New here,possible MS diagnosis

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New here,possible MS diagnosis

Postby tom88 » Wed Sep 04, 2013 2:12 am

Hi everyone, I am a 25 year old male and I began experiencing several MS symptoms a few years ago, I just recently started seeing a neurologist because my symptoms are getting worse. It began with my left side of my body, starting in my hands with twitching, numbness and spasticity as well with weakness in arms. Its to the point now where I have to use my right hand for everything now and it stinks because I am left handed. Also my right arm is starting to get some of the same symptoms as my left arm. Other symptoms that started a few years ago was urinary and bowel incontinence, I seen a urologist and did several tests and was diagnosed with neurogenic bladder. I also had a colonoscopy and results came out with mild chron's disease. Also my left leg under my knee the muscles will twitch randomly and I will lose balance, I lost track how many times I almost end up falling down the stairs. I have had a few tests done at my neurologist appointments so far, I had an EMG, EEG, and blood work done, the EEG and blood work came out normal, but my EMG was abnormal. So my doctor ordered an appointment for me to have a brain and spine MRI done and the dx on the sheet the doctor gave me had a list of the symptoms I already have and next to that said to rule out MS, which got me kind worried. I have my MRI scheduled tomorrow and I have to drink contrast, which I am not sure why I have to drink that for. I will end up having my follow up appointment with my doctor with the results of the MRI in 2 weeks but that just makes me kind of nervous for waiting that long. Also I have been doing research online about MS and the symptoms fit me very well. I'm also very heat sensitive, it makes me feel a lot worse. I also get dizzy, light headed, fatigued a lot during the afternoons mostly with headaches that come on randomly, and of course the heat trigger all of that and makes me feel miserable. I do have a question though, is it still possible to have MS with a normal EEG and normal blood work? and not to mention I did see a chiropractor a few years ago as well and found out I have scoliosis in my back, and wondering if its possible if some of the symptoms could be coming from that? btw ty for reading my post, I appreciate the feedback.
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Re: New here,possible MS diagnosis

Postby NHE » Wed Sep 04, 2013 3:48 am

tom88 wrote:I have my MRI scheduled tomorrow and I have to drink contrast, which I am not sure why I have to drink that for.


Welcome to ThisIsMS. The contrast agent, usually gadolinium, helps highlight active lesions so they can be distinguished from old, inactive lesions. It shows where white blood cells are crossing the blood brain barrier to enter the brain. Note that it's best to stay well hydrated after the MRI with gadolinium to help the kidneys flush the gadolinium out.
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Re: New here,possible MS diagnosis

Postby euphoniaa » Wed Sep 04, 2013 7:05 am

tom88 wrote: I also had a colonoscopy and results came out with mild chron's disease.

I have had a few tests done at my neurologist appointments so far, I had an EMG, EEG, and blood work done, the EEG and blood work came out normal, but my EMG was abnormal. So my doctor ordered an appointment for me to have a brain and spine MRI done...

I have my MRI scheduled tomorrow and I have to drink contrast, which I am not sure why I have to drink that for. I will end up having my follow up appointment with my doctor with the results of the MRI in 2 weeks but that just makes me kind of nervous for waiting that long.

I do have a question though, is it still possible to have MS with a normal EEG and normal blood work?

...and not to mention I did see a chiropractor a few years ago as well and found out I have scoliosis in my back, and wondering if its possible if some of the symptoms could be coming from that?


Hi Tom, and welcome! Sorry that you might have MS, and that is up to your neuro to decide, but I thought I'd stop in with a couple of comments, so I left part of your note above. One of the problems with MS is that its symptoms mimic most all other neurological diseases -- including ones of the peripheral nerves. And...there is no definitive test for MS, so they test us to rule out other medical conditions. Your EEGs and blood work were to rule out other conditions, and the abnormal EMGs show peripheral nerve issues, not MS. I was diagnosed with both MS and a hereditary peripheral neuropathy at the same time, however.

Next, yes, your other diagnoses of Crohn's Disease and scoliosis (plus the abnormal peripheral nerve issues) all could be contributing to your symptoms. But...you could still have MS, too. Dunno yet.

