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Multiple Sclerosis Community
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Avatar universal

MS w/o evidence on MRI or EEG

Is it possible to have MS without any lesions showing on MRI or if the results from EEG are not conclusive?

I ask because I am tired of going to doctors just for one to say you are getting old (46 when I was told that) or for another to dope me up until I am unfunctioning, or still yet to say your blood work is normal it is just fibro.  And I hate it when they say just fibro.  Fibro is real and that is what I have thought for years was the reason I feel like crap.

OK, it all started somewhere around 5 or so years ago with all over pain and soon progressed with the following symtoms: fatigue, pain, feet swelling to the point of a burning itch, muscle spasms (all over, but especially in neck), had gall bladder removed because it was working too slow, hysterectomy because of large cysts, cervical fusion, extreme pain everywhere, walking steps muscles feel like I can not continue, severve muscle tensing in legs, and jaw, random and uncontrolled limb movement especially relaxed or sleeping, now starting to lose balance, getting dizzy, difficulty breathing, itchy skin, heat intolerance, severe rashes, welts at bra straps, waistline, or if scratched, IBS, very poor posture normally slouch or have to have arms on table.

I posted a couple other times and had two good responses and I thank you.

I had an EEG last week, waiting for results, waiting to be scheduled for MRI.  But I need to know if it is possible if something doesn't show and what to expect if something does show.  

I have felt that it is MS for years.  I hope it is not and I thank all of you who are afflicted.  I feel for you and wish each of you happier and healthier times ahead.

Any help will be truely appreciated.

Thank you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

7 Responses
1352717 tn?1276971442
Hi
I had all the same systems you had before my dx. I was in a car accident when I was 5 months preg at 31. My tests were very limited for me. I was borderline everything. Blind in one eye once. Then about 17 years later I got really stressed in my relation & my legs fell to the floor. My son took me to the VA where my records were when I was seeing a neuro there. Then they back boarded me, thinking I had spinal injury to a private Hospital. There I met the head Nero who is still my DR for 6 years. He did a complete verbal history since my childhood. Set me up for a MRI of my head & a spinal tap. He found 30 lesions on my head and a high protein count in my spinal fluid. I would ask advice for the mayo clinic. That does not sound good.
1253197 tn?1331209110
I am not a medical expert  but just someone who has MS. There are many others who have far more expertise with regard to your specific question. So my reply is just based on opinion, my own experience and what I have gleaned from other people.

I understand that there are many similar conditions that mimic some of the symptoms of MS. As you will read from many others who are in Limboland, getting a dx is not easy unless there is some evidence which is usually based on past medical history, MRI scans and lesions, vep tets, lumbar puncture (not always done) and blood elimination tests. However the dx depends on your neuro as it is a clinical opinion and so two different neuros may have differing opinions.

From what I have read it is possible to have MS without the MRI showing any lesions....but not easy to get a dx. It sounds as if your symptoms are with you all the time and I am not sure if the burning itchy skin and welts are common symptoms of MS unless you are on interferon treatment.

Hope that others can give you more detailed info and clarity.

Best wishes

Sarah
572651 tn?1530999357
Hi morgan,

You might want to read the health page on this very question -

http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36

There are also a number of other pages that talk about the diagnostic process that would be helpful.

If you do have evidence of MS on your MRI  your neuro could have  enough info between the clinical observations and the MRI to move forward with treatment. Although you don't want MS, it is so important to get the answers of what is wrong and move forward with treatment.  But it is equally important to not be diagnosed and begin treatment with the wrong course of drugs.  

The itchy skin, rash and welts don't really fit the pattern of MS but it is also possible that you have more than one medical problem going on.  

Are you seeing an MS Specialist?  I hope so - they understand that MS really doesn't know that there are age limits - I was 54 when dxd, Quix was in her 50's and Ess was even older than that.  

Whoever you see, I hope it is someone you are comfortable with and feel that you are being listened to  - that is so important.  

good luck and be well,
Lulu



Avatar universal
Thank you so much for all of your replys!  I am truely scared because my  husband has an aunt who was dx about 10 years ago and I see what she has gone through.

