What acts like ms but isn't?

[dani1130]

I was very dizzy, I also fell down a couple of times and could not move my legs for 1-2 minutes. I have muscle weakness and have to hang on to walls or chairs after only about 25 feet. I have some confusion issues with short term memory. I get worse when getting out of a hot shower or hot outside. I forget how to spell simple words. I have tingling in my legs and hand. I also have tremors in my right hand. (not while at rest) I can not walk heal to toe line. I mess up when talking. I sometimes slur words like I am drunk. Or use wrong words in place of the ones I mean. Shrink for Psychic.....I finally got tired of it and when to the ER they did blood work and a ct scan. Dr comes back and says to go for MRI and EEG and sets up a neuro appt it is possibly ms. I do the test and go to the Dr. He says no lesions on MRI, EEG is fine. it is not ms. He says he will wait and see in the meantime have some saroquel and lamictal (or maybe lexapro I don't remember). Also hints that if it is all in my head the wait and see approach works best. .......so if it is not ms (hopefully it is not all in my head) what else can it be... ???

I know this sounds funny but after they said possibly ms. I looked it up and I had several of the symptoms, some I did not even know where symptoms. I have had some of these for a couple of years off and on. My husband was about ready to leave me because he thought I was going crazy. I am only 31 and should not be falling apart. A person does not have such a wide range of symptoms. ( I always say I hurt or I'm tired a lot) he thought ms seemed like a likely explanation. Now he just thinks I'm crazy again. maybe it is all in my head. I'm glad this thing has spell check.    

[Heather3418]

Hi dani,

I am so sorry to hear everything you are going through.  Of course, no one here can diagnose you, but they can offer their opinions based on what you have described.  I think we can all say that this is neurological.  That's a given.  This is NOT in your head.  These symptoms are real.  You're not going crazy.

While I agree with those that say for you to go to an MS Specialist, if you cannot afford to go to one, try to find a Neurologist that sees MS patients on a regular basis.  You can find this out, when you call, searching for a doctor.  You can ask the receptionist how many patients this doctor's sees that have MS.  Or does this doctor have any MS patients at all?

You need alot more testing to be able to figure all of this out.  The MRI you had may have been on a weak machine, which we refer to as a 1.5T (Tesla) or a 3T, etc.  It's also very important to have an MRI on the strongest machine you can get to and to have testing done with and without contrast dye of the brain and the entire spine.  

It isn't really necessary to have testing done on your lumbar spine, if they are looking for MS, because no lesions will appear there.  But from the first cervical vertebrae all through the thoracic spine, is important.  You'll need to ask your new doctor where the strongest MRI machine is located, versus where you live.  The 3T is not in every imaging center or hospital.  If he says 50 miles, then I would ask for him to set you up at that one.  I swear to you, it makes a HUGE difference, in what they can see.

Open MRI's are practically worthless.  The resolution is terrible and alot of lesions are missed.

Please do some reading up on the medical articles that have been suggested in this post.  The Health Pages that our members have set up are some of the finest explanations, I have found anywhere.

Most of all, don't forget that we are all here for you, night or day....you have a huge "team" on your side now.  If you are a member of this Forum you are family.

By the way, my name is Heather and I have been diagnosed with MS for 13 years.  Welcome to the MS Forum.

All the very best wishes,
Heather

[Deb61]

I can related to everything you've said!  It does get expensive going to doctors who don't know what they're doing, and is a waste of time and money.  

Having an MRI on an open machine is completely useless for finding MS lesions.  Plus, the contrast is a must.  As ess said, not reading the MRI's himself and relying on what the radiologist says is also a sign that your neuro isn't good.  Like ess suggested, I would cancel this appointment, and look at the health pages to find a good doctor.

My neuro is not an MS specialist, but I went to him because of what others had said.  He has a great reputation, and he is my sister's doctor.  I have to drive two hours to see (three hours from where I work), but he's worth it.  Do you know of anyone else in your area with MS?  You may consider going to an MS support group (even though you haven't been diagnosed), because you can find out who you can see that would be good.

