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Old 05-02-2010, 04:14 AM   #1
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Does this sound early sx's?

Hi Everyone,

I've had issues over the past two years with something unrelated to MS and have positive ANA test for autoimmune. That issue is still in process of diagnosis. I did read though that symptoms of the other disease overlaps and mimics MS or vica versa. It's Sjogren's Syndrome. As MS is also autoimmune related and some of my symptoms appear in the list of MS symptoms I'm wondering if any of this sounds familiar to anyone.

First of all can you tell me if there are subtests based off the ANA which would correlate with MS? I couldn't find any info on that internet. As MS is autoimmune I thought there might be but I don't see ANA and the subtests noted in anywhere when diagnosing MS.

Here are my symptoms... about 10 years ago I started experiencing numbness in my feet. I also started experiencing migraine aura for the first time. One migraine attack was so bad it left one side of my face numb. The numb feet and migraine aura symptoms have never gone away. The migraine aura have become much more frequent - sometimes daily for a week straight but I don't always get the headache. They do leave me mentally foggy though.

About a year ago I had my first episode of feeling imbalanced. The room wasn't spinning - I just couldn't get my bearings in me straight. I didn't feel like I was spinning inside - I just can't get my positioning straight? I went to ER but no MRI was done. They gave me an EKG... I have been experiencing this quite frequently now. When I walk I need to stop walking or I feel like I will fall down. This isn't a constant thing but does happen frequently.

Now I am getting tingling in my hands and my forearms can feel like I have lead weights in them. I had also had an episode a few weeks ago where I got this random ache in a muscle next to the tibea. It was not from exercise. I was laying down when it happened out of the blue. It lasted about an hour or two and then went away and I haven't had it since. The tingling in my hands and feet occur daily but the heaviness in my arms don't.

I have also been getting stabbing pains in my eyes. I can see fine but my eyes sometimes just hurt. I also get an occasional tremor in my thumb. It lasts on and off for a few days then goes away for months. I've had that for about 3/4 years. The last symptom is tinnitus. I've had this for about 6 months now. It never goes away.

Does this sound like something that could be early onset stages? It's goes over such a span of time that it leaves just enough room for doubt but at the same time, questionable?

The only symptoms I have constantly is the balance issue, numbness in feet, tingling in hands and feet and tinnitus. The rest is random.

Thank you so much for your time.

Last edited by springgrass; 05-02-2010 at 05:34 AM.

 
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Old 05-02-2010, 07:32 AM   #2
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Re: Does this sound early sx's?

Hi, I'm not familiar w/the condition but I'll have to google it. My only feedback is that you should have an MRI done as it does all sound very "ms'y"-- Being new to the disease, I can base it partially on experience and primarily on what I here other MS'ers talk about. Not sure if the syndrome has treatment, but if it's MS, you could get on a treatment plan asap to help prevent future episodes. I had a lot of the balance issues you discussed over a 2 month period and still have them sporadically--but I've improved tremendously and it just took time.

 
Old 05-02-2010, 08:13 AM   #3
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Re: Does this sound early sx's?

Hi there. I actually know quite a bit about Sjogren's syndrome. And, the person I know who has it went thru quite a bit of testing before they diagnosed it as Sjogrens...

However, Sjogrens's is NOTHING like MS and your symptoms do resembles MS in many ways...is it possible that you were given a wrong dx? Do you have the salvitory problems and dry eyes which accompany Sjorgrens?

Of course it is possible to have both disases....you should defintaely talk to a Neurologist who specializes in MS right away and discuss the possiblity of either having both, or a wrong initial dx...

Sorry you are going thru all this.
nikki
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Old 05-02-2010, 10:35 AM   #4
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Re: Does this sound early sx's?

Thank you so much for your replies.

