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Old 05-21-2009, 10:22 AM   #1
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Concerned, Confused, Need Help.... MS Questions! - Western PA Pittsburgh

I write because I want to find an MS specialist in the Pittsburgh, PA area, and/or some help in diagnosis, etc.

For the past year, I have been experiencing a wide array of strange symptomology.
I already have been diagnosed with Rheumatoid Arthritis and Celiac Disease. (The Celiac may be of the
unresponsive, Refractory nature...we do not know yet.) However, I have been gluten-free for awhile now,
and my arthritis has calmed down substantially and is pretty much in remission aside from an occasional flare.
I am worried that, with these 2 autoimmune conditions, there may be a 3rd lurking within and going undiagnosed!

I have been extremely ill and a lot of the symptoms match up with those of MS. I am only 25 years old and have taken
a medical withdrawal from graduate school, and, in March, took a temporary medical leave of absence from the school where I work. I have even considered going on disability, as my symptoms are sometimes extremely debilitating.

I write because I want to find an MS specialist around here, instead of a general neurologist, or just some help and answers. I have had 2 brain MRI's - one in Nov. and one last week - both of which
are clear of lesions and abnormalities. However, while this is a relief, I am still concerned about my symptoms and
wanted to know if it is possible to have a clear brain scan early on if you do have it.

All of my symptoms are as follows:
Severe and Debilitating Fatigue
Constant Tinnitus
Random pains and aches
Cognitive difficulties (forgetting things, unable to concentrate, stuttering over words, etc.)
Severe mental fatigue/brain fog (feeling "out of it")
Stumbling over words
Clumsiness
Tingling in hands/feet
Loss of sensation in feet
Slight orthostasis
Feeling weak
Sometimes have to "concentrate" to swallow (?)
General overall discomfort
Daily migraines
Shooting pains in head
Always freezing!
Sometimes shaky
Blurry vision (a newer symptom)
Hazy vision (also newer)
Damage to central vision confirmed by field vision test (but thought to be caused by Plaquenil use in the past)

Despite having Celiac, I barely have any digestive or gastrointestinal symptoms. I used to get nausea every morning but it went away with the GF diet. My only GI symptom is constipation which I've battled off and on through my life.

Most of my symptoms could overlap with either the Celiac or Rheumatoid Arthritis. However, the Neurological ones seem odd. Again, they could be from the malnutrition/malabsorption factor of untreated Celiac, but I don't know.

My last test showed high gliadin antibodies (celiac) and a high rheumatoid factor if that is relevant. My vitamin levels are normal and I was tested negative for Sjorgen's or Lupus. Though it could be fibromyalgia that would only explain some of my symptoms.

If you could let me know what you think about my situation I'd appreciate it. While I was relieved that my brain MRI was clear, I'm also just frustrated and worried that I'm not getting better and nothing is helping me at this point.

I should also note that my aunt has MS...I do not know if it is genetic.

If you could offer insight and/or recommend me to a specialist, I'd appreciate it. Right now I'm seeing a neurologist, but I'd like to work w/ someone who specializes specifically in MS.

I doubt I have MS b/c of the clear MRI but better safe than sorry. I'd feel better with a confirmed "no, you don't have it!" or a definite answer either way, really, so I can get on the path to treatment and wellness, and continue on with my life! Would it be worthwhile, at this point, to get a spinal tap? What if my neurologist does not suggest that - would it be prudent to inquire? I don't want to appear pushy or like I'm just being a hypochondriac! I'm just so tired and in such pain and sick of it!!

Thank you!

PS: I would also like to add to my list of symptoms that I have a history of Bell's Palsy, as well, if that is relevant, and sometimes suffer from facial pain and sometimes tingling.

 
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Old 05-21-2009, 04:47 PM   #2
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MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Concerned, Confused, Need Help.... MS Questions! - Western PA Pittsburgh

A clear MRI does not mean you do not have MS. A check with your local MS Society or MS Association will allow you to locate a MS Specialist. Whether or not you have MS, a MS Specialist will be able to run tests and at the very least, determine if your concern is a neurological malady.

Some families may have generational MS, but there is nothing that points to a genetic link. Your genes may provide a likelihood for getting MS due to a genetic trigger. Many studies are still looking at a viral origin. If true, then genetic codes can be passed down which make the person susceptible to the virus and the subsequent MS development. At this time it is still conjecture and there is no cure.

A MS specialist will be able to differentiate between the symptoms of your current condition and ascertain whether any or some of your symptoms are MS related.