Next, as far as I know, gadolinium is given through an injection halfway through your MRIs, and you don't drink it. NHE is right with his comments, though.

It sounds like your neuro is right on top of things and ordering the correct tests. The MRIs of the brain & spine both with and without contrast are the best tests for MS, although even those can't give a 100% diagnosis since there are many reasons for lesions in the brain & spine. MS lesions usually have a distinct pattern, though.

Also, I've always been able to pick up my radiologist's report and CD of my MRIs at the hospital within a couple of days afterwards. You're probably better off to have the neuro explain them, because the radiologist generally notes what he/she notices, and does NOT make a diagnosis in their reports. They may say what they see is "suggestive of a demyelinating disease like MS." But you should definitely have copies of your own for your records.

There's plenty of info here at the forum, and many of us have had MS for years (about 40 years for me), and we're still doing okay. Good luck tomorrow, and keep us posted!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: New here,possible MS diagnosis

Postby tom88 » Wed Sep 04, 2013 8:27 pm

NHE is correct about the contrast, I had my MRI done today, I have not found out anything new today, I will have to wait until the September 18th for the results.
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Re: New here,possible MS diagnosis

Postby tom88 » Tue Sep 10, 2013 3:34 pm

I have a question. I had my MRI last Wednesday and haven't heard anything back from the test results, does that mean that it came back negative? I called my doctors office earlier to ask if they had the results in and they said they do and they asked if I wanted to know over the phone, I told them yes I do, because my next appointment isn't until the 18th of September. So they said my doctor will call me back tomorrow to let me know. I'm just wondering if my MRI came back negative because of the wait, or that my doctor probably had more pressing matters to deal with?
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Re: New here,possible MS diagnosis

Postby jimmylegs » Tue Sep 10, 2013 6:49 pm

probably just busy. it's hard to be patient, but I think with an mri they would call either way.. eventually.. to let you know what the findings were.
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Re: New here,possible MS diagnosis

Postby 1eye » Wed Sep 11, 2013 11:36 am

Separation in time and space. I think they need 2 MRIs or 1 MRI and something like a spinal tap. Likely they have to be from 2 complaints separated in time. You may lose your life insurability and possibly your drivers license. Don't be in a hurry to get diagnosed with it because it's a 1-way street. It's clinical only. There is no one test for it. Its cause is unknown. They say you die with it but not of it. They say. YMMV. I am not a doctor of any kind. Do not take anything I say as authoritative.
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Re: New here,possible MS diagnosis

Postby tom88 » Wed Sep 11, 2013 1:39 pm

Well, I called my doctor, he said he didn't want to discuss it over the phone and to wait until my appointment next Wednesday, though I'm not sure if that's a good thing or not.
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Re: New here,possible MS diagnosis

Postby eric71 » Wed Sep 11, 2013 5:12 pm

Hi Tom,

I'm new here as well and also seeing a neurologist for a lot of the same symptoms - weakness in the limbs, hand tremors, unsteady gait - plus confusion, speech problems, and a load of other issues. My therapist has MS and we spoke about it last night. He said that it does take time to diagnose the condition but, the doctors have to be looking in the right places. I've had a few MRIs, but these were for possible seizure activity. I also had a Video EEG done, over a 72 hour period, which came out normal, according to the Neuro-Psychiatrist I had been seeing. The problem with the VEEG is that I was having multiple episodes of spasms, twitching, kicking, and tremors plus confusion and unsteady gait. Here's the kicker though, I'm also on four different medications, one of which is used for treating Parkinson's (Mirapex). Going with what Euphoniaa said, it's possible that both of our symptoms may be a result of other conditions, or medication side effects (in my case). I can absolutely agree with that, which is why I've decided to get a second opinion from another neurologist. Some will say that you are your best doctor, which isn't very true. Also, searching the internet in order to understand what's going on with you, or me, can result in near-hypochondria (not to diagnose you in any way or say that's what you're dealing with, as I don't know you at all). I've had both types of MRIs - contrast and non-contrast - which came up inconclusive. I'm sure they'll want to do another one with a possible spinal tap (yikes).

