my story, mri and questions

[kootergirl]

Hi everyone,

   I guess i am still in limbo though my GP has diagnosed MS. This all started about 8 months ago when my headaches and eye pain became unbearable. I figured I had severe migraines. I will spare all the details but Jan 1st I had several episodes of cold sweats confusion and terrible vertigo. The next six weeks i fought terrible vertigo, numbness, joint pain and vision problems that I find very hard to explain but included aura, light sensitivity  and blurring. At that point I was sure I had a brain tumor. I am a mother to four small children and at the time my husband was working out of town. I was so afraid and no doctor would give me the time of day. Then I started to get better slowly. All but my vertigo disappeared. Even my headaches seemed to go dormant.
   Sometime the end of march I came down with a stomache flu and about a week later all my symptoms returned worse then ever and this time I suffered with severe nerve pain. So hard to describe but it felt like my roots were in a electrical fire storm. It hurt to move. I had numbness on my whole right side.  I also started suffering with Trigeminal neuralgia and problems with my short term memory. At this point I had found a great doctor who listened to every symptom and really felt I had MS.

Before all of this began I was healthy  and full of way to much energy. Now getting through the day is nearly impossible. I am bone tired most of the time. If I get to hot or tired or stressed my symptoms tend to really bug me. I have noticed that I am now walking with my foot pointed to the side and seem to be lifting my leg funny,  My doctor has tried very hard to get me seen by a neurologist, however, I live in Canada and the waiting lists are ridiculous.  

I had a head MRI without contrast june 1st  these are the results.

Findings: There is a tiny T2/FAIR hyperintensity within the high right frontal lobe without surrounding mass effect, approx 1mm in size. Although non specific , this is within normal imaging parameters. There is an additional similar hyperintensity within the right aspect of the midbrain, possibly resenting a perivascular space. Demyelination cannot be totally excluded although the distribution is not characteristic of MS .

My GP says based on these findings she is sure it is MS. I realize however, she is not a neurologist .

I guess my questions are.

Why are these hyperintensitiy's not characteristic of MS? Does anyone know what  resenting a perivascular space means?

I get a red rash across my face when my symptoms are at there worst
could this be Lupus?

I get hot flashes and seem to have trouble regulating from hot and cold. I am not in menopause and have had all the thyroid tests. Is this a regular symptom of MS?

What tests should I ask my GP for while waiting for the appointment with the ms clinic.  Should i ask my Gp for an MRI with contrast?

Also I have been having this strange pain across my midsection. It feels like one big long contraction  could this be the ms hug?

Sorry for the length I think I just needed to tell someone how crappy I feel. My husband is great but the rest of my family is very unsupportive and I am feeling pretty alone at the moment. I turn 30 in a couple of weeks and I am desperate to find answers so I can move forward.

Cheryl

[kootergirl]

Thank you all for your advice and support.

At this point I feel my situation is beyond what my GP is able to deal with. I am trying to get in to a very highly regarded GP who I believe can get the ball rolling. I will also call the MS Clinic tomorrow and see if I can push a little harder. I have decided that the next time my right side goes numb or I have a severe migraine I will make the trip to the ER. My husband is going to come to my next appointment and confirm how serious my symptoms are. I hate to complain and my list of symptoms is a mile long, so i don't what to seem like a hypochondriac. Maybe I have be to passive in the situation and I realize as said in the other threads I have to be my own advocate.  Can my GP order the LP ,lyme and Ana tests? Can a optometrist preform a VEP test?  Doublevision is there a neurologist you can recommend in the area? I will look over the health pages again as I must have missed what I was looking for.

Thanks again
Cheryl

[doublevision1]

I would echo what the others here have advised re: blood work and further MRI scans.  Specifically your GP should request MRI of brain, cervical and thoracic spine, with/without contrast, as per MS Protocol.  There is a Health Page specifically on this topic for more info.  I would esp emphasize imaging of the thoracic spine due to the sensation around your mid-section, which sounds consistent with MS hug.  However, other symptoms such as the rash and temp regulation problems, do not sound at all like MS.  It certainly could be more than one thing going on, or something entirely different from MS.  

