so weak) still unable to make it to the grocery store, unable to have full conversations and noted stuttering which is completely new to me, unable to concentrate, remember anything, my body feels so weak it feels difficult to move my hands breath, anything, also an irritable bladder, difficulty finding words, truely frightning

At this point sure Im dying I demand my doctor do something, sends me for full lab work up sleep study, neuro, find lesions bilat white matter to frontal and occipital lobes. Knowing my city I request to be refered to stanford and my primary agrees that it seems like ms and wants the best treatment. Stanford does MRI of my neck to check for demilination and lumbar puncture, labs show pos. for sjogrens, stanford say that explains it all sends me home, no treatment yeah not ms.

I still have times of fatigue but not anything like the one episode which did last more than 6 very long weeks, maybe a day and not that intense. I still have neuro symptoms of feeling like i just walked off a boat, tremors, sometimes i feel like water is dripping on my hand but its dry, if i sit in a chair after 15 min my legs fall asleep, my hands and arms frequently fall asleep. I have had 2 children without coplications all before the odd fatigue, could it have been a stroke? this did happen the end of may and noted that it was worse on really hot days and better in evennings after the sun would go down along with the temp.  What can I do
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16 Comments Post a Comment
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1658667_tn?1310094982
Hi Heljell-
We haven't met yet so it is nice to meet you here. You have so many things going on and I can imagine why you are so frustrated. It is good that you have a primary doctor willing to listen to you and help.

Can you go back to your pm and keep pushing for help? It seems bizarre to me how many doctors see all these symptoms and just send you home. While there isn't any treatment for Sojgrens, it seems they would be addressing your symptoms.

Just keep pushing you doctor for help. In these days of HMOs it seems we have to be our own best advocate.

((Hugs)) Laural
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1394601_tn?1328035908
I agree with Laural.  In fact, I would ask to see a second neuro for another opinion.  Something is wrong...very wrong.  I don't understand giving a dx and no treatment plan.  It doesn't sound like the neuro is even taking time to treat his patients.
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572651_tn?1333939396
Hi heljell,  
Welcome to the forum here.  You may very well have Sjogrens.  It is possible to have more than one disease at a time.  But Sjogrens would not explain the other symptoms you have.  

The legs falling asleep when you are sitting doesn't fit into MS or really much of anything neurological - that sounds to me like a circulation problem.  The same with the hands and legs falling asleep.   MS is a disease of the central nervous system.

But keep in mind I am not a doctor or medical expert.  

All this said, you have other symtoms (symptoms) that can't be easily explained and it does sound like you need to find a second neurologist and be reevaluated.  I hope you can find a good one to walk this journey with you.

Please feel free to come back and ask all the questions you might think of.

be well, Lulu
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1394601_tn?1328035908
I dunno Lulu but my right leg (the side of my body that MS has attacked) falls asleep all the time when I am sitting.  I know there is no circulation problem because too many tests have been run.  If you remember it began with my foot then that same leg.  I have been cleared by vascular surgeons.  It is possible that it is caused by the way I sit....but it never happens in my left leg.
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198419_tn?1360245956
Hi there,

Welcome! A lot of what you describe gives me flashbacks - especially the confusion, fatigue, conversations, speech issues, etc. Though they say no MS, Sjogrens is a big mimic.

You should not have been diagnosed with something and then sent along your way w/no follow-up, or plan, or understanding. If the dx holds, you may find this video educational...

http://vimeo.com/16671907

Was no follow-up scheduled?
Sorry for what you are going through,
-Shell

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1559533_tn?1308952161
I have seen a second neuro found hyper reflexes, and no changes on my MRI great but sent me home with his best guess that its anxiety and if I have a return of symptoms to try to get in during an attack so he can see it first hand. I saw a rhuemy in fresno dismissed sjogrens within 2 min of seeing me and acted irritated and said he could do a painful lip biopsy but I dont show any symptomps of sjogrens.

I think I could live with most of the stuff I go through but the weakness. I am a very active person I work 12 + hours on my feet just about running at work, I do my own yard work lawn edging everything, all the house work, people who know me think its amazing all nthe stuff i get done myself. Its soo hard to go from that to not being able to do much more than walk from one room to another and feel like needing a nap.

I feel like I have done better since I started vitamin d and b12.

Is it best to rest when that weak or push through it.

I dont even care about a diagnosis I just need some sort of direction on what to do and what not to do.

I have not seen any link to glutten but I could be wrong.

I truely thank you all that read and respond, It helps me feel less alone.

My friends and family dont get it, I think cause I dont look as bad as I feel
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338416_tn?1413581329
Bilateral white matter lesions and an opinion of Sjogren's from Stanford should warrant more than a diagnosis of anxiety.  I would seek another opinion.  And I would run away screaming from anybody that suggests it's anxiety.  That's a lazy neuro's diagnosis, not somebody who's doing their job.

You need full records from Stanford of the tests they ran, and you'll need to talk to a neurologist.  Stanford will probably want 20 bucks, but it's worth it.  Especially if you can get a disk of the MRI, so you can take it to your new neurologist.  You've got to follow up and do a lot of your own legwork.  This is unfortunate, because with diseases like MS and Sjogren's, you end up with some cognitive problems and fatigue.  It makes it really difficult to ask the right questions and know when the doctor's handing you a line of bull, because by the time you've absorbed the information, you're outside and the appointment is over.

