Frustrated in Seattle

[unschooler2]

Hello all,
My story begins on March 17th of 2010. I woke up that morning with chest pain and left arm pain. I went into the doctor to be sure I was not having a heart attack. Everything came back clear. My pain did not go away so I was suggested to see a neurologist.

My pain changed to severe nerve pain with heat sensitivity mostly in my left arm. I had episodes of stuttering, vision disturbances and falling down. A full Brain, neck and spinal MRI was ordered. At that time it was looking like MS. The MRI results came back and the radiologist made a notation that it looked like a demylinating disorder. But none of the medical doctors agreed 100%. So they wanted to rule out other possibilities so I went to a endocrinologist to rule out my thyroid was causing this, then I went to a rheumatologist to rule out any of those disorders. I have been to every other doctor you can think of.. They all say it looks like MS but the MS doctor say not sure... grrr

Well it is now 2+ years later and I am still in limbo with an official diagnosis. Since January 2012 my symptoms have began to get worse, I have constant nerve pain in my arms and now it is in my legs. I am having severe muscle spacticity and a pains as well as problems with my legs wanting to work properly and weakness.
I was referred to one of the best MS doctors around and yet no diagnosis. They tell me it looks like pre-MS..??
I have had several MRIs of the past 2 yrs and all of them suggest MS but no one wants to agree with the radiologist. My most recent MRI suggested my brain Hippocampal volume is at approximately the 10th percentile for
age. That sounds scary and from what I researched can be consistent with MS too. T2 weighted imaging shows several small scattered foci of elevated T2 signal, appearance and distribution is nonspecific but consistent with multiple sclerosis. no definite new lesions are identified, although multiple
lesions are more conspicuous.

I am so lost and alone in all of this . I just do not get it.

My family is on the east coast, My mother does not want to believe anything is wrong with me.. She just thinks I am making all of this up I guess. Which makes support from her nill. My husband of 14yrs is great but it puts so much more burden on him.. I am only 33yrs old and have 2 great boys 12yrs and 11yrs whom I homeschool..
Thanks for listening.. that is my story in a nutshell..

Unschooler2

[hunterd]

HI UN AND WELCOME!!!! We talked the other night in chat. It's great to have you here! Any questions you have just ask, someone will awnser. Good luck

[bops_mama]

Being stuck in the middle is so hard....I live in the Seattle area too...there is an actual clinic in Kirkland that is an actual MS clinic. They have been very friendly and helpful. i was DX 2 months ago after a LP..... I can only imagine having to wait so long to hear one way or the other....This site has been VERY helpful for me and a good place to find support.

[Nanobaby]

Hello and welcome! I hope that we can give you the support and advice that you need. You are most definitely not alone

Hello Un, i live in Everett and see doctor Bowen at swedish MS Clinic he is one of the best in the country they say , where do you go to?

[happy42day]

I live in Issaquah. I go to Swedish Medical. Swedish has just opened an MS Center in Cherry Hill. I can't say enough AWESOME stuff about the Swedish Medical system...have you gone there for an evaluation?

Thats were i go i have been going there for about 3 years now i see Dr Bowen and bobbie Severeson, they are one of the best in the nation, and the new MS Center is most excellent

[inkogneetoh]

i cant imagine the frustration you must feel not being diagnosed for so long. the scale thats used for diagnosing one with ms seems flawed, in my opinion.

i live in spokane and travel to the university of washington medical center for my nero visits. definitely worth the drive. everyone is very caring and friendly. plus everything is covered by their charity care since i make so little money.

best of luck to you!

[unschooler2]

I also see Dr. Bowen and Bobbie.. I am also in Everett.
I go in on the 8th of May to see Dr. Bowen again and talk about my current brain MRI that I am very concerned about. They seem to not be as concerned as me which makes me a tad upset..
Especially when the radiologist calls out MS on the report and the report suggests that my total brain volume is small (10th percentile), and from what I have researched can be relative to MS.

i live over in the silver firs area, doctors never seem as concerned as there patients because it not happening to them LOL hope things go well i need to make some appointments with them myself, are you on ssdi? it only took me about 5 months to get it and i did it myself, 1st time denied then i appealed at one in about 2 months, i think its easier to get here in Wa. State than other states IMHO....

[unschooler2]

I went in for my appoinment to see Dr. Bowen regarding my MRI .. It was not a good appointment for me. He pretty much disregarded what the Radiologist said about my MRI showing clear signs of MS.. So there I was pouring my guts out and trying to wrap my head around this and still nothing. I just do not get it. As of last month I also began having problems walking. It has not gone away either. It can be intermittent, but 90% of the time I can not walk "normal"..
I am going in for a 2nd opinion with the UW on the 27th of June. Hopefully I will get a better feeling there of someone giving a crap..
I have had every test imaginable to rule out other disorders.. grrr...

Thanks

Kasey 33yrs old undiagnosed..

[New normal]

I am so sorry you are experiencing so many problems - the worst of which is not being validated.

I live in the NW and see "the best" in Seattle....and my MRI'S suggest MS, I have several symptoms, and not diagnosed...so I can relate to yr situation.

Please keep us updated. We care. And, while your family is on the East Coast, and others cannot relate...there is a world out here of people who have already traveled your path of frustration, and they are willing to help....bless u.

[cosake]

Sorry you are having such difficulty with a diagnosis. I know there are many others on this board who are in "limbo". I think the hardest part must be if you are looking for treatment and can't get it.

I think a second opinion, and maybe even a third opinion are not out of line.

Have you had an LP yet, or just bloodwork tests ?

Be sure that you have a list of questions/concerns that you want to deal with and that you take a symptom list/journal and the results of any MRIs or other tests with you.

Best of luck with your second opinion.

[WillyNilly]

Hi Kasey, I just started posting yesterday even though I've been around for awhile. You had caught my eye reading both because of locality but even more, your "name". Unschooler, what an adventure, huh?
I'm sorry you're having such a hard time getting a dx, but do you really need one? Do you have or can you get GOOD insurance? Of course I don't know whats up with your Neuro (and specialists for some reason are notorious for rotten bedside manner), but in talking to mine several years ago, he spelled out that he wasen't going to officially dx me YET because the way things were going at the time, I would never be able to get decent insurance that would be effective any time soon for a pre-existing condition. I also think there's some catch that they can't legally suggest such a thing in case their in cahoots (or looks like they are) with the insurance industry- this was a very VERY "off the record" conversation.
It was just a thought I wanted to mention.
Beyond that, are your other dr's treating your symptoms and sharing records? If it's DMD you want, I know quite a few "limbo-landers" that are able to use them without that official MS label. Not sure how because I choose not to, but I know it can be done.
Has your Neuro specifically said WHY his opinion differs?
I'll be hoping for a better outcome for you with the UW, reputation is pretty much a tossup whether UW or Swedish is THE BEST. Both are supposed to be exceptional, I'm glad they'll be seeing you.