Currently Limbo; hopefully not for long!

[annie_mae]

Hello,

I guess I can say I've been in limbo for quiet some time now, which looks to be the norm, from what I've seen. It can be very frustrating.

With lots of symptoms of MS, I've been diagnosed with Fibromyalgia, Chronic Fatigue, Reynaulds, possible Carpel Tunnel, ADHD (primarily inattentive), Urinary Retention, Incontinence, Headaches, GAD, Depression....probably others but that's all I can think of for now.

Some of the symptoms include: Numbness and tingling in the hands, fingers, hands, legs and feet, intolerance to cold or hot, memory loss, forgetting my words, losing myself in conversation wondering where I was going with the topic, getting lost driving, headaches in the upper neck, unable to retain what I read and having to break down sentences (rather reading them or listening to someone talking) in order to process what is being said or read....then a few minutes later I couldn't tell u what I read. Hands popping when picking something up, like a ligament is being torn, can't stand or walk for long without sitting down. And I have this wierd flip that something in my ribs do that freakin hurts like heck (almost like a baby flipping around in there) but makes my muscles or ribs real sore for awhile afterwards, muscle jerks, insomnia, one eye aching and sometimes waters....sometimes I just have to shut that eye and read with the other. I'm sure there's more symptoms but I'll cut it shorter. Lol.

I've went to several Doctors, Urologists, Psychologists, Psychiatrists, Internists....etc...explaining my fatigue, memory loss....etc...and never felt like any answers were given.

I finally shadowed the door of a Neurologist that the MS Society had on their list (Thank you MS Society!) This Neurologist I believe is on top of his game. He has ordered a battery of tests for me to take and I believe he will be the one to figure out my Hot Mess.

Let me go grab the list of tests and see if any seem familiar. I just need to copy and paste it here....

[annie_mae]

These are the tests he set me up with:


4/3/13 - Visual Evoked Response (VER) Test
4/5/13 - Somatosensory Evoked Response (SER) Test: 11:45 am
4/5/13 - Optic Tomography*
4/8/13 - Electroencephalogram (EEG): 11:45 am
4/8/13 - EMG & NCS: 1:20 pm
4/9/13 - Neuropsychological Testing: 10 am - 2 pm
4/9/13 - EMG & NCS (Electromyogram & Nerve Conduction Study): 2:40 pm
4/10/13 - MRI {Brain} w/Contrast - 75 minutes: 12:00 pm/Noon
4/11/13 - MRI {Cervical Spine} w/Contrast - 75 minutes: 10:30 am
4/12/13 - MRI {Lumbar} NO Contrast - 45 minutes: 10:45 am
4/19/13 - Sleep Study - overnight stay
5/10/13 - Follow up Consult for Testing Results: 2:30 pm

I do have to say, the SER I took today was a bit painful.
Has anyone taken that one, if so, did the person administering it say how high they turned the number to?
She had to turn the right foot up pretty high in order to get a signal from the brain, I don't know much about the test.

[SNOOPY]

Hi annie_mae and welcome to MSWorld.

Sounds like you found a Doctor who is covering basis to find a reason for your symptoms, that's great!

It looks like your neuro is trying to rule in/out different causes for your symptoms, not just MS. Some of the testing you are having is not part of the diagnostic criteria (McDonald Criteria) for MS.

It is common for neuros to rule in/out different conditions by doing different diagnostic tests.

One of the things I recommend is to do some research on any and all prescription medications you are taking. Unfortunately, many medications can cause many of the symptoms you are having.

If you are not on any medications this obviously would not apply in your situation

Medline is a great resource to check meds:
http://www.nlm.nih.gov/medlineplus/

[suziq38]

Your neuro sounds fantastic.
Please keep us posted on your journey and results.
I am still in limbo, although I took more brain, and spine MRI's yesterday.
I don't think that I have MS, but I may be in denial.

I hope you don't have it, but it is a relief to know what you have when someone finally can say: "You have______ because of the results of XYZ tests, plus your clinical presentation of your symptoms."

This limbo stuff has me a bit stressed out.

