Back with update

[Kyhu3]

Hello. Back with an update. Ms specialist says no ms. He was not able to look at my two previous MRI's because the computer would not let him view the image. He said he would have radiology bring it up for him. He also order two evoked potentials visual and median nerve after asking me if I would want to do them. I am super glad he does not think at this time this is ms but he wants to make sure after these tests. Although he told me he still does not think it is. Has no idea what it is and that is the weird thing.

One last question. I asked about having lower MRI's done. Meaning I have just had brain and thought he would want me to have cervical and thoracic and he said no. Is that weird ? Also no mention of spinal tap. Believe me I do not want ms. I just am surprised he can so sure with a clean exam and only two clean brain MRI's.

[minnie76]

Hi,

Some of us don't have "clean" MRIs and still have not done an LP. I was told by my MS neuro, that they try and avoid LP's.
Someone else on this board was also told my their neuro that "it wasn't the right time for an LP".

I'm assuming that during the neuro exam, they can tell if there has been damage to the nervous system...that coupled with your clean MRI...maybe that's why they are holding off on LP

Limbo sucks

Let us know how your Evoked Potential test go...I have weakness too and my Nerve Conduction Test came back normal, so I'll be discussing that with neuro next week.

take care!

Minnie76

[Kyhu3]

Hi,

Some of us don't have "clean" MRIs and still have not done an LP. I was told by my MS neuro, that they try and avoid LP's.
Someone else on this board was also told my their neuro that "it wasn't the right time for an LP".

I'm assuming that during the neuro exam, they can tell if there has been damage to the nervous system...that coupled with your clean MRI...maybe that's why they are holding off on LP

Limbo sucks

Let us know how your Evoked Potential test go...I have weakness too and my Nerve Conduction Test came back normal, so I'll be discussing that with neuro next week.

take care!

Minnie76

Minnie.. DO you have you have a clean MRI or? Do you have weakness on physical exam or?
I was surprised yesterday that my MS neuro was completely ready to dismiss me.. mean he said this is not MS. I don't know where else to turn because my local general neuro who is well respected by all is leaving the area.. I am so lost.

[minnie76]

Hi,

No I don't have a "clean" MRI.

My first MRI in Jan 2012 said "excessive demyelination for someone of her age group, rule out primary MS, ischemic disease..." I was 36 at the time.

I can't remember if I have 5 or 8 lesions...but they are all smaller then 5mm. My original symptom was ear pain / tinnitus and dizziness for over 2 months, my fam doc was trying to rule out a brain or ear tumor when he sent me for my first MRI.

Although the first MRI report sounds a little scary, my first neuro and now my MS neuro weren't too concerned. I've had a few more MRI of brain to look for progression but things are stable. I've had spine MRI that was normal.

My hands fall asleep a lot, its like a cycle...once they start falling asleep, they continue to do so for a month or so. During that time my arm weakness is increased. So I find it difficult to vacuum, do dishes, brush my daughter hair, carry groceries. Pretty much anything that involves me carrying or holding my arms higher then my elbows. I've had 2 nerve conduction studies to see if it's carpal tunnel, however they have come back normal. So that's why I'm going back to MS neuro to try and figure it out.

Although neuro doesn't think its MS at this time, he is watching me and wants to be updated with my new symptoms.

I also see a Rheumy cause I have a high positive ANA.
Rheumy doesn't think that a diagnoses of Lupus would encompass all my symptoms.

I know how scary it is being in limbo, but after a while you kinda go with the flow, anything that is major should be documented my your docs. It's a frustrating process!!!

How do you describe your muscle weakness...do your hands fall asleep at night???

Minnie76
dx with TN Jan 2013

[Kyhu3]

Hello thanks again Minnie.

I would describe my "weakness" as all right sided. It "comes and goes" to the point that some says are
Much worse then others and some times it doesn't seem to be there at all primarily hand and foot weekness
Also right quadriceps. Feels like I moving my right hand through water when I try to extend my fingers and my wrist and I get horrible shin pain because I feel like I have to pull my toes up hard. However with manual and emg testing there is no weakness. I guess it would be a fatigue feeling. Like I rain a marathon with right side only. My MRI is clear. Evoked potentials to come.

Ms doc says no ms. I am still scared. I try not to keep it all in however when I tell family it feels like ms still they get mad because doc says no. Ms and general neuro says no.

Ugh. Thanks again.

[Katje]

Did they test you for ALS?

