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Avatar universal

I have 5 O-Bands

I am just starting to research my symptons, I just started to see a neurologist 6 weeks ago.  My symptons are droopy eye, blurred vision in that eye, My hand are numb, my legs feel weird - like it's a lot to press the accelerator pedal in my car.  Sometimes my nerves feel raw - especially in my legs.  I have trouble swallowing, and every time I eat or drink, it comes back into my mouth.  The Brain MRI was "normal", showed only 1 white lesion and no where where it should effect my vision.  My spinal tap showed 5 bands.  I have had lots of blood work and swallow test (showed a small hernia), I have had an endoctomy, with biopsies that were fine.  My doctor is convinced I don't had MS or Lyme - but is doing an MRI on my neck.  Why would he think no - everything I am reading - leans toward MS.
22 Responses
1936411 tn?1333831849
Hi Mak. I'm so sorry to hear about your symptoms. It sounds like you are going through a very difficult time. I would be scared, as I'm sure you are. I'm glad to hear that your doc is still running testing, though.

You say your doc is convinced it's not MS or Lyme, but the fact that he is requesting a c-spine MRI tells me that he knows that something is going on and is still trying to find out what. Maybe he's not as convinced as he seems, or maybe he's got some information that's leading him down a different path (so many things can cause the symptoms you're experiencing). If you can have another discussion with your doc, you might ask him what he's currently looking for or what he thinks might be causing your symptoms (if not MS or Lyme, then what could it be?).

Here on the forum, we are not doctors but patients with experience to share and words of support. All I can offer you right now is encouragement, and I am encouraged by the fact that your doc is continuing to run tests.  The swallowing problems can create a choking danger, so I'm also glad to hear that you had a swallow test because that tells me that someone is looking out for you. If you are ever concerned that your swallowing problems could create a choking hazard, be sure to discuss that with your doc.

With neurological problems, the road to diagnosis is usually long and requires way more testing than any of us realize when we start our journey. I'm glad you found our forum, and I encourage you to periodically share your test results and ask questions. Hopefully we can help.

198419 tn?1360242356
Hi Mak,

Adding on a welcome to you - Jane gives great advice. I would only add that it would be good to know if these 5 o-bands were unique to the CSF, i.e., not also in the blood serum.

That makes a difference. Because if in the CSF, and not in the serum then they would conclude that the banding is of CNS origin. If in both, leads one away from that.

Wishing you well with this potentially long work-up, and hope too we can help you through.
2143641 tn?1396678143
I subscribe to everything Jane said except to ask the Doc. why he's doing MRI I think you did well not to ask and trust he's doing what he needs to do in order to come to some conclusion.

I think it's good that your Doc. didn't rush to conclusions I've heard of people diagnosed with MS or ALS without any of the specific tests was done.

Like Jane said there are many different conditions that can mimic MS symptoms, generally they fall into two categories: auto-immune syndromes or direct infections of the central nervous system.

In your case it sounds to me like auto-immune if all blood works were negative. have you been tested for specific antibodies? complements system? liver function?

To answer your question why not MS: apparently MS can give almost every and each neurological symptom out there, including yours but maybe your Doc. based his consideration on the brain MRI

[in MS] "Several different factors can contribute to swallowing problems, but the main cause of dysphagia are lesions in the part of the brain that controls swallowing (primarily the brainstem) or the nerves that provide feedback to the brain."

He might have thought that it is caused by some other type of syndrome, he also might have taken into consideration the progression of the symptoms which you haven't specified here.

What is your age?
When did you begin having the first symptoms and what was the progression?
Did you have any other problem before even apparently small like weak bladder, coordination issues?
Do you notice any change in your mental status during the symptoms, confusion, brain fog, lack of short memory?
Is there anything out of range in your blood tests, how long after the first symptoms did you take them?

If you haven't already, try a simple neurological test, the Romberg's test, look it up on Youtube to see how it's done! it will take a minute.

Well I hope to have helped in any case I wish you good luck and fast recovery!