Stay positive!!
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Old 05-22-2009, 05:04 AM   #3
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Re: Concerned, Confused, Need Help.... MS Questions! - Western PA Pittsburgh

Im bumping this back up for you in hopes that our resident Pittsburgh Guy will see it and tell you who he is using for MS....I live in the Philly area, and can help you here, but lets see if he responds.
I agree with Jayhawk that nothing means you dont have MS...MS symtoms sometimes show up sooner then the tests reveal; however almost every single symtom you listed could be anything! Including celiacs and arthritis type symtoms. I wouldnt flip out and assume that you would have another autoimmune disease as well, and quite honestly, that would be pretty rare. THe fact that your other family memeber has MS doesnt affect your rate of getting it.
You can always call the MS society in Pitts and see if theyll give you a referral for a doctor, be specific if you want an MS specialist and not just a neuro who deals with MS patients...
Try to relax, none of the symtoms you mentioned scream MS...
N
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Old 05-22-2009, 07:07 AM   #4
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Re: Concerned, Confused, Need Help.... MS Questions! - Western PA Pittsburgh

Thanks for the reply, MSNik! I am by no means panicking, but, I'm just frustrated at a year of suffering w/ no "certain" diagnosis. I've had the RA for the vast majority of my life, and while some of the symptoms I'm experiencing could be that, it just seems odd that I've never experienced symptoms like this before. As for the Celiac...I know that I have it, but my case is odd in that I have little to no GI symptoms & I'm definitely not improving on the diet. I think this is why they are looking for something else -- autoimmune or not. I never would have thought it was MS, b/c I didn't know much about it, regardless of my aunt having it - and still don't know a ton about it - but, when they started mentioning it, I grew concerned b/c I do have many symptoms. But....as you know, so many autoimmune diseases have similar and/or overlapping so I'm not freaking out as much as some people would. It's just....I feel like my life is on hold...and so if they decide it is unresponsive, Refractory Celiac...then I want to get on a course of treatment. I don't think my Neuro symptoms are from the RA. I'm praying it isn't MS but if it were I would face it just like I face all the other stuff. It's difficult "doing everything right" but not improving. That's the only reason I worry that it's something other than CD and/or RA but hopefully, if it is, it is something mild. I also do find relief in that the MRI was clear....although I know that sometimes that doesn't mean anything. We shall see. I'm hoping to find a local MS specialist. I've emailed the MS Society of Pgh and am posting on here in hopes to find one. Thanks so much for your advice and your reassuring and helpful words! enjoy the long weekend!!

 
Old 05-22-2009, 07:10 AM   #5
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Re: Concerned, Confused, Need Help.... MS Questions! - Western PA Pittsburgh

MSJayhawk - thank you for taking the time to reply. I am trying to get ahold of the local MS Society. Do you think it is prudent that I would see a specialist or am I overreacting? A viral origin of autoimmune diseases would make sense b/c I've had virus in the past. That is interesting that it isn't directly genetic but it could make you more susceptible. You sure seem knowledgeable! Thanks for writing. I'll let you know what happens. BTW - what types of tests would an MS Specialist run? Out of curiousity? THANKS!!! Enjoy the long weekend!



Quote:
Originally Posted by MSJayhawk View Post
A clear MRI does not mean you do not have MS. A check with your local MS Society or MS Association will allow you to locate a MS Specialist. Whether or not you have MS, a MS Specialist will be able to run tests and at the very least, determine if your concern is a neurological malady.

Some families may have generational MS, but there is nothing that points to a genetic link. Your genes may provide a likelihood for getting MS due to a genetic trigger. Many studies are still looking at a viral origin. If true, then genetic codes can be passed down which make the person susceptible to the virus and the subsequent MS development. At this time it is still conjecture and there is no cure.

A MS specialist will be able to differentiate between the symptoms of your current condition and ascertain whether any or some of your symptoms are MS related.

Stay positive!!

 
Old 05-22-2009, 12:23 PM   #6
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Re: Concerned, Confused, Need Help.... MS Questions! - Western PA Pittsburgh

Hi MsNik aams;

I'm sorry I havent signed on recently so I just caught your posting aams. I just replied to another one of your postings and stated that UPMC and AGH both have excellent MS Centers. I personally go to the UPMC in Oakland. I don't think I am permitted to mention online here any specific Drs by name. if I'm wrong, someone let me know. ( I got scoiled once for posting that was too specific. SMACK). I'll check back later this evening. Take care all.

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