A-lot of DR appointments Still NO Answers!!!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

HollyAZ
Regular Member


Date Joined May 2015
Total Posts : 22
   Posted 8/18/2015 1:10 PM (GMT -6)   
cry

It's been awhile since my last posting, I hope SOMEONE can tell me something????


I have seen a new neurologist He is the only person thus far who seems to care.

He sent me for more lab work and MRI of the cervical and spine, he has NO answers. I have results from my brain MRI and it showed multiple white matter, the exact wording of the impression is:

There is T2 hyper intensities are greater then expected in patient of this age.

There is grossly normal flow-void in the major intracranial vascular structures.

Spotty T2 hyper intensities in deep white matter in the cerebral hemispheres, differential diagnosis includes small vessel ischemic disease, remote traumatic and inflammatory insults or demyelinating disease

Spinal tap: findings: Oligoclonal bands,SF The patient's CSF contains multiple restriction bands that are also present in the corresponding serum sample. we are unable to define whether these gammaglobulins are of systemic or intracerebral origin.

Abnormal involuntary movement Nec/tremors

MRI #2 Findings:

Normal thoracic spine pathology

Cervical stenosis:
There is straightening of the cervical lordosis, There is minimal central protrusion at C3-C4, minimally indenting in the thecal sac, there is minimal bulging at C5-C6 the other disks are normal
There is facet and uncinate hypertrophy with at least moderate right C#-C4 neural formanial narrowing.
Correlate for right C4 radicular symptoms.

Eye Dr. I have Dry Eye Syndrome, and start of Cataracts


So Yes I'm as confused as before, So my new Neuro. has now referred me to a Movement Disorder specialist. he cant find the answers... So any Hope anyone????

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 8/18/2015 9:41 PM (GMT -6)   
I'm glad to hear you are seeing a specialist. Your current neurologist had no ideas?
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

HollyAZ
Regular Member


Date Joined May 2015
Total Posts : 22
   Posted 8/19/2015 12:01 AM (GMT -6)   
Hi Gretchen,

I hope all is well with you.
No he said he had nothing, he said he feels this is the best solution for me. (which I agree), he said he does not want to guess at what it could be. at first he thought my Hoshimoto, because my counts were way off. But then he said no so I'm happy as I said he seems to be the Only Dr. that seems to care for the results. On my second visit my blood pressure was high and my pulse, he called me later to see how i was and wanted me to make sure i let my Dr know. so He is a very nice caring Dr.

I hope to have something soon. Do you have any ideas as I posted my exams so far??

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 8/19/2015 7:32 AM (GMT -6)   
Be sure to tell your doctor about the high blood pressure. That is not good.

I really can't say. I am not a doctor. You seem to have white matter lesions but they can be caused by so many diseases/syndromes etc.

When is your appointment with the movement specialist?

Dry eyes and cataracts would not be a symptom of MS. You have something else going on there.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

HollyAZ
Regular Member


Date Joined May 2015
Total Posts : 22
   Posted 8/19/2015 7:43 AM (GMT -6)   
My Dr. already know about it.
I'm waiting for them to call it usually takes a couple of weeks for the insurance approval.

They (my Dr's.) all have done so many test and they came back normal they said

My Primary think PD, last Neuro. said the Fibromyalgia, new Neuro, thought Hoshimoto, and Rheumo. seen my MRI and asked have they mentioned MS. so I really don't know.

harleybug1
New Member


Date Joined Oct 2015
Total Posts : 1
   Posted 10/16/2015 2:58 AM (GMT -6)   
In response to your question YES you can get a diagnosis with clear MRIs. I started having MS symptoms in the 80's before MRIs. I finally got a diagnosis in 2008 even though all test were negative. I was told that 5% of MSers can have negative MRIs.


HollyAZ
Regular Member


Date Joined May 2015
Total Posts : 22
   Posted 10/16/2015 9:14 AM (GMT -6)   
Hello Harleybug1,

I appreciate your comment. I would Love to hear more about your Journey.
How did your symptoms start ?