[annie_mae]

Hello Snoopy and thanks for replying to my posting.
I agree with you, in that my Neurologist (first one I've ever seen) is, I'm sure trying to rule out other things in addition to testing for MS. He was probably the most thorough Dr I have been to, thus far, regarding my complaint of current symptoms.
He had me walk frontwards and backwards, checked my reflexes (not just the knees and elbows....he did ankles and others too) it seemed my reflexes were hyperactive - I looked up the +4 and +5 he was stating to the nurse taking notes on the computer as he called them out to her. My husband heard a -1 somewhere within the numbers as well.

He also looked deep into both eyes (I believe the Optic Nerve was of concern to him) I heard him say something to his Nurse as she was dictating the notes, something about my complaint of my right eye being blurry, (especially after eye strain) ..but he said although my complaint was the right eye, he wanted to do more looking/testing into the left eye-he spent more time looking deep into the left.

I also inquired about my MRI in 10/2012, my concern was it was without Contrast and it seems I read somewhere that Contrast would especially show lesions, if there were any. I had asked him to view my MRI/brain CD with me (as I seen they had it pulled up on a big monitor, he agreed to view it with me without blinking an eye. I had a few white areas and white spots I wanted to make sure weren't like tumors or annurisms (I feel like such a hypochondriac sometimes, lol.)
But he was great, I've never had a Dr be so thorough with my concerns. My husband was even very impressed by him.

As for the sleep study, he recommended that due to, if I fall asleep on my back, I wake up gasping for breath, so I've learned to sleep on my side. And if I fall asleep on my belly/stomach, when I wake up, it almost seems like I'm paralyzed partially from the waste down until I slowly move around, the pain is horrendous around my booty bone area.

So I guess he is not only checking for MS, but also doing a thorough testing of all my complaints, in addition to my abnormalities he found during the exam regarding the Optic Nerve and Reflex issues.

Per your recommendation, Snoopy... I did a little research on some of my current meds and u are correct in that they can cause some of the complications I am having. I'm just thankful he is performing all of this testing, upon the finding of results, he can make what adjustments are needed according to the findings.

[annie_mae]

Your neuro sounds fantastic.
Please keep us posted on your journey and results.
I am still in limbo, although I took more brain, and spine MRI's yesterday.
I don't think that I have MS, but I may be in denial.

I hope you don't have it, but it is a relief to know what you have when someone finally can say: "You have______ because of the results of XYZ tests, plus your clinical presentation of your symptoms."

This limbo stuff has me a bit stressed out.

Suziq38 -

I'm so sorry, you are going thru this "limbo" state, as well.
I so hope your most recent MRI's are able to tell your Dr what is causing your symptoms. What a relief it will be for u to find out!

Be sure and get ur CD of the MRI's if you can. I know I received a letter stating my MRI in October was "Normal."
I went up and got the CD and drove myself nuts looking at Google and clicking on the "Images" tab to compare my pics to other MRI images, it was nothing to spend all day on it, however, that stressed me out because in the back of my mind, I knew I had laundry to do, kitchen, set something out for dinner....etc... But I was determined to try to figure out on my own what was causing my symptoms.
I finally took the CD to my "New" Primary Care Dr for a second opinion. Believe it or not, they just wanted to know if the CD included the paper report. Then they called me and said "Ur MRI was normal." I then inquired to the Nurse if the Dr had viewed the MRI Images or just read the report (I had took the paper copy out of the CD case, in hopes of her viewing the images-forgetting a copy of the paper report was ON the CD-lol and grrrrr at the same time.) the nurse stated she didn't know if the images were viewed or not. HELLO! Isn't that the whole purpose of a second opinion? Lol.

So I then called around for some Neurologists, finally found one that didn't require a Dr's Referral and swung by their office a day before my appt, picked up the 17 page "New Patient Forms" and dropped of the same MRI CD for them to view prior to my appt. So I was somewhat comforted to see he had the MRI Images up on the monitor as I walked in to my first appt with him.

So please get ur CD. Let us know what ur results are! I'll keep u in my prayers. ;-)