Like you, I want to know what's going on. Walking around the office where I work, trying to remember what I was supposed to be doing or where I am is terrifying sometimes. I constantly forget things, the easiest of tasks that I do every day. I stumble, my right hand shakes, and the dizziness is starting to irk me. Even going to the bathroom takes time (urinating) - pardon the graphic tone. I'm 42 and have been healthy for most of my life. I have had a nice round of head trauma in the past though, which is another factor to look into. In any case, it definitely takes time to diagnose what's going on. I've heard of people who have gone through seven or eight doctors and 15 years before they were diagnosed. It's a very long and laborious road from what I hear. I can only hope it comes out positive on both sides.
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Re: New here,possible MS diagnosis

Postby want2bike » Thu Sep 12, 2013 9:47 am

Have you been tested for gluten tolerance. Gluten can be a big problem for Chron,s disease. What ever the problem is diet is the solution. When you find the correct diet you will get better. Let your food be your medicine and your medicine be your food.

http://www.common-sense-health.com/croh ... ergies.htm

http://www.youtube.com/watch?v=oqbrNmhvVjU
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Re: New here,possible MS diagnosis

Postby tom88 » Thu Sep 12, 2013 2:16 pm

Sorry 1eye for the impression of me wanting to be diagnosed quickly. The reason why I want to know the results quickly its because I want to know what's wrong with me so I can take medications that will ease my symptoms.
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Re: New here,possible MS diagnosis

Postby tom88 » Wed Sep 18, 2013 11:53 am

Well I got the results back from my mri today. Unfortunately it's hard to understand my doctor because he doesn't speak English very well, but what I did understood was that there was evidence in my mri that I probably do have MS and now wants me to get a spinal tap done next week for more evidence. I asked for a copy of the results but I have to pay $35, so I'm going to wait until all the tests are done and then pay $35 for a copy
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Re: New here,possible MS diagnosis

Postby Ladymac » Wed Sep 18, 2013 12:54 pm

Hi tom88,

Any doctor that charged me to give me a copy of the test he just did on me I would fire. It's one thing having to pay to get a copy of all your medical records, but not to have a copy of the test he just did. That's why I always ask at my visit for a copy of that test and office notes. I keep a binder with everything in it. Same with lab tests. When I go in and get the results, I ask for and receive a copy of that urine or blood tests.

Is the doctor that ordered the test a Neurologist who specializes in MS at an MS Center or is it a Neurologist who "sees" MS patients?

It makes a BIG difference in how things are sorted out because the MS Neurologist Specialist at an MS Center is usually totally connected with the latest research, the center participates in clinical trials and has all the supporting services and staff that focuses on patient needs and specialists.

I do not subscribe to MS Specialists only see MS so they diagnose MS. Since they diagnose and treat MS, they read their own films, usually with you there, and explain in laymen's terms what they are seeing or not seeing.

The spinal tap may or may not show the Oglibands. Mine didn't. But my MRI showed the lesions in the appropriate places along with the McDonald Criteria in time and space between flareups and remitting back to baseline.

Good Luck.
Blessings,

Ladymac
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Tecfidera Started April 2013
:)
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Re: New here,possible MS diagnosis

Postby tom88 » Wed Sep 18, 2013 1:32 pm

I am not sure if my doctor is just a normal neurologist or Specializes for just MS. My insurance is Medicaid and my neurologist was referred from my physician doctor that I get my physicals from and I can only go to doctors that are covered by my insurance. Though I just thought of an idea of calling my physician and see if I can get free results from him.
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Re: New here,possible MS diagnosis

Postby tom88 » Tue Sep 24, 2013 10:12 pm

I had my 2nd MRI yesterday, this time it was for my lower back of thoracic spine. Also this time I got a disc with pictures on it, I taken a look at it, but wasn't sure what I was looking at. Though a few pictures I looked at also shows how bad my back is.

here are links to a few images:
http://imageshack.us/f/547/s2l7.jpg/
http://imageshack.us/f/818/twbe.jpg/
http://imageshack.us/f/843/dxk1.jpg/
http://imageshack.us/f/513/0vkd.jpg/

any feedback that you can provide is appreciated. I don't see my neurologist until October 18th, and I have to go in for spinal tap aswell, so I am nervous for the end results.
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