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14471348 tn?1434687592

Can my peripheral neuropathy become MS? Or be MS?

I posted about my symptoms before.

http://www.medhelp.org/posts/Multiple-Sclerosis/Worried-about-MS/show/2640831#post_12829779

Since then, I have seen a neurologist who did an MRI of my back, blood work, a carotid doppler, doppler transcranial, EEG, EMG/NCV with F on both my arms and legs.

The bloodwork proved it wasn't rheumatoid arthritis, lupus, Lyme disease, a vitamin deficiency, or a thyroid disorder. Also, both my neurologist and psychiatrist do not think the symptoms are caused by my bipolar meds (depakote, lamictal, and klonopin).

Most tests were normal, except for the EMG/NCV on my arms and legs. I have some carpal tunnel syndrome, and have lost some nerve function in my legs (which explains my dizziness, vertigo, and loss of balance). It may also partially explain my chronic migraines. However, since everything else was normal, my neurologist says that it's most likely progressive.

He's ordered genetic testing: CMT Advanced Evaluation (Charcot Marie Tooth disease). There are apparently 70 disorders that fall under that category.

Yet, I am unsure whether it IS just peripheral neuropathy. I know that the peripheral nerves are damaged, but I can't help wondering if symptoms can appear before damage to the central nervous system shows up on an MRI or before myelin damage is picked up on a test. It also doesn't explain other symptoms: bladder control issues (feeling like my bladder is full even when it isn't, bladder being completely full and not feeling like I have to go, thus experiencing incontinence), mild to severe loss of appetite, major sleep disturbances, mild to moderate upper and lower back pain, slurred speech, blurred and double vision.

A new symptom is the feeling like someone is tightening and loosening a corset, and my stomach muscles are tightening and retracting.

Thoughts?

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667078 tn?1316000935
The genetic testing is totally new to me. I am not sure what they are looking for. Sounds like they are testing you for many things. With MS the diagnosis can take years. With many illnesses it take years to get a diagnosis. It is hard not to get freaked out. I did when I did not know what was wrong.

Alex

Helpful - 0
1 Comments
I understand it's probably not MS. But when most major causes were ruled out and I was told it was probably a rare disease, it did cause a lot of fear. I've been trying to limit myself to researching things on the internet. But I know it's not related to my mental illness, though their may be some overlap. I am concerned that, regardless of what it is, that some of the best drugs will interact with my current meds. I'm finally on a good regimen, have a great doctor. I believe my bipolar is under control for the most apart, and that my depression and anxiety are situational since I have no idea what's going on. I'm going to try to do more writing and search for freelance writing gigs to take my mind off it. I'm applying for a service dog, and I think that process will help. It looks likely that I'll be approved, but I have to be prepared for the possibility that it might not work out.
987762 tn?1671273328
COMMUNITY LEADER
"I have to go through expensive genetic testing and I'm nervous that down the line there might be an abnormal MRI/spinal tap/etc."

If you are referring to MS, from everything you've mentioned MS would be very unlikely, and MS isn't associated with the hereditary diseases. MS isn't something you should still be concerned about, you have no suggestive/consistent medical evidence of MS despite all the different 'symptoms' you have and the evidence you do have is suggestive/consistent with an alternative medical explanation.

Be conscious of your mental health situation deteriorating and or inadvertently hyper focusing on what feeds your fears, your mental health needs prioritising over any 'possible' medical condition yet to be determined. If you can, please try to take a step back, only focus on what you absolutely know to be true and don't engage in behaviours that encourages your anxious thoughts, be proactive with your mental health!

Cheers........JJ

Helpful - 0
14471348 tn?1434687592
I have had an MRI it was normal.
Helpful - 0
1831849 tn?1383228392
I would look for a second opinion as soon as possible.

Kyle
Helpful - 0
1 Comments
I probably will, once the tests come back. However, if i have one of the mutations, I definitely have some version of Charcot Marie Disease. If the tests come back negative, I'm uncertain what else he would test for. Do you think suggesting an MRI of my spine is a good idea? And requesting yearly MRIs of my brain?
4943237 tn?1428991095
It would seem to be very premature to be going down the genetic testing route if you haven't had an MRI yet??
Helpful - 0
667078 tn?1316000935
Peripheral neuropathy is not usually part of MS. MS is more the centeral nervous system not the peripheral nervous system. It can sometimes be involved but it is rare.

Alex

Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi,

To be totally honest i do not at all understand why or how a neurologist could make such a dire statement "since everything else was normal, my neurologist says that it's most likely progressive"

What on earth could that type of prediction be based on, if it's before there is any determination on actually what has caused you to have abnormal EMG and from what you've mentioned, you don't seem to actually have any abnormal brain and or spinal evidence damage......did you have 'any' neurologically abnormal 'clinical' signs found with by neurological assessment?  

In regards to your Q about MS, people who have MS typically don't have evidence of actual nerve damage, if you have peripheral nerve damage that would typically point away from conditions like MS not towards, as it is more suggestive to alternative conditions, it's also unlikely that someone would have so many different symptoms and not have any evidence of lesions on their MRI's.

It's a bit premature to have completely ruled out your medication as a potential explanation prior to the causation being determined, when many things affect nerve test results even body temperature, medications for mental health conditions are known to because they actually affect the central nervous system and often cause adverse symptoms.  

I really think you should try to be open minded as to what is going on, your scheduled for further tests which may find the answers.......

Cheers.......JJ
Helpful - 0
1 Comments
I'm trying to be as open minded as possible. The doctor found that the EMG results were abnormal because my body did not react well to the electric shocks/had a delayed response. In my legs, the nerve function is slowing down and every other cause of peripheral damage had been ruled out. I'm just really, really scared because I have to go through expensive genetic testing and I'm nervous that down the line there might be an abnormal MRI/spinal tap/etc. Trying not to get worked up about the waiting process, but it's very difficult.
1831849 tn?1383228392
Hi -

You sy the your emg.nvc was abnormal but don't say how. It would be helpful to know.

Kyle
Helpful - 0
2 Comments
I have a delayed response to electric shock signals, which means the nerves are slowing down. They ruled out a lot of things that could cause this. So it's most likely an underlying hereditary disease. But I'm unsure which one. The genetic testing is just to put a name on the disease so we know what's going on. He said to be prepared for the possibility of no treatment being available, since not all of the things he
I have a delayed response to electric shock signals, which means the nerves are slowing down. They ruled out a lot of things that could cause this. So it's most likely an underlying hereditary disease. But I'm unsure which one. The genetic testing is just to put a name on the disease so we know what's going on. He said to be prepared for the possibility of no treatment being available, since not all of the things he's testing for have treatment available.
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