Hello!

[artfan]

Hello everyone. I'm a new member with MS World. I have discovered this site while doing some research on MS. I am a 45 year old female, wife and mother of two teenagers. Earlier this year, I was diagnosed with Cervical Dystonia (a fairly rare condition that causes head tremors). At present, the cause is unknown and am undergoing treatments which are, so far, unsuccessful.

During the last 15 years, I have been living many of the MS symptoms, and complaining about them to my GP, without ever linking them to MS. However, in recent months, my symptoms have been getting worse and some new ones have appeared since I the head tremors started last September.

My symptoms include: extreme fatigue that worsens in late afternoon and improves in evening, sensitivity to light, major cognitive issues, memory problems, sexual difficulties, bladder dysfunction, core body temperature problems (different from hot flashes), loss of balance/coordination, drop things a lot, often walk into walls, shock sensations in neck and hand (on several occasions), muscle spasms (Charley horse), vision difficulties and more.

Now does it sound like MS to you??

Since then, I have been doing much research trying to connect the dots and putting my family's medical history together. With the help of my former GP (now retired), I have been tested for all sorts of things in order to eliminate any or all possible mimics. My new GP is not very quick in helping me get to the bottom of this (I don't think he believes it could be MS). And to think I have three cousins with confirmed MS dx. As for me, everything seems to point to MS.

My MRI from last November shows a lesion and some white matter hyper-intensities, apparently inconclusive. Earlier this month, I had a LP done and am now awaiting results. If the results are positive, I will be referred to a MS clinic. If negative, I don't know what I will do.

Either way, I am currently in limbo until the LP results come in. What should I do if my LP results come back normal?? I'm really tired of this waiting game. Please forgive me, I realize many of you have waited many years for your diagnosis. However, getting hit once with one condition (dystonia) and then learning I may a second condition is just a lot to take in. I've been on sick leave for a year now and would really like some answers. Your comments and suggestions are very welcome. Thank you!

Prayers and positive thoughts to all of you.

Artfan

[Nicoly3467]

Hi Artfan,

I am sorry to hear about the array of symptoms you have been having and the frustration to wait and see what this diagnosis is. There is nothing more exhausting than this.

Many of those symptoms sound like MS but again, getting it confirmed from your LP results is best. It's interesting because your MRI shows a lesion and other white matter intensities. I was told by my GP that sometimes people can have demyelination or scarring caused by severe migraine headaches. In my case, it was MS, confirmed after the spinal tap. They found myelin proteins in the fluid.

I am glad you got the spinal tap done to hopefully give you some better answers soon.

Keep us posted and please take care!

[Poppy7402]

If your LP comes back negative and you haven't already, you may like to look into Celiac disease and it's associated neurological manifestation - gluten ataxia.

A friend of mine has many symptoms similar to MS and the cervical dystonia but is Celiac with gluten ataxia.

She recently had botox injections for the dystonia and so far has received quite a bit of relief from these.

Best wishes

Poppy

[aspen]

Welcome from someone else in limbo. I'm sorry you are going through this uncertainty.

If you aren't already, I highly recommend seeing a counselor. I never in a million years thought I would ever need the support, but the continual ups and downs of "maybe ms", "not ms", mimics, "maybe ms" -- well, as you know it takes its toll.

I hope the LP assists you in getting a diagnosis. My neuro has not done one -- he feels no matter what the result, it wouldn't be diagnostic. I have one oval lesion, plus three smaller ones, plus a few more "tiny". I have had four or five relapses of whatever.

I also have the core body temp thing, as well as my right side going cold. I've been worked up for thyroid, cardiac, etc. with still no explanation. Also fatigue, cog fog, right side weakness, pyramidal signs -- the last relapse involved both legs, bladder etc. Just starting to feel (sort of) good again and back to physio.

I also have recently been blindsided with another diagnosis (found while investigating ms). After the initial shock, I still find the ms uncertainty harder to deal with than the new dx.

You get very tired emotionally, never mind the fatigue. I understand completely. Prayers right back at you .

BTW, if you don't mind me asking; are you in Canada? I ask because of your reference to an ms clinic which I don't think is common in the U.S. but is elsewhere.

Be well despite the crazy .

[artfan]

Hello!

Hi again. Yes, I am from Ontario, Canada. Yes, we have MS Clinics in several large cities in Ontario and across Canada. Apparently, they are very efficient in diagnosing and/or eliminating the possibility of having MS. Just so you know, I had to push and insist on getting the LP.

BTW, what is a "pyramidal sign"?

Also, I've had the facial numbness many years ago as well as being extremely emotional. Ever since junior high, I start crying a river as soon as I start laughing, even for the littlest thing...sometimes I have a difficult time stopping (from laughing or crying).

When I watch TV, whether it be a commercial or a show, I cry (or hold myself back real hard) at the smallest gestures (ie. the look of love on someone's face, a reunion of two people who've been apart a while, someone winning a prize, etc.)

