MS or not?

[Traci0211]

Hi all - the last 8-9 months I have been experiencing increased weakness on my right side.  I drop everything I pick up wiht right hand, cannot open simple jars, etc. that used to be no problem.  I  have reoccuring headaches that last for 2 weeks or more and have reoccuring memory loss.  In my job I do presentations for clients and find that 1/4 of the way into presentation, I forget what I am presenting.  I have balance/vertigo issues and my right foot had "pins and needles" type pain into my toes and lower calf for 5 months.  Felt like my foot was "on fire" at times.  Then pain dissapeared for no reason.  I get extremely fatigued doing minor chores and have to lay down for 2hrs or more.

My initial Neurologist said "MS" and my 2nd opinion Neurologist said she wasn't impressed with MRI and didn't feel it was MS..  Said I need to have the somewhat large "venous angioma" in my left cerebellum checked out.

My Christmas was devastating due to my thinking I had MS.  I am so confused!  Do I just keep going to Neurologists until someone can help me?

[lymemom]

Think LYME. I see many people with exactly your symptoms. Many have been told they have MS. When treated with steroids, they get much worse. When treated with antibiotics, they improve. Find a Lyme literate doctor and get tested with the right tests done at the right labs. For more info go on the ILADS website or google the Lyme Research Center at Columbia University.

[Sonaya]

I know its hard to hear another person saying hang in there.  But from someone who spent the xmas t hinking they might have ms or some other brain problem, I too know exactly how you feel.  I have same symptoms as you and some more but all on the left side.  My doctor thought possibly MS, a general physician says no, now it might be my spinal cord, cerebral because aparently the cerebral spine affects the sensory part of feeling these tingling sensations we get and the pins and needls in our legs, hand and fett etc.  I really am very interested to hear how you get on because I am in exactly the same boat and so frustrated and confused.

Yes keep going to Neurologists until your happy with a final answer.  I am yet to see a nuerologist, seeing general physician at the moment but the next step for me is to see one that is for sure.

Take care and please dont give up, push for answers its your body and its happening to you.
Sonaya

[KySassy63]

Well, I can only say that from experience with my mother over the past few months has taught me that it may take 2,3 or more doctors until you really find out what is wrong.

[Traci0211]

I feel like you and I are in the same boat except.  I am having LP and EP's this weekend.  I have seen 2 Neurologists and 1 Neurosurgeon and I told my husband that it appears to me that without the "burden of proof" (i.e. lesions or inflammation in LP) the physicians are leary to say it's MS.  

Being in the Pharmaceutical industry for 12 years, I know that if you wait to treat the illness for too long, some of the effects are permanent.

My initial Dr. told me he is 75% sure I have MS and has diagnosed patients prior to lesions appearing and in all patients, a lesion has appeared at a later date.  While I want to believe him, what if I begin these high cost, high powered drugs and it;s NOT MS?  What if I wait 2-3 years for a lesion to appear and the effects are worse and disabling.

At some point, I guess it's a leap of faith between you and your physician.

Keep me posted on your progress and I will do the same.  My last 2 tests are this Saturday and Monday.

[zombie32]

I am in the same boat like I hate to say but million others, who have not been diagnosed and been told may be its MS may be its in ur head or may be u r crazy. I am sorry to say this, but I was told by a very senior doctor that he just wants me to wait and see. My MRI done 3 times is clear, my LP is negative, my evoked potential is ok and tons of blood work is ok. What I dont understand is that, Ive heard MS is hard to diagnose and the Doctor's should rule out every thing before thinking of MS but here the case is sooooooo opposite. They are going the other way, waiting and seeing for a single lesion to appear and I might stay like this for a year (I was told) before they do another MRI. Soo frusterated. Can anyone tell me what other diseases can have these symptoms:
Tingling in arms and feet, every day off and on
sometimes burning sensation in feet.
numbness occassionally in arms and feet
Used to have a lot of weakness, not anymore
Pain in left arm, started with tingling in left pinky finger 10 months ago.

Thanks YOU

[Traci0211]

Thank you for your post.  Sounds like you have had some experience in finding a good doctor.  I have seen 2 Neurologists and 1 Neurosurgeon and they all say something different.  How do you know who to believe?

I hope your mom had a better outcome than I am seeing right now.  If the doctors had consistent responses, I would feel so much better.

[Traci0211]

Hey there, thank you very much for your post.  Sounds like you and I are in the same predicament.  I am scheduled for an Evoke Potential test this coming weekend and a Lumbar Puncture on Monday morning.  Sounds like you have had some experience with this.  I am very nervous about this one.

I also experience extreme fatigue...not sure if you have that as well.  I can do one load of laundry or vacuum just my living room and I have to lay down and sleep 3-4 hours due to exhaustion.  It's awful.

I have had the MRI with contract and it showed nothing. I am told before they can completely rule out MS, they need to do these last 2 tests.  

Keep you head up as well!  I will stay in touch with you so we can keep each other company....as much as possible!

Regards!

[Traci0211]

Thank you very much for your post.  I will read up on the Romberg test.  In all my Neurologic testing, I continue to fall down when trying to walk on my toes and with one foot in front of the other.  I am not sure if this is unusual or not.  I would think at 41 years of age I should  be able to pass this test with flying colors.

I have a Evoked Potential test scheduled for Saturday and a Lumbar Puncture Monday.  Not sure if this is "overkill" but I am very anxious to determine what is causing my symptoms but I want to rule everything out at this point.

I am definitely keeping a positive attitude.  I want to feel better so I can spend more time with my beautiful son and wonderful husband.

I did meet with a Neurosurgeon yesterday who spent 5 mins with me but said the Angioma was nothing more than a "blip" on the screen.

Regards,

[Vanessa Lacuesta]

Hi,

Cerebellar disease usually affects gross motor movements.
Ataxia or gait problems ( usually walking with legs apart to keep balance),nystagmus( rapid back and forth movements of the eye) and some off shooting when asked to point towards something .A problem with balance is also detected . A positive romberg test may rule out a sensory or a cerebellar cause. A negative Romberg will point towards a cerebellar disease.This is something you can read on.


The burning  pins and needles type sensation over the legs appear to be more peripheral in nature.
Was a scan of the spine done?

If indeed a venous angioma is diagnosed , then its size and location may explain the symptoms of difficulty in gross motor mevements and sense of imbalance. Most venous angiomas however,are asymptomatic.But you have mentioned yours is quite large.This may present with symptoms.Studies have shown that venous angiomas are best treated conservatively ( no surgery).

Have you underwent evoked potential testing? Multiple sclerosis may not be completely ruled out yet.

I suggest you stay calm and keep a positive attitude. Maybe you can discuss your condition with your neurologist.Discuss with him the possibility of venous angioma to cause your condition.Let us take things one step at time.

All the best.