[Kyhu3]

Katie.. ALS is something that I had great anxiety about in the beginning of this whole mess. MY neuro told me there was NO WAY this was ALS, however after anxiety getting the best of me I was sent to an ALS specialist as my neuro felt that would calm me down.. All of my EMG's have been clean. I have had these symptoms for 2 years and I believe ALS is a very quick down hill slide I have good days and bad.. I can still do a squat, walk up and down stairs. That is usually not the case with ALS.. correct?
SORRY ALS is something that brings me great anxiety


PLEASE any and all thoughts on this are appreciated

[Kyhu3]

Minnie I have a few more questions if you could post a message back I would appreciate it

[minnie76]

Hi Kyhu3,

Sorry didn't see the questions. How may I be of help?

Talk soon,

Minnie76

[Kyhu3]

Hello thanks again Minnie.

I would describe my "weakness" as all right sided. It "comes and goes" to the point that some says are
Much worse then others and some times it doesn't seem to be there at all primarily hand and foot weekness
Also right quadriceps. Feels like I moving my right hand through water when I try to extend my fingers and my wrist and I get horrible shin pain because I feel like I have to pull my toes up hard. However with manual and emg testing there is no weakness. I guess it would be a fatigue feeling. Like I rain a marathon with right side only. My MRI is clear. Evoked potentials to come.

Ms doc says no ms. I am still scared. I try not to keep it all in however when I tell family it feels like ms still they get mad because doc says no. Ms and general neuro says no.

Ugh. Thanks again.

[Katje]

How can you say it feels like MS when you don't know what MS feels like?

Maybe you could try some anti anxiety meds or anti depressants. I use them occasionally and they do help me cope better with the odd things that happen in my body.

[misslux]

Kyhu3,

I don't mean to be harsh, but I'm not sure what kind of answers you are expecting to receive from any of us (none of us are doctors). Asking the same questions won't garner different answers.

Your doctors have all said you don't present with the usual signs, symptoms and test results of MS. Your tests and scans have all been clear. Several people here have stated that as well and gave great advice in your previous threads about pursuing other avenues including a wait and see approach and going to see a counsellor to help you through this anxiety.

I absolutely empathize with you wanting answers, but I think it is a good idea to (as suggested by others previously) keep following up with your doctors, adopt a wait and see approach and not get hung up on seeking a specific MS diagnosis, because, guess what? You might not have MS, and I hope you don't!

Take a step back, and breathe.

[bree2013]

Kyhu3

When our bodies start doing things that aren't our normal, it is scary.

While it's good to be proactive, it doesn't help you or present yourself well to doctors, if you are constantly in a mindset of thinking you have a particular illness (i.e. MS).

It sounds as though your doctors are listening and doing tests, etc. Sometimes doctors don't like it when patients go in suggesting an illness (over and over even after certain tests show nothing) -- they may perceive that as you exaggerating symptoms to fit the diagnosis.

Now, there is nothing wrong with being persistent. Many here have had to be persistent to get answers. BUT, you may not have MS. Wouldn't you rather have your doctor(s) consider a wide variety of possibilities than just focus on MS and rule it out and say that's it?

I feel for you -- we all know the anxiety you must be feeling. Please try to do something constructive with this energy. Weather permitting, can you get some exercise and fresh air outside? Inside is good too for exercise. Deep breathing exercises may help; listening to calming music.

Sometimes a wait and see approach is all that can be done -- period. So please try to use this time to do good things for your body and mind.

All the best to you,
Bree

[bree2013]

I want to apologize..

if I came across as unsympathetic.

Kyhu3, your thread has been on my mind a lot. Your concern about the symptoms you're experiencing is quite understandable. I guess what I want to say is, it's ok to want to get answers to your questions.

After rereading your comments, you mention you only had a brain MRI and are still experiencing various symptoms. I think it's perfectly acceptable to request MRI of cervical and thoracic. If your doctor still insists it's not necessary, perhaps you could mention that's the only other testing you're requesting right now and if those come back clean, you'll take a wait and see approach. Maybe your doc will agree to this compromise.

I do hope you start feeling better soon.

Bree

[lavenderteawithme_33]

I'M IN LIMBO TO.
I THINNK IT IS TIME FOR ANOTHER OPINION.
IT SOUNDS CRAZY TO ME TO HEAR YOUR DOC. SAY NO FOR AN MRI.
YA....TIME FOR A NEW PAIR OF EYES AND BRAIN TO CHECK YOU OUT.

ONLY YOU.....KNOW HOW YOU FEEL. TRUST YOUR INSTINCT .

PLEASE KEEP US POSTED.
THINKING OF YOU.