Is this what they call the Pseudo-Bulgar thing??

Most recently, I have caught myself saying things that are completely out of character, and inappropriate, for me such as yelling and swearing at a complete stranger (although, he did start flippin' out on me because of my 'no-no' head tremors). This really freaked me out. Now, I'm afraid of speaking out of fear I may say something I will regret.

I'm trying really hard to hang in there but it's getting hard. I believe depression has really started to settle in. I try to get out of the house when I can but it's hard when you have nowhere to go and are not aloud to drive on the highways! My travels are very limited! I have very little human contact with people other that my mother and my immediate family.

I will do my best to remain positive. Thank you for "listening" and for your responses.

[aspen]

Pyramidal signs are weakness, hyperreflexia and a babinski reflex in the neuro exam. I think there are some other things but that's what I remember.

Artfan, I have an email address in my profile, if you are interested in comparing experiences (I'm in Ontario as well).

I don't know anything about pseudo-bulbar symptoms but you can search the site to find threads that will be helpful. There is also a long thread called "Calling All Canadians" in the Worldwide MS Forum -- it's a sticky at the top of the forum.

Depression can stand on its own, but is also associated with many disorders including ms. Hopefully your gp will refer you for help. I had a psych referral in January of this year and he ended up being a huge advocate for my situation. OR, as I said, perhaps a counselor.

Not sure if you are in one of the areas of Ontario with Family Health Teams, but if so, counseling is available covered by OHIP.

Keep us posted, okay artfan?

[artfan]

Results

Hi there,

Got the results of my LP today. Everything was negative. Going ahead with MRI but GP not interested in sending me to MS Clinic for further testing. Seems to think it's all in my head. Believes I am creating all of my symptoms. Can you believe that??

He's been in office since February (May officially) so does not know me from a whole in the ground. I have been having ALL of my symptoms, with the exception of speech/communication and deteriorating memory problems, and been complaining to my prior GP (now retired) about them for well over 15 years...and he thinks I'm making it up since I was diagnosed with dystonia in Feb 2014??? He told me, more or less, that it's all in my head!!!!

The MRI had better have something more significant to prove to him that I am not some lunatic! Last November's brain MRI showed I had “lesion seen in right parietal lobe…three FLAIR hyperintensities noted within the white matter of the right frontal lobes”. The spine MRI showed nothing. They should have done one with contrast as well but didn't even though they knew it was to rule out MS.

Please understand, I am not in the habit of making things up...I am an honest person with integrity who just wants answers!

However, what am I supposed to do if he won't send me to this clinic or refer me to an MS neurologist? He insists I go back to see my last (cognitive) neuro who didn't even listen to my husband and I, and refused to answer any of our questions.

I am angry, frustrated, hurt and now very depressed. Feels like I am stuck between a rock and hard place with no place to go but down. I have good instincts and they are telling, no, screaming MS at me.

Can anyone help? I really don't know what to do. I just feel like crying all the time now...and alone. Please help!

[Nicoly3467]

Hi Artfan,

Sorry to hear your GP is not being helpful at all. It is a terrible feeling to go through and I can relate. I hope you get a clearer idea of what these symptoms might be. Is there anyway you could see another GP or doctor? I know insurance can be hard sometimes switching doctors.

I had problems with my first Neurologist because he would hardly spend any time answering my questions or concerns. I said to myself, I don't need to stay with this guy and feel miserable after each visit. Then after several months, I switched to another Neuro doc who suited my needs better and now, I am much more happy to go to my doctor visits.

[aspen]

So so sorry.

When will you be able to have your mris done?

Has your gp done any work ruling out mimics? Since he went as far as arranging for an lp, I'm assuming that he he worked you up for the many mimics out there.

I think I'd ask your gp for a psych referral. It sounds like that may be a referral he would be happy about . In my case, my psychiatrist ruled out mental health issues other than "situationally appropriate" anxiety (mostly surrounding my relationship with my doctor) and "suggested" strongly in his report I had undiagnosed organic disease.

This also made ER visits much less stressful as I was able to refer to his report (oddly enough, since then I've never had an ER doc or specialist question my mental health).

I found, prior to seeing the psychiatrist, that I actually came to terms with the possibility of a mental health dx. Truthfully, some pills and regular meetings with a kind psychiatrist seemed like a better option to me than an undxed neuro degenerative disease.

Prayers for your journey, artfan

[artfan]

Hi again!

Response to Aspen and Nicoly3467

Thank you for your comments...

I don’t have the date for my MRI yet but it will be soon, I hope. As for the mimics, I was never officially told “you don’t have” this or that. However, every single test I have had all came back negative or good (certain metals, B12, D, etc.), with the exception of last November’s (2013) brain mri which showed a lesion and some hyperintensities and a recommendation for the mri to be repeated in a year’s time.