I have not got the results from the EEG yet and it has been over a week.  I wish they would hurry up.  Like I said all of my bloodwork has come back normal three times in the last 12 months.

The MRI still has not been scheduled and I am getting very frustrated.  I do have another question if you don't mind....they are scheduleing a brain MRI, but do lesions also show on spinal MRI's?  I have the disc from one done a year ago from my spine when problems began to get worse.

I was dx with fibro like 5 years ago but that was because of the symtoms and not much more testing.  I assume you can have both??  I have been doing lots of reading about MS, but at times that can be difficult because it seems like my vision is giving me problems as well.  I am due for my yearly eye exam so I need to get that scheduled as well.  

I do appreciate all the help, you are wonderful.  I think these forums are great.  I was on one regularly when I had my cervical fusion 2 years ago.  It is so much easier on the emotions when you have people out in the world that can help with the questions doctors don't seem to have time for.  Thanks!!!
147426 tn?1317265632
Hi, Morgan, you've gotten good responses that I would like to reinforce.  All in all your problems do not sound like MS, but let me address some specific questions.

Yes, you can have MS with a "normal" MRI, but this is uncommon.  It is usually not really and truly a normal image.

While the EEG is abnormal in 50% of people with MS there is not a pattern on the EEG that points toward MS.  It can have all sorts of abnormalities, so the EEG is not a good test at all to show MS.  It is really only good for seeing if any of your problems are due to seizure activity.

There are no blood tests that one can point to to show or indicate MS.  

There are many of the things you suffer from that suggest that your problems are NOT due to MS.  Rarely does MS appear with all over symptoms like pain.  The pain is almost always localized to specific parts of the body - which can be different for each person.   This is because the disease causes just localized areas of damage and those are the ones that show the symptoms.

Rashes are never a part of MS, but could be due to medications taken for MS.  So, that includes hives, welts, and other kinds of skin problems.  

The gallbladder, need for hysterectomy, nor the need for the cervical fusion would not be related to the effects of MS.  The swelling of both feet would not usually be a sign of MS.  Poor posture is not a particularly strong sign of MS.  In fact, the extehnsor spasticity which is very commom, tends to make one site up even straighter.

That pretty much leaves you with the severe pain, weakness, involuntary limb movements, difficulty controlling muscles needs to be investigated.  

The fatigue is common to many neurological diseases and is not a good clue.  Heat intolerance can be xeen in many autoimmune and neuro diseases - so that does not help either.

Lesions in the spinal cord are stronger indicators of MS than even brain, because fewer of the diseases that mimic MS cause lesions there.  So yes, spinal cord lesions do occur often in MS.

I also wish that poeple never referred to Fibro as "just Fibro".  It is a very debilitating disease which can co-exist with any other autoimmune or neurological disease.

What abnormalities have shown up on your neuro exam?  What are your reflexes like?  The neuro exam should give clues to what is going on, yet so many neuros skim over the exam as if it weren't important, relying far too much on the MRI.

If you are having uncontrolled movements it could be helpful if some would make a video of them so the neurologist could see it.  This may be excessive limb movements in sleep or RLS - Restless Limb Syndrome.

Again, I did not get even an inkling that you have MS from what you have said.  Clearly something is happening, but it does not suggest MS to me.

I hoep this helps.

Quix
Avatar universal
Thanks
911669 tn?1294099188
Hi Morgan,

Sorry to hear about all your symptoms.

I am relating this comment to your skin rashes and IBS.  I believe this is related to the autonomic response in immune system.  IBS is also an immune system disease.

I have found on the internet by Googling--MS and skin rashes.  

Diagnosing MS

MS is sometimes is misdiagnosed with porphyria because of the similarities of symptoms and damage caused to the Central Nervous System. Porphyria is a broad term referring to any of several hereditary disturbances in the liver's heme-making processes. Heme synthesis commences in the liver in response to the presence of toxins requiring neutralization (stress hormones, alcohol, sulfonamide medications, infection byproducts, barbiturates, etc.). The acute porphyrias damage nerves.

Symptoms, beyond those commonly associated with `MS have been observed such as hive-like skin rash following sun exposure, abdominal pain and digestive disturbances.

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