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Need help, can this be MS?
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Need help, can this be MS?

Hi, I am just wondering if you must have a cervical MRI with contrast in order to see lesions and get dx'd with MS? Or would they see the lesions on a non-contrasted MRI? Also, would a neuro exam completely rule out MS if they found no "clinical"(I say clinical because their tests show no loss of strength but I feel weaker and my muscles fatigue much faster than they used to, so for ME it is NOT normal strength) neuro problems? I have had a problem with my left arm for almost 8 years. The painful numbness comes and goes for a few months at a time generally. Now in this past year, I have also developed muscle jerks in that same arm, sometimes my right arm/legs will jerk as well as my head occasionally(and lately is becoming more often) but mostly my left arm. Also, wide-spread muscle tenderness that drs say is more than fibro but are not sure what it is(been to a rheumatologist already and he is suspecting something more neuro-muscular and possibly sjogren's as well due to dry eyes and joint pain, but his initial tests show no antibodies at this time and I will be following up with him this winter)..I also have a band across the back of my scalp that feels numb for days at a time, this also comes and goes. I have also had a few optical migraines in the last couple years that were pretty bad, in addition to some blurred vision which seems worse in my left eye. In addition to that, I also have seen little twinkling white lights on occasion in my field of vision. I also am starting to "hold" bright lights in my vision(after I look at car lights or towards the tv or something brightly colored/lit up, my vision "holds it" like it would after a flash on a camera for quite awhile, longer than what a flash would)..extreme light sensitivity and lots of "floaters"..some days odors bother me immensely and almost make me nauseous(especially perfumes/colognes).
I also have some word recall issues lately when I can't retrieve the word I am looking for and I can easily forget things, even simple things I should never forget. In addition to all this, I have been struggling with very tender areas(feel like a bruise when someone touches the area) of muscles as I mentioned(rib area, under arms, down the arms, the outside of my thighs, behind my knees, all over my sacrum and also my abdomen and all over my back).  Two neurologists, both have said not MS based on my neuro exam in the office and a negative EMG last winter in my arms(my physical therapist said he has yet to meet someone with a positive EMG, they all seem to come back ok for some reason). I have had two spine surgeries in the last year and a half on my lower spine(but these surgeries were after the tenderness began). I also had a regular MRI WITHOUT contrast last winter to see why my arm is going numb but they only found minimal foraminal stenosis in c6/7 and also noted some arthritis in the spine, but pretty mild. The surgeon told me my neck wants to close on the nerves a little bit with flexion which is the opposite of what the bones should do-theyshould open up on them, my spine wants to go back into extension for some reason while trying to flex.. he does not know why it does that and he had only seen it once with another patient after a car accident but I have not had that kind of trauma outisde of some falls on my back and whip lash as a child with a horse-riding incident.
And just recently, I was also told I have vaso vagal(positional primarily) and the heart dr wants me to start on meds to keep me from fainting from low pressure upon standing or at the top of stairs.
I realize I have a lot of spine stuff going on, but I don't know where these muscle jerks are coming from and the drs seem lost on this as well as why my left arm is painful and wants to go numb for months at a time. The "jerks" were with me last winter for a few months and then disappeared only to return in July this year. They get quite uncomfortable after awhile and I have dropped numerous things with my left arm. Can anyone tell me if this could be MS? One other thing that scares me is that when I have these jerks, my diaphragm is involved sometimes and my breathing will be affected(I sound as if someone has startled me even when I am just sitting watching tv or something totally relaxing), it scares me to think something is affecting my breathing and maybe even has something to do with my heart issue I just developed..Does anyone know if this could still be MS? Or something else neuro-muscular? I need this resolved!!! thank you:)
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Avatar_f_tn
Hi Alison.
It sounds like you are having a bit of a bad time. Firstly i have heard of people having a normal MRI, and still have MS.
Have you had a lumbar puncture to check for the O-BANDS.?
This test is usually the best for MS.

Also your symptoms sound like they could be MS, but there are a good few other illnesses, which can mimic MS, and these should be ruled out also.
The main ones being Sjorgens, Anti-phospolipid Syndrome, Lupus. etc......

Have you had any antibody testing for ANA, ANTI-DNA, ANCA, LA, ANTICARDIOLIPIN,etc..........


A neurologist should do a full screening for MS, to rule it out, and that being a MRI, along with a lumbar puncture. To check the CSF for O-BANDS.

