need to vent..and Thank you

[houseofallboys]

Need to vent.

Today is a really rough day extremely fatigue and legs are weak and wobbly and  I have cloudy vision..

Here is my story back in  the start of May I started feeling imbalanced and started having some blurry vision it would come in and go...

I had a bladder infection that probably a week later turned into a kidney infection at the end of May...

A couple of weeks later in July my sense of balance was completely gone I was stumbling around like a drunk person I favored my right side...

I finally broke down to see GP (hadn't seen a dr in two and half years) she was concerned and sent my for MRI.....nothing clear

I was sent to a Neurologist who I like :::: I have had a ton of testing:

Two MRI (head) with ms protocol ..this where done pretty early (dye and no dye)
One MRI with Ms protocol of the spine and thoracic spine ..clear  

I have all the blood test to rule out MS mimics everything had came back fine...

My Neurologist is not ruling out post virus and not ruling out MS...

About a month ago I was given a 5 day IV dose of sed/medrol ( then I was put on a two week does of prednisone)..it helped some of my symptoms ..especially the drunk walking ....I'm still wobbly but nothing like I was ......

Since my initial symptoms my hands tremor all the time...my legs either bounce or tremor not sure what to call it when I'm laying down or crossing my legs....Lately I have been getting a vibrating sensation in my right foot...I also have some pulsing in my legs ...occasionally my inner thighs and pelvic area goes numb....occasionally my feet will experience some numbness....also I'm not sure what this is but when I bend my neck to grab something ( does not happen all the time)  I get a weird sensation that shoots out from the spine outward underneath my shoulder blades....Off and on dizziness..light headed....all of symptoms come and go accept my hands and feet tremor all the time and pretty wobbly walking ... also if I get over heated which is easy to do in Texas my symptoms seem to worsen....

I did have a spinal tap the only thing they found where some o bands in the spinal fluid only not in the blood...

My neurologist a few weeks ago  put me back on prednisone for 96 days with a tapering dose.......

I'm just frustrated my symptoms have gotten worst since the initial onset and if its post viral  I would think things would start to go away and I would  not be adding more symptoms.....

Before all of this I was training for mathron and today I'm Iucky to get off the couch...I do have good days and I have really bad days of fatigue and all of my symptoms are in full effect....


I'm lost and confused I'm going to see my neurologist in a few weeks and tell her that I'm not getting better ..I know that all of my testing of the MRI where done with and with out dye on 1.5 T machine.....I'm wondering if it would be a good idea to go to Temple which is hour away... they do have 3T mri machine ...if that would be worth my time to make sure nothing was missed because what I have read it's hard to get a clear picture of the spine ...I feel like a lot of the symptoms might be related to my spine related .....Do you think it would be worth my time to go to Temple to get 3t mri?



Thank you for your time and for any comments or suggestions..,.

Finally thanks for letting me vent...


House of all boys

[houseofallboys]

One more quick question I have been looking on internet and on this forum ...did not find clear cut answer


Does anyone know if a viral infection could produce oligoclonal bands in spinal fluid only........thanks

[houseofallboys]

Thank you all for the comments and suggestion I'm going to see if my neurologist will write me a referral if she thinks it's necessary...It's Scott and White in temple and I did look at their website and they do accept my insurance. I think my insurance company will cover another MRI since I'm not dx...I hope maybe this will provided some additional answers...I 'm keeping my fingers crossed in post viral but I'm not 100 sold on it and never is my neurologist since our last visit.. She commented that she thought I would look so much better ...She too commented that my tremoring has gotten so much worse and that my right side of my body is considerable weaker then my left....So I'm hoping my next visit I can get some more answers that might lead me in right direction....Thanks again

[Lulu54]

Hi H-o-a-B, From what I understand the lasting effects of a viral infection can linger for months and even into the year(s).  I'm in agreement with you, though, that while you are waiting for it to resolve you should be investigating other possibilities.  

A 3T is preferable from the 1.5T and you already  understand that.  So yes, if you can get inand its only an hour away, you might want to see if you can get that referral.

I'm sorry that you continue in limbo - I've told others before and I'll repeat it to you - I wouldn't deal well if I had found myself in that place for long.  Hang in there,
Lulu

[figuerpa]

I hope you find answers soon. I know that 3T machines will show more that the 1.5 machines. I would take the trip if I had the chance. I am like you my doctor only has 1.5 machines. I am going to look into a place that has the 3T to see if I can get in.

I hope you find some relief soon.

Paula

[texasgirl150]

I do not have any words of wisdom for you, but someone here will. I am having issues too, although mine a bit different. I hope you and I both finds some answers soon. (((hugs)))