My Story ... as briefly as possible! ;)

[Whimpurr]

symptoms:

fatigue (barely made it through this past summer)
pain
weakness (general body, sometimes just arms and legs)
weak legs ... often more pronounced on the left side of my body.
Gait issues ... have gotten really bad at times then get better
Balance issues ... comes and goes ... poor balance for years though
pains in face, head, eyes, feet, pretty much anywhere in my body ... sometimes sharp stabbing, sometimes burning, sometimes aching.
tight girdle sensations (MS hug?) around ribcage which feels like my breath is short or that I am "wheezing"
elastic band sensation around lower left leg ... like tight sock
frequent urination and incontinence or bed-wetting from time to time
bowel constipation
---------------------

Local Neurologist's Nurse Practicioner:

MRI with and w/out contrast June 2012 - brain and cervical spine - several (no number given) white matter lesions on left frontal lobe

MRI with and w/out contrast Nov. 2012 - brain ONLY - same noted white matter lesions (non-enhancing) no changes ... both reports listed possible MS

Currently, because my 2nd MRI had no changes, my "doctor" (NP) has put me in "wait and see" mode. *sigh* I do have Gabapentin (Neurontin) to take for pain and discomfort but do not take them unless I am VERY uncomfortable.

I asked my primary care physician to refer me to the Vanderbilt MS Clinic in Nashville, TN and I am currently waiting to hear something. My records were faxed by my GP's office 3 weeks ago and I still can't get any response or answers as to whether I will be seen or not and when!

I am so frustrated and just really need to vent, I suppose! If anyone on this board has been to the Vanderbilt clinic, could you please share you experiences and also how long it took to get an appointment?

Thanks so much!

[Whimpurr]

CORRECTION:

I looked back at my MRI reports ... here is what they say:

June 2012: There are several small foci of increased signal in the subcortical white matter that are characteristic of the aging process but there are two large foci of increased signal in the deep white matter tracts of the left frontal lobe that suggest a demyelinating process

IMPRESSION: Several non-enhancing hyperintense white matter foci in the deep white matter of the left frontal lobe suggest a demyelinating process.

November 2012: Several stable nonenhancing scattered T2 white matter hyperintensities are again demonstrated. The largest resides in the left frontal lobe superiorly in the deep white matter measuring 8 mm.

IMPRESSION: Stable nonenhancing T2 bright white matter hyperintensities. Common etiologies can inclue demyelinating disease or migraine headaches.

*to my knowledge I have never had a migraine headache in my life*

Any comments, greatly appreciated!!!

[minnie76]

Hi,

Don't get too worked up about your MRI reading. I have under 20 lesions but mine are small nonspecific.

MRI in Jan 2012 said "excessive demyelination for someone of her age group" (35 years old) Causes for Demyelination require exclusion including primary (ms),ischemic and infectious/inflammatory. Correlate clinically.

MRI in July 2012 said basically same as previous MRI no change in size or number of lesions...my first neuro said at first..well I don't think it's MS cause you don't have ON..its prob from migraines...then in July he said...well at least it's not MS cause in 6months it would have changed!! I felt like telling him "I thought it's not Ms cause the lesions don't look like MS lesions...not because it hasn't progressed!!! I don't see him anymore!

Well, I've been to 3 Neuros including 1 MS specialist in Toronto St Mike's clinic.

All neuros looked at my MRI and said its not MS but we'll keep an eye on it.

Both MS specialist and 3rd neuro(saw him cause I was getting weird visual sensations in my right eye) said that they want to know if any of my major symptoms last more then 24hours to come back.

I know it's easier said then done...but please try and not read too much into the MRI results.

What I've been doing is try and not focus too much on the smaller symptoms...and the ones that really bother me I've noted them down.

Wish you all the luck..I can relate to most of your symptoms! And if anything last more then 24hours I would call your current neuro and let them know!

Sorry I can't help with your questions about the MS clinic...but I just wanted to say you're not alone, and put yourself on a waiting list. It cut mine from 7 months down to 2!!!

All the best,
Minnie76

[Whimpurr]

Thanks, Minnie! My symptoms always last more than 24 hours! In fact, for the past 6 months or so, they tend to last about 3 out of 4 weeks of the month. All the sudden for whatever reason, I will get a break and be practically symptom free, then all the sudden, they are all back again. It's the strangest thing. My balance will get so bad and my leg so weak, that I stagger when I walk and end up trying to compensate for it so much that I will end up with terrible hip pain from the un-even pressure of my messed up gait. This will go on for weeks at a time then out of the blue, I will be almost normal again. I think I always feel just a bit off but when I get back to not obviously walking slowly and cautiously, I know that I'm doing better again!

[FourPaws]

I went through 9 years of 'it's not ms' for that to change to 'it's ms'. Waiting it out is hard. Been officially diagnosed six weeks. On my first round of IV steroid treatment right now.

You may find that staying on the gabapentin more consistently rather than just taking it when the pain is really bad may help more with the fatigue. It is always weighing out if the side effects are worth it.

[Whimpurr]

I went through 9 years of 'it's not ms' for that to change to 'it's ms'. Waiting it out is hard. Been officially diagnosed six weeks. On my first round of IV steroid treatment right now.

You may find that staying on the gabapentin more consistently rather than just taking it when the pain is really bad may help more with the fatigue. It is always weighing out if the side effects are worth it.

Thank you! I am just not one to take lots of medications if I don't absolutely have to. I'm not even sure that if I am indeed diagnosed with MS, if I will even take the DMDs.

[Scaredintn]

Whim purr , I spent 3 weeks going back and forth with Vandy. They insisted they did not have medical records and Dr sent 4 times......they finally found them and appointment is in March....keep calling and requesting appointment.there's got to be a better way, but I don't know what it is...good luck

[Whimpurr]

Whim purr , I spent 3 weeks going back and forth with Vandy. They insisted they did not have medical records and Dr sent 4 times......they finally found them and appointment is in March....keep calling and requesting appointment.there's got to be a better way, but I don't know what it is...good luck

I finally was able to talk to someone today who also said that she could not locate my files yet she said that there was notation that Dr. Moses had them but she couldn't find them herself! Something is seriously wrong there!!! My GP faxed them 3 weeks ago as well!!! She told me she asked my GP to resend them today! GRRRR!!!!