It sounds like this maybe an autoimmune problem, as you are having multiple symptoms.
I hope this as helped you, but if you need anymore help just give me a shout.
Good luck, and remember dont give up.
Nicola
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Avatar_f_tn
Hi Nicola,

No, they have not done a lumbar puncture. This last neurologist thought maybe the muscle jerks were from my cervical spine and is forwarding that issue back to my neuro-surgeon but cervical spine issues would not explain muscle tenderness in so many places along with vision issues and some vertigo starting up..I am going to ask for an MRI with contrast when I see my spine dr soon, but that won't rule it out either since lesions can just be in the brain from what I have heard and I have not had a brain mri since 2002.

I will ask my neurologist over the phone this week if they would consider doing the lumbar puncture just to give me some peace of mind over MS.
Also, as far as those specific tests you mentioned, the rheumatologist ran some antibody tests last winter and they all came back ok(but he mentioned that sometimes with autoimmune tests, antibodies can take years to show up), he did mention sjogren's as a possibility for me even though that blood test was negative and he said fibromyalgia but it seemed worse than typical fibro and that does not explain some of my other sypmtoms either. As far as Sjogren's, I did not think it could explain myoclonic jerks or a "dead" arm on and off, or muscle tenderness all over....It would explain my dry eyes and joint pain though ..I also have what I call "bone pain",  my pelvic bones and ribs really hurt if you even palpate them, even slightly most days). My physical therapist used to ask if I had a neuro-muscular issue..or soft tissue problem, I just want the drs to give me an answer, this will keep me from working full time until it can be treated. It is really starting to bother me that I don't know what it is and therefore, can't address it..
I will write down the tests you mentioned and ask my drs if these have ever been run(to my knowledge they have not)...

I really appreciate your help!! THANKS!!!
I'll keep you posted!
alsion
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1443413_tn?1284482646
I read your response to alison, sounds just like me.  Still MS symptoms persists. Do you know if a Lumber puncture can come back negative also? Newest symptom for me this month is what looks like Rhumatoid A. R. fingers, and at 74 degree I go into instant bone chills, and Heat related Auto/glass "triggered severity of all MS symptoms.  Only after 4 progressivly worse summers can I now distinguish UV rays thru glass as being much worse than outdoor sun heat.  just worse I guess this year Any ideas?  Those are more specific than most, as is the hair loss.
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Avatar_f_tn
Hi.
Usually the lumbar puncture shows up O-Bands in the cerebal spinal fluid in MS.

I was misdiagnosed with MS, in 1998. I then went on to suffer some very awful invisible symptoms, and some seeable symptoms.
My joints have been affected, and also the skin sensitivity, along with hairloss, which you have mentioned yourself.

My first thought is this could be one of many auto-immune diseases, and funny enough, they all have symptoms which overlap one another. In other words they mimic one another.
My first thought with you hairtailed was Lupus,
I would say you need a good rheumy, to run some antibody blood tests, for Lupus, RA, Sjorgens, Bechets, etc...

See if they come up with anything, i have just been diagnosed with APS, which is antiphospolipid syndrome, and this can cause MS symptoms.
Maybe you could both ask for testing for this, its a simple blood test to look for antibodies to anticardiolipin, and LA.
You can test positive on either.

Also for Sjorgens if the antibodies arent showing up yet, they can always do the lip biopsy, which may pick something up.

Good luck to you both, if you need any further help and i can assist just give me a shout.
Take care
Nicola
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1443413_tn?1284482646
Thank You! Sure appreciate some direction. No Primary, since I told the last one, I all but died. I'm one of the Fentanyl Pain Patch Deaths last Summer, on top of these on-going Multi-Disease Symptoms.  Unfortunately it didn't resolve all these horrific spells, it did however cost me the last 5 years, of getting no where on this Disease(s).  Believe it's to late to reverse anything now.  Was desperate to be able to present something that I can match to some of my labs. etc. Down to 112 not much left to loose now.
Your my only response, & possible answer. Thank You for your time.
hairtailed  
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Avatar_f_tn
I would just like to say, you have and still are having it rough,
I would definately say start with some antibody testing, of the blood.
Have you had any tests for auto-immune diseases? If so which ones did they do.

Please dont give up fighting for a name to your illness.

It took me 12 years off living with a mis-diagnosis, which nearly cost me my life, to me finding out what i really had all along.
It can be destroying, and i know at times it gets that rough, you feel like giving up.
The problems i had also was getting doctors to listen, and try to believe me, hence me doing a lot on my own.
I was the one to question the mis-diagnosis, because of all the rashes i was getting, and then the hair loss , like you.
I was diagnosed with MS for 12 years, and only this year found out it wasnt.

Dont give up, remember knowledge is power.
If you want to post your symptoms and any labs, tests, or scan results, i will have a look through, and maybe i might be able to she a bit off light, or uide you on what to do next.
I hope ou are well,
Please keep me posted
Nicola
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