Best wishes,
Deb

[Noelwolf]

go to another neuro doctor, I had the simalar problem, I had lesions on the brain, numbness, tingling in both arms and legs and face, and some other stuff. The first Neuor doctor dx me with SMOKERS BRAIN, because I smoke. Don't give up the fight!!

[essdipity]

It's very understandable that you don't want to waste money on doctors who do nothing. I strongly suggest that you cancel the neuro appointment you have in a few weeks, and spend that money on a better doctor. An MS specialist is best, but not all of these are hotshots either. Try our Health Pages for how to find a good doctor.

The reason I'm urging this is your statement that your doctor didn't even see your MRIs, or try to.That is not a sign of a good neuro, who will read his/her own MRIs, regardless of what the radiology report says. If the neuro doesn't know how to read MRIs, bad sign. If he's too lazy to, equally bad sign. Time to move on.

Keep us posted on how things go.

ess

[jensequitur]

Dani, don't give up - I know how difficult this can be, and how discouraging.  There's obviously something wrong, and you need somebody who will fight for a diagnosis.

Your symptoms sound neurological - if it isn't MS, there are a number of diseases that might be the reason.  However, your problem with replacing words with similar-sounding ones - were for where, heal for heel - I have that problem all the time, and it's because of cognitive problems from MS damage.

[dani1130]

My MRI was not on a closed machine. No contrast. The neuro never saw it just the report from the radiologist. I don't know if they looked at the spine or not. The doctor just had the paper from the radiologist.

I'm not sure where a good neuro is at close by. There are only about 5 in the largest town, none specialize in MS. The closest one who does is 4 hours away. I am also having to pay for this out of pocket as I don't have insurance.

I have been doing this off and on for the last 2 years and it is getting more frequent and lasting longer-just wish i knew what was going on. I go back to the neuro in 3 weeks.

[Deb61]

You must see a neuro.  Many people recommend an MS specialist, because it's a neuro that specializes in MS and is very knowledgeable about the disease and its mimics.  

First, let me mention that a negative MRI doesn't rule out MS.  My first MRI, which was completed on an open machine without contrast, was negative.  The open MRI machines are very, very weak.  What kind of machine was your MRI completed?  Did you have contrast?  

Plus, my neuro, who is very knowledgeable about lesions, was the person who actually looked at the MRI--not the radiologist.  I'm not cutting down the radiologist, because they're some good ones out there that have lots of expertise, however, I've found that there was a difference in what my neuro saw (and what he showed me) and what the radiologist stated in their reports.  

In addition, did your MRI include any pictures of the spine?  MS can occur not only in the brain, but on the spinal column.  

You MUST see a good neuro.  Yes, there are lots of mimics, but you've got some serious problems that need to be looked in to.  Quite frankly, I can't see why someone can tell you that you don't have MS based on the symptoms that you have when you haven't had a thorough exam from a knowledgeable neuro.

Deb

[sllowe]

Hi there,

Welcome!  Meg is right, and to reiterate, if you are feeling badly, please go see another Dr. It's important to document your problems in a simple listed manner.  That way when you go to the Dr. you can tell him or her in an orderly manner what you are feeling.

So, what acts like MS, but isn't? Here are just a few:

*ADEM - Acute Disseminated Encephalomyelitis
*SLE - Systemic Lupus Erythematosus
*Sjogren's Syndrome
*Myasthenia Gravis
*Lyme disease
*Antiphospholipid Syndrome (APS)

There are more, but we have a great health page that describes the above in more detail.

Hope you stick around and feel supported by our group.

[meg321]

I would not stop ther, get a 2nd opinion, 6 yrs ago i went to a neuro and he said it was not MS, so i stopped there when i should not have...6 yrs later I got my diagnosis.

meg