Well, I don't know if this will help you - I didn't see any listings for a neurologist in Fresno.  But this is a site that rates neuros (good or bad) and you can post, asking about neuros in Fresno and if anybody knows of a good one. I'm not sure how active it is, and you'll need to create a username and login.  There's also this forum, and the MSWorld forum, where you can post questions.  They're both pretty active.

http://www.msneuroratings.com/forumdisplay.php?f=203

Good luck!  I know this is tough.  
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1559533_tn?1308952161
Has anyone gone gluten free!
If so has it been helpful?
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Avatar_m_tn
They must have found Sjogren's antibodies elevated to have given you this dx. Did the Stanford doc explain or verify this? Do you have copies of your labwork results?

It's very frustrating. I would think they would have initiated treatment. This is so odd. However, we have a lot of those types of stories here.

Sjogren's can mimic MS. A rheumatologist is basically who handles Sjogren's treatment. Methotrexate, plaquinil and other meds commonly used for systemic autoimmune diseases are used to control it.
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338416_tn?1413581329
I find that a high protein diet with lots of raw vegetables and fruit works best.  I wouldn't recommend cutting anything out of your diet, unless your body has a problem with it.

For example, I have a problem with fats, because of my gall bladder.  I avoid beans, because my stomach doesn't digest the skins all that well.
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Avatar_f_tn
I just want to comment on a 2nd opinion neuro that I experienced.
I went to first neuro but he was so focused on carpel tunnel (that I didn't have) and so I went to a 2nd neuro wanting a 2nd opinion, and he looked at me and said "if you think I am going to repeat all those tests (not that many had been done, only 2), there is NO WAY......
Needless to say, I didn't stick around too long!  Especially after he told me it was alzheimers, Just by talking with me no less.........knew I shouldn't have shown up with my time line.....
end of story being he eventually said, No, I didn't have alz.....
so, just to warn you not all neuro's are not willing to come behind their comrades and do their own thing.

I hope you find out what is wrong with you!
SarahL
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1559533_tn?1308952161
Stanford did find elevated esr and sjogrens antibodies, MRI of brain and neck nothing new, same lesions on my brain. Bilat so that would be odd for ms, they think the lesions are from my long history of migrains due to the size shape and area. With the sjogrens told me its just symptom management and the drugs have more side effects than good sometimes. Trying not to get blown off I pushed more and asked when should I be back for follow up and said to me no need.

Found a rheumy and within the 1st 60 seconds I dont think he even looked at my face stated its a false pos about 80% of the time they are. I dont have dry eyes, dry mouth, thats of any problem. Said Its all symptom management anyways. I pushed again wanting answers, he seemed irritated at that point and said " we could do a painful lip biopsy to confirm its negative."
At that piont and now I really dont have symptoms that go with sjogrens It just doesnt seem to fit.

Second neuro found hyper reflexes, at this time I was almost completely recovered from my last bout of symptoms "must be anxiety" he said. repeated MRI of brain and neck, nothing new.
He tells me thats great I dont think its anything to worry about its 3 years later mo changes.I push for answers and he says " My best guess if I had to make one would be anxiety, but come back when you are having symptoms its hard to say unless I see it for myself."

My primary that sent me to him did note weakness which was weeks before I saw him. She also  found quite low vitamin d levels and b12 in normal but on the low side. I have started taking both supplements and no symptoms since. But I have gone a year before without symptoms, when I say that symptoms that last and scare the hell out of me. I frequently have periods of feeling tired, but I still can force my self to get up and do stuff, I typically blame that on my stressful job, long hours on my feet.

So here I am with a dx of anxiety, a psych nurse of 5 years, are you freakin kidding me. I have never seen those symptoms with anxiety alone. I know what anxiety is have felt it from time to time. When Im having my symptoms do I eventually start feeling axious....yes it scares the hell out of me that I wont be able to go to the grocery store, work, care for my family, my home. Im a single mom its just me, if Im bed ridden who will take care of things. Who wouldnt become axious under those cercumstances.

Am I looking to be sick no! Im looking to keep from being sick. Do I expect to be fixed no! I just want to nip it in the butt and live as healthy as possible as long as possible. But I need to know what is wrong to find the right people to help me manage it as best as possible.

Yes Im guilty of avoiding going to the doctor. If i know whats wrong and I know what I need sure I will go like strep throat.

So here I am all I can do is vent and scream!
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1559533_tn?1308952161
Oh let me say this, at the peak of my syptoms (symptoms) I have never been seen by a doc, for 1 I dont have the strength to go, call, or drive. At those times it is truely survival, its all I can do to go to the bathroom, feed myself and stay hydrated.

Once Im able to get beyond that piont and call I cant ever get in untill my symptoms are gone or mild.

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755322_tn?1330272714
Keep on looking for a different opinion. It took me 4 Neurologists to get a diagnosis. Thank goodness I found one who cared and who I can communicate with.

One has to advocate for one's self with these diseases as there are a ton of lazy doctor's out there who just want to send you off with a vague diagnosis of depression or anxiety. I would be anxious too, and was, trying to find out whats wrong with me.

Hang in there and keep on keeping on!
Cheers,
Jessica
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Avatar_f_tn
Hang in there, I agree with Jessica, there is a ton of lazy doctors out there........
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1559533_tn?1308952161
I just hate seeing a doc giving them the respect of being educated enough to do their job and walking out empty handed, It makes me feel robbed. I just payed you to give me a load of crap!

I just dont know where to go from here?
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