Avatar universal
I just turned 53.  I am female.  I believe he is doing the MRI of my neck to help rule out MS.  He is also doing some sort of "nerve sensory" test on my hands and legs as well as a needle test on my muscles.  Both will be done Monday he said that my hands show signs that would be consistent with carpal tunnel syndrome but as my legs have symptoms as well that makes him skeptical.  The symptoms starting with my throat, then my eyes, then my hands and legs.  At first he thought myastina gravis but the blood work said no.  The next thing he will probably do is a test to see the reaction of my optic nerves, with a special test with a changing checkerboard.  I'm really not sure.  Shell, I will ask about wether the bands are in the CSF and not the blood.
Avatar universal
I am so sorry to hear you are going through this. Limboland is a tough place to be. It is good that your doctor is looking to be confident before saying a diagnosis.  While your symptoms do sound consistent with MS, they don't really sound like Lyme. While each individual symptom could possibly be Lyme, the collection of symptoms doesn't sound like it.  I did a work up for MS, but was diagnosed with neurologic Lyme.

I do not have anywhere near the depth of knowledge of MS as most of the folks here, but I do know a lot about Lyme.  Did you get tested for it?  If so, do you know which test was run?  People with primarily neurologic symptoms of Lyme are more likely to test false negative.  I would be surprised if you had it, but then Lyme, like MS, can be surprising.
Avatar universal
Limbo land is tough but it's amazing how many people go through it.  My doctor has been thorough with his information to me, it's just so much to absorb.  He drew me a picture on his table of the gel test to show the bands.   Knowing a little more I do have more questions.  He has ruled a few things out based off the brain MRI.    I was tested for Lyme off blood and spinal fluids.  Being new to all this testing, I just thought that was it.  What test was done for you.  And was it your neurological doctor? Or was it a homo pathetic  based person.  My friend went to one that diagnosed both her and her daughter, when boston children's hospital said it wasn't.  She has been doing amazing on the antibiotics.   What are your symptoms?
2143641 tn?1396678143
I met an American girl here she had some of your symptoms they began for her some months ago maybe end of last year. droopy eyelid (ptosis) , double vision and numbness here and there. negative to MG antibodies. negative to ELISA and Lyme. she was told it was MS by some, unknown for others, well eventually now she seems to have recovered spontaneously, hopefully it will stay like that!

the needles in muscles test is probably EMG, likely it will be negative. ask someone in your family to test you with the Romberg's test, it is indicative of the type of problem in your eyes and the type of auto-immune syndrome.

Avatar universal
that's encouraging on your american friend.  If I do the Romberg's test, I immediately start to sway like I will fall down - what does this mean?
My doctor does expect the EMG to be negative.  Iseem to also have a hard time getting my thoughts out lately.  Not normal for me at all.  My memory has always been amazing , and now I can't remember much at all.
2143641 tn?1396678143
Positive to Romberg's test often goes along with problems in the optical nerves. It is also very common in most auto-immune syndromes but not specific of all. I learned about it reading about the Miller-Fisher syndrome in which Romberg's is a specific symptom.

You should do full eye examination there might have been small changes in your vision or visual field that you haven't even noticed.

The fact that the MRI was negative is encouraging so far it seems like a auto-immune reaction is involving your optical nerves and the rest but it could regress spontaneously.

The symptom I experienced of lack of memory is very specific on the short term memory, a sort of mini-Alzheimer. for example I would be driving the car and the spin around the bloc a couple of times before I could concentrate on where I was going. Fear and consequent irritability can also be present.

2143641 tn?1396678143
by chance were you given the vaccine shot last year?
Avatar universal
you mean vacinnated against the flu? - yes
2143641 tn?1396678143
yes the flu that was due last fall right? when exactly were you given the shot? how long after did the first symptoms appear ? anything from headache on.
Avatar universal
I had the shot mid October.  I believe I was okay through the holidays, we traveled to Europe, so it was a little stressful (juggling home responsibilities) though a lot of fun.  I'd say I started feeling bad in Feb or March - started with my throat (felt like a ball was trapped, intermittenly) , then my eye started drooping, then my limbs.  Though thinking back I was also very tired (and still am) the king where you can't stay awake watching TV with the family.  My vision is just awful, not sure when it started was really thinking it was just that I was getting old
2143641 tn?1396678143
well there are some auto-immune syndromes like Guillain-Barrè and Miller-Fisher that are often if not always triggered by infections. they happen more frequently during pandemics. any ways they are treated successfully with Plasmapheresis. This could apply to other auto-immune "reactions" that follow to an infection I don't know...

any ways your symptoms are important and they seem to lead to an auto-immune problem. it could regress spontaneously like it happened to my friend or it could be the early manifestation of something that will get worse over time, I don't think there's any Doctor out there who would really be able to tell you for now!

if you want let me know how it goes, best of luck!
Avatar universal
So today, I had the EMG and a EVG. Both ere negative and painful.  I then had a MRI on my neck.  I'm thinking he's just not really sure which way to go with this
198419 tn?1360242356

Hi again. I have to say how great and versed our members are here - so much more additional info you were give that is spot on.