Re: waiting to see a specialist, if it is a longer wait to be seen at a MS clinic, ask your GP to refer you to a general neurologist who has a specific interest in MS; in doing so perhaps you can at least get the ball rolling.  I live in Alberta and was referred by my GP to an on-call neurologist at U of A hospital.  My GP called me back the same day she made the referral, to advise that the on-call neuro would see me within a matter of days, I suspect because among my many symptoms was double vision,  this seemed to really get everyone's attention.  Anyway I saw the on-call neuro on a Thurs morning; Thursday afternoon I had an LP; Friday the results came back, I was given a general dx of demyelinating disease, Friday evening I was started on a 5 day course of IV steroids, and within 5 weeks I had my first apt with a MS specialist at U of A.  I do believe part of the reason I was seen so soon at the MS clinic was that I called them on a regular basis to check in for appt availability, once I knew the referral was made.  I got their voice mail quite a few times, then the first time the receptionist answered the phone and I was able to speak directly with her, she said she could get me in a couple of weeks later.  I believe I would have waited longer if I had not made the call that day myself.  Please don't take long waiting lists as a given.  In my experience you can greatly influence how quickly you are seen, but you need to take control of the process.  There are a couple of recent threads about being your own health advocate.  In them are some great suggestions from forum members, in terms of what worked for them.  Hopefully you will find them to be useful.


It is disappointing that your family is not being supportive, but you are very fortunate to have a husband who is standing by your side in all of this.  Further, if you choose to stick around this forum, you will find you'll get tons of support and very helpful information and resources.

One last suggestion, which was a tip from a friend who is a nurse.  If you are feeling worse and worse and stuck on a waiting list despite your own efforts to get your name bumped ahead, present yourself at your local emerg.  Of course we all know that treating patients in emerg can be the most expensive mode of care, but any further testing or referrals will happen a lot quicker going this route.  They need to get you out of there asap and will do what it takes.  If you get to the point or already at the point of not functioning, seriously consider this option.

Take care.  I hope that you keep us posted on how things turn out.

[sllowe]

Hi Cheryl,

Welcome.  I'm sorry for what you have been going through.  Like Wobbly says, so many mimics will have to be ruled out 1st.  Did your GP run labs on your blood?

Having a hubby who understands is particularly important no matter what you are facing. Waiting on that appt. will feel like forever no doubt.  Hope we can help you while you get through these symptoms.  Though I'm in the states, 3 months to get to a neuro felt like a lifetime to me, especially because I couldn't function.

Hope you get through each day best you can.  Leave those who don't understand out of your world for now if it's possible.

See you around!
-shell
p.s. the health pages will also show the MS typicals where lesions are concerned

[skarey]

I'm sorry to hear you aren't feeling well.  It's super hard when you have small children as well.  I can totally relate to you.  I have two little ones and its hard when you feel so tired all the time.

I'm by no means an expert when it comes to MS, but I too am in limbo (sort of).  Many of your symptoms could be MS related as you already know, but many of your symptoms aren't characteristic of MS such as the joint pain, rash, cold sweats..   Have you been tested for Lupus?  The "butterfly" rash is very prominent in patients with Lupus especially when exposed to sunlight.  Also maybe consider lyme disease.  It is a big MS mimic and can cause all the symptoms you describe.. even brain lesions.   Or it's even possible to have a combination of things going on...  

Anyways I hope you find answers and get to feeling better soon.  You are welcome to post in the lyme forum if you have any questions regarding lyme disease and testing....

Take care.

[Wobbly]

Sorry, your going through so much right now.  I'm not yet Dx and have alot of these symptoms as well.  I've had a MRI of my Full Spine...ask your Dr for a Cspine for full spine MRI... lesions there will tell the Dr alot.  

have you had blood tests to rule out other mimics of MS?  Have you had a LP? VEP test for your vision?

I'm sure the MS specialist will send you for all the tests needed and I too live in Canada and know it takes alot of patience... long wait lists... it has been 4 years of testing for me and not Dx...but I do have meds to helps with some symptoms.  

Check out the "Health Pages" link on the top right side of the page..it will give you alot of information that might help??  

take care and let us know how things go..
wobbly
undx