Did you have any of the same issues that I have?

I have spoken to several people and I have seen so many videos of people with MS, and they are all the same thing I've been going through. Some have a little different.

I finally see the movement disorder specialist on the 22nd. I Sooo can't wait.

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 240
   Posted 10/16/2015 11:19 AM (GMT -6)   
The current diagnostic criteria for Multiple Sclerosis, The revised McDonald Criteria, relies heavily on MRI evidence. There is a very small percentage (5%) of those who are diagnosed with MS who do not initially present with lesions on MRI. As the small percentage indicates, it's pretty rare.

In 1985 when I was diagnosed the MRI was relatively new, we had two machines in the entire State. My MRI was clear, Lumbar Puncture was positive. I am one of the 5% diagnosed without lesions.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

HollyAZ
Regular Member


Date Joined May 2015
Total Posts : 22
   Posted 10/16/2015 3:35 PM (GMT -6)   
Hello, harleybug1, and Snoopy

I had a MRI in 2012 that showed spotty white matter in the subcortical, and then I had one early this year and it showed white matter in the cerebral. I don't know if you have read my full story, sorry it is a little long, and then i have posted updates here and there. I had a spinal tap and the results are on the post.

If you'd Please read my history and give me an opinion I would So Appreciate it. Thank you...

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 240
   Posted 10/16/2015 4:26 PM (GMT -6)   
Hi Holly,

I don't know what to tell you...sorry. I don't have a medical back ground, I'm just someone who has lived with this disease a long time. It can be very frustrating when a Neurologist doesn't know, but at least he is referring you to another Specialist who might be able to give you some answers. Hang in there and hopefully you will receive a diagnosis soon.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4713
   Posted 1/5/2016 9:59 PM (GMT -6)   
My mri said the same thing ...could be other infectious cause ...see cpnhelp.org

HollyAZ
Regular Member


Date Joined May 2015
Total Posts : 22
   Posted 1/6/2016 3:33 PM (GMT -6)   
Hello there, Well thank you for info. I had a new MRI w/ contrast on Dec. 21. The findings were
stable non-specific periventricular and subcortical hyperintensities reflex demyelinating process. seen neuro. yesterday and he said there getting one step closer to the answer?

when I look up this finding it goes to the most common demyelinating disease is MS. and all of this is sending me to a looney bend.

HollyAZ
Regular Member


Date Joined May 2015
Total Posts : 22
   Posted 1/6/2016 3:38 PM (GMT -6)   
Hey all sorry it's been awhile my movement disorder dr. has diagnosed me thus far with
essential tremors, cervical dystonia, spasmodic dysphonia, depression/anxiety .

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 1/8/2016 5:06 PM (GMT -6)   
Are there any reasonable treatments?
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

HollyAZ
Regular Member


Date Joined May 2015
Total Posts : 22
   Posted 1/8/2016 5:54 PM (GMT -6)   
Hello Gretchen,

There are no cures for it like MS they can try and treat it with meds. so far none have helped.

I have good days were I have no tremors. I'm constantly numb and this feeling of currency and spasm's through out. this is so frustrating. did you read my last post about the mri showing demyelinating process?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 1/9/2016 7:32 PM (GMT -6)   
Yes. I read that. Will you be seeing an MS specialist?
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

HollyAZ
Regular Member


Date Joined May 2015
Total Posts : 22
   Posted 1/9/2016 11:16 PM (GMT -6)   
I see a new neurologist on the 11th of Feb. my neuro is leaving to Virginia so I dunno. and I see the movement disorder again on the 8th.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 18, 2018 3:13 PM (GMT -6)
There are a total of 2,972,918 posts in 326,036 threads.
View Active Threads


Who's Online
This forum has 160867 registered members. Please welcome our newest member, RAbid.
437 Guest(s), 14 Registered Member(s) are currently online.  Details
dinkydonuts, Lendi, Notime4lyme, sandyfeet, SickSalamander, JNF, Sr Sailor, myilah, Gear, PA_grandma, ShinytopPC, Crazyick, straydog, Newmommy26