What's my next step?

[Emorrison]

Hello everyone! I am in limbo and I'm not sure what to do next. Any help would be appreciated.
I started having seizures back in June . I was admitted to the hospital for tests. After an MRI , my neurologist declared that my seizures were non-epileptic, but that they found something else. They said I could possibly have MS, but dismissed it since I had no other symptoms.

Since June, the seizures continued and new, strange symptoms appeared. My symptoms:
Seizures
Tremors
Extreme and constant fatigue
Confusion/loosing my train of thought
Trouble walking
Muscle weakness
Sexual dysfunction
Problems with urination
Painful, burning itch with no rash

My last symptom is my most recent and caused me to look online for answers, which only led me back to MS. This connected the dots for me and now I'm very concerned.

My question(s) to you all is this:
Should I see a doctor?
If so, which kind of doctor?
Is there anything else I should be doing?

Also, if anyone else has had this burning extreme itching, do you have anything that works to relieve the itching? Because nothing is working for me.
And could anyone just maybe talk to me about what's going on with me and what to expect? I'm really scared and I just want to talk to someone.

[misslux]

I'm sorry you are going through this.

I think you should go back to your neurologist with an update on your seizures and your symptom log so that they can start running more tests.

[JerryD]

i agree with misslux. Make sure you get a very 'complete' blood test which includes vitamin D levels and B-12 levels. Also the blood tests should test hormones and cholesterol.

[22cyclist]

Your MRIs have been negative. Your weakness and other symptoms are broad. Depending on what your MRI showed, it was probably not compatible with MS. Your physician will have to make that call. Going on the internet and looking for specific terms and what may cause them may all end up related to MS as well as other diseases. That is because these symptoms are vague. For your urinary symptoms you need to see a urologist. They can tell you what exactly your urinary symptoms are from. Nonspecific weakness can mean many neurological diseases, or non-neurological conditions.

If the neurologists have told you not to worry, then don't for now. Try to stay away from Dr. Google...he will have you dead tomorrow if you don't watch out. Just report any new symptoms that come from a new area.

Take care
Lisa
Moderation Team

[MSer102]

Hi Emorrison:

I read your post and I didn't see anything there that said that your MRI was negative or that your neurologists told you not to worry.

Some of what might be going on depends on some details that you didn't tell us.

After an MRI, my neurologist declared that my seizures were non-epileptic, but that they found something else. They said I could possibly have MS, but dismissed it since I had no other symptoms.

Since you said "they found something else" in the same sentence as "after an MRI", does that mean that the something else they found was something on your MRI?

Since you said "They said I could possibly have MS" in the same paragraph as MRI and finding something, does that mean that the neurologist found something on your MRI that looked like you might have MS?

If yes, that could be a clue about what to make of your new symptoms.

MS has a particular way it looks on an MRI of the brain. It kind of sounds like your neurologist saw something that looked like MS lesions on your MRI. It seems like that's what it would have to be to explain why your neurologist "dismissed it since I had no other symptoms". So I have to completely disagree with the other poster's opinion that "it was probably not compatible with MS." There wouldn't be any reason to bring up MS and then dismiss it because of lack of symptoms if your MRI didn't suggest MS.

It's true that a diagnosis of MS depends on symptoms along with MRI findings. You didn't meet the diagnostic criteria for MS at the time so it makes sense that your neurologist didn't diagnose you with it.

It makes sens for your neurologist to dismiss MS at the time, but it does not make sense for your neurologist to have dismissed your MRI. If there was something abnormal about it (as in they "found something" that made them think of MS), that needs to be considered and followed up on.

Related to MS there's something called radiologically isolated syndrome (RIS). RIS is a situation where a brain MRI (the "radiology" part) shows lesions that are characteristic of MS but the person has no MS symptoms and their neurological exam is normal, so any indication of MS is "isolated" to the MRI findings.

So the key question here is what your MRI looked like. If your MRI looked like MS, then it's possible that you had RIS at the time. And, if that were the case, the diagnosis would be RIS because you didn't have symptoms that were characteristic of MS. Seizures aren't considered to be a symptom typical of a demyelinating event, so that's probably why it didn't count toward a diagnosis of MS.

So the follow up key question is whether your MRI was characteristic of RIS and whether your neurologist dismissed that and maybe shouldn't have. RIS isn't common and there's debate among the medical specialists about what to do about it. But IF that's what your MRI showed, the possibility of MS showing up later shouldn't have been dismissed.

Here's a link to an article from the Multiple Sclerosis Journal about RIS:
http://bmjopen.bmj.com/content/3/11/e003531.full

You have new neurological symptoms now. Those can't be logically separated from an MRI that might have suggested MS earlier even if there were no symptoms at the time.

Yes, you should absolutely see a doctor. You should see a neurologist. You didn't say if you've been seeing the same neurologist for your ongoing seizures. If you have, then you could start with that doctor.

If you would like to get another opinion you can see a different neurologist. Make sure that doctor sees your MRIs from June! In your position, I would get another opinion from another neurologist, preferably one who specializes in MS. Your local chapter of the National Multiple Sclerosis Society can give you the names of neurologists in your area who are experienced with MS.

You should also see a urologist for the urinary and sexual issues. That would be a way to either find a different cause than somethng neurological or rule out other possible causes and send the investigation back to a neurological issue like MS.

The itching and burning that come from conditions of the central nervous system (like MS) aren't occurring in the skin, so very little to nothing that is put on the skin is going to help much or at all.

People who have been diagnosed with MS who have burning and itching sometimes get good relief from an oral medicine that calms down the overaction of the nerves involved. When you see the neurologist you can ask about a medicine for it. You'll definitely have to discuss it with your neurologist because a new medicine might interfere with what you might be taking for your seizures.

In the meantime, it's a good idea for you to get your own copies of your neurology records, including your hospital records, all of your lab results, and your MRIs and the radiology report. There will likely be a copying fee, so be prepared to pay it. That's just how it is. Neurological issues tend to be ongoing and it's always best to have your own copies of your records.

[Seasha]

Emorrison - I am sorry that you have been having problems that may or may not lead to a diagnose of MS. For many of us it can be a long and winding road ahead.

Because we are not Doctors here, it is not fair to you to have conflicting opinions from posters here. MSWorld has no claim to making a decisions on someone's diagnose or lack thereof. As per our policy, please read:

MSWorld®, Inc. Disclaimer MSWorld® Inc. Information contained on MSWorld's site or participation in support chats or the use of the message boards should not be considered a substitute for medical evaluation, psychotherapy, psychological services, mental health counseling, or treatment by a qualified health care professional. Participation in services offered by MSWorld® and use of our resources is by your own choice and is not intended to provide or confirm a diagnosis, nor is any claim made as to the therapeutic safety or effectiveness of any medications, tests, course of treatment, or the subjects of any other discussions.

I'm afraid I'm going to have to close this thread, but I sincerely hope you find some answers and my advise is to see a neurologist.

I wish you wellness in the days ahead.