I don't have a dx for Sjogren's at this point. I have further tests. Some of the sx's do overlap as SjS does affect CNS. The rheum Dr. I consulted said that when presenting with it at my age, (mid 40's age onset) that what I have now is as bad as I'll ever be. Meaning, people who get SjS at my age don't progress to the more dibillating symptoms which would include CNS involvement. I was 47 when I started with the salivary gland issue and I am now 49. I was in my late 30's when I started with migraine aura and early 40's when the numbing feet started. So the CNS or brain/migraine issues started well before the SjS symptoms did.

That led me to question why I am getting CNS sx's. I was thinking it could also be migraine vertigo. I read on some boards there where people did also get the tingling.

I guess I do have get the MRI. I read here where one should get it with and without contrast - that's good to know. Can this be done in the over sized MRI machines? I have problems going into the smaller ones. I think I had read where a person had to have something like a mask put over their head so they wouldn't move? Is that how needs to be done? I don't think I could do that...

Are there any blood tests for MS seeing it's considered auto-immune?

I'm glad there are drugs to slow progression of MS. SjS only has drugs to treat sx's but doesn't necessarily slow progression.

Last edited by springgrass; 05-02-2010 at 10:38 AM.

 
Old 05-02-2010, 11:12 AM   #5
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Re: Does this sound early sx's?

Hi, that makes more sense now that you mention the salivary and eye issue as I didn't catch that in your first note. I too agree w/Nikki that based on your first note it sounded more ms'y and less of the syndrome. An MRI can also show migraine issues too I believe. Don't fret the MRI-- I feel I am claustrophic too but I did just fine. First off no matter how far you go in, you can clearly see the opening by your feet and the room so I felt that worse case I could push myself out. Second, have the tech talk to you through it. Each film takes a minute or two so he/she will talk between each one so it goes really fast. The mask wasn't a mask-- one time I had a type of apparatus and one time I didn't. I wouldn't call it a mask. It was a wire type device. I didn't feel it constrained me really that I still had movement.

 
Old 05-02-2010, 11:45 AM   #6
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Re: Does this sound early sx's?

Springgrass,
No, there are no blood tests for MS. MS is diagnosed by ruling out other things...even the spinal tap, the ANAs for auto-immune, arent conclusive....all that tells you is that you have an auto-immune disease, not which one. The reason its important for MSers, is it rules out other infections, such as Meningitis or PML, both which present much like MS.

the MRI is a must for MS. MS shows up as lesions on the brain, in very specific very clear patterns and places. Only a skilled Radiologist or Neurologist can look at a MRI and read it for MS. The "mask" which you describe isnt a mask at all, but a contraption which holds your head steady, usually with ear pieces on the side so that your head doesnt move. Any movement can ruin the films...you asked about an open-air MRI. Thats not recommended for MS pictures...actually they arent recommended for any films of the head. They arent as clear.You can take Xanax or something for anxiety before the test, to take the edge off...and as Jodi said, communicating with the tech, letting her know you are fearful, will help you to get thru it because they will talk you thru the entire test. I use music sometimes to take my mind off the noise- mostly I just sleep! Ive had about 10 of them in the past 5 years...

Its possible you have both diseases going on...or that your migrane issues are contributing to the MS like symtoms. Many neurological issues present like MS, which is why its so hard to diagnose.

Keep us posted.
Nikki
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Old 05-07-2010, 02:28 PM   #7
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Re: Does this sound early sx's?

You sound way too much like me. For the past 16 years I've been hearing from every doc I've seen that I probably have MS. (Documented bladder retention, bowel dysfunction, nerve pain in feet they said was diabetic neuropathy, balance issues and leg weakness, migraines, vertigo, etc., etc.) Well, last August I began to have brand new headaches out of the blue and my new primary sent me to a neurologist here in our new town (we're retired military) and guess what she found? Tension headaches and a spinal cord injury!!! I fell off a pony and have been trying to get a diagnosis all this time. I only tell you this for one reason. The doctors seemed to have tunnel vision with the MS diagnosis. They probably did five mri's of my head and two or three of my lumbar and never looked at the thoracic area. I just had surgery. Because it is so old my nerve damage is probably permanent. Just wish I had insisted they look at other possiblities way back when.

 
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