Suuuure sounds like you have a "super" thorough neurologist!

I'd trust the care :)

Avatar universal
Thanks, it is amazing to me, just how much I have taken for granted my own medical care before this.  I think the thing I like about him, is he is not quick to jump and lead me thinking it's one thing or another.
I appreciate all the help and support I have found on this forum
Hope to get my MRI results tomorrow

Avatar universal
So I have had another MRI with contrast that shows 2 possibly 3 lesions.  My EMG, my EVG and my evoke potentials all are normal.  My eye is still droopy, my hands tingle, my legs have a lot of pain all day, I feel jittery I side my my self, sometimes I tremble and my dexterity in my fingers is awful.  Last week my neuro gave me an hour if his time talking and explaining, asking questions.I think he's really trying and I'm not sure I could do better any where else. He retested me for lyme as well as specifically for musk myasthenia gravis.  This week my other eye became swollen an d droopy as well as the bridge of my nose, but the droopiness has gone and just the bridge is swollen still.    My question to all of you who suffer daily, does this sound like your symptoms?  My neuro said if I have MS , it's early onset because of the lesions.
I feel so bad asking thses questions of you, when you have your own ailments and I don't even know how you all feel.
2143641 tn?1396678143
that's good that the droopiness is gone and blood works didn't reveal signs of an irreversible autoimmune disease.

some of my symptoms were similar to yours, I didn't have droopy eyes. my eyes are burning all the time though I don't know if it connected with the rest.

I seem to be healing spontaneously, the same can happen to you but it will take time. a way to speed up recovery in some autoimmune "reactions" is Plasmapheresis  
Avatar universal
When I say the eye isn't droopy I mean only the eye that became droopy this week, the original droopy eye stays the same, it is still droopy.  But it is still a relief.  Have you been diagnosed with MS?
2143641 tn?1396678143
no, my MRI is clear only some spinal disc herniations. I think it was something similar to Guillain Barré syndrome, I haven't had LP they said it was risky, and any ways Doctors said everything is fine and just dumped me.
667078 tn?1316000935
It sounds like the Doctor is doing all the right things. There are over 800 Neurological disorders and over 30 MS non neurological  MS mimics. It can take awhile to sort out. The not knowing part is very hard.

MS follows a different path in all patients. It depends on which nerves are affected. Sometimes when the inflammation goes away some of the symptoms go away. No two cases are the same. People with MS probably have a genetic mutation which gets set off by something in the environment so It is not like you can avoid it if it is in your genetics at this point. Doctors do not even really know what MS is except it can attack the optic nerve, brain, and or spinal cord. It does not attack all three in all cases. Sometimes it comes on slowly and sometimes fast. I had it from the age of two and did not even know it since I grew up with it and did not know anything else.  They had no MRIs in 1965 when I had my first attack, plus no one though children got MS in those days.

It took two years from 2007-2009 of testing to be diagnosed. I am very sorry you are going through whatever this is. I am glad your Doctor is being proactive. I had to wait six months between abnormal tests. I saw dozens on Neurologists. It was very scary. The diagnosis was a relief. The not knowing was hard. Three years later I am living quite well with my MS. I have had to make adjustments. I am still walking and took up horseback riding a couple years ago.

My Doctors told me there is something Neurologically wrong we just do not know what it is. I was told I probably had MS for two years before they were sure. I had all the tests you have had and tons of blood work. They even did more blood work after the LP.

I hope you get an answer and treatment soon. Many of us understand how hard it is to go through diagnosis. Some come to the Forum and are diagnosed with MS others find it is something different.

Ask all the questions you want. We may not know the answer. We do care.

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