Oh yeah, I can also say that I do not have the “Anti-Phospholipid Syndrome” aka Hughes Syndrome.

What is an “organic disease”?

Here in Ontario, Canada, there is a really big shortage of doctors so we don’t have the luxury of switching doctors when we feel the need. It’s especially difficult when we want to see a specialist/neurologist, a referral is mandatory and these are really hard to get without a GP.

Also, it’s really hard to get the help you need when your doctor doesn’t believe in you and thinks your illness is “all in your head”. Feeling as he does, my doc is not interested in sending me to the MS clinic since my LP came back negative. Have you ever felt (the "all in your head" bit) this from your doctor?

Do you think talking to a counselor would be helpful or recommended? I feel very discouraged at this point.

Thank you for "listening". Good luck, take care and God bless. -- Artfan

[aspen]

I absolutely felt that from my family doctor. Hence his willingness to send me to a psychiatrist lol.

Organic = real disease process vs. mental health caused symptoms.

[artfan]

Hi there!

Been a while...Here's an update...I had an MRI in October 2014 and had to argue with my gp to get the test done with and without the contrasting agent. He finally did it. However, no spinal MRI. When I went for the test, the machine was down so couldn't do the regular test but did do the one WITH contrasting agent. I believe that one was ok. However, the report stated the lesion is probably still there. The gp refuses to send me back to have the regular (without contrast) MRI done...says I can wait till November 2015! That's a year away!!! Also, I was informed that I was tested for ALL the MS mimics and ALL were negative. However, they (doctors) still insist it is NOT MS!? Ok...then what is it? Although a neuro did declare me to beclinically depressed...I didn't agree at the time (denial?) but now I'm starting to wonder...

He (gp) didn't want to send me to another neuro but I pushed and pushed and finally agreed to do so on Jan 13, 2015. However, the letter of referral was not sent until March 18, 2015!! Now waiting for the (MS) neuro to call for appointment. Getting antsy!

My memory, balance and coordination problems seem to be worsening! I am walking into and falling against the walls more frequently. Have also developed some problems with my body temperature. I get really hot from head to toe for hours and then switch suddenly to chills for a little while then back to hot. It's really different from the menopausal hot flashes. I've been having this for a while (a week or so) and then stopped for a few weeks and now starting again.

Also, over the last several weeks, I've been having a lot of difficulty with nausea. For two weeks, I had very heavy nausea (no vomiting) and some severe neck pain, then it went away. A month later, it came back and still ongoing (it's been a week now) but without the neck pain.

Have any of you gone through this? Is this an MS symptom or something else?

Also, have any of you experienced problems with depth of field? What I mean is, have you had problems judging distances? I have many times spilled my beverages on me because I didn't bring my cup or glass close enough to my lips to drink from it, when I thought it was. (Of course, I felt like a total idiot every time!) At other times, it's a step I take too hard thinking it was lower or deeper than it actually was. That happened a few times on the sidewalk and in the stairs...very jarring and painful in the back and legs. Weird...and scary!

In any case, I am so hoping the neuro will be able to help me and believe in me. Wish me luck!

BTW...There is nothing more they can do for my head tremors. The botulinum toxin treatments for my cervical dystonia were ineffective.

Thank you for your constant support! Have a great Easter weekend! xo

Artfan

[Perennialz]

Hi there!

Been a while...Here's an update...I had an MRI in October 2014 and had to argue with my gp to get the test done with and without the contrasting agent. He finally did it. However, no spinal MRI. When I went for the test, the machine was down so couldn't do the regular test but did do the one WITH contrasting agent. I believe that one was ok. However, the report stated the lesion is probably still there. The gp refuses to send me back to have the regular (without contrast) MRI done...says I can wait till November 2015! That's a year away!!! Also, I was informed that I was tested for ALL the MS mimics and ALL were negative. However, they (doctors) still insist it is NOT MS!? Ok...then what is it? Although a neuro did declare me to beclinically depressed...I didn't agree at the time (denial?) but now I'm starting to wonder...

He (gp) didn't want to send me to another neuro but I pushed and pushed and finally agreed to do so on Jan 13, 2015. However, the letter of referral was not sent until March 18, 2015!! Now waiting for the (MS) neuro to call for appointment. Getting antsy!

My memory, balance and coordination problems seem to be worsening! I am walking into and falling against the walls more frequently. Have also developed some problems with my body temperature. I get really hot from head to toe for hours and then switch suddenly to chills for a little while then back to hot. It's really different from the menopausal hot flashes. I've been having this for a while (a week or so) and then stopped for a few weeks and now starting again.

Also, over the last several weeks, I've been having a lot of difficulty with nausea. For two weeks, I had very heavy nausea (no vomiting) and some severe neck pain, then it went away. A month later, it came back and still ongoing (it's been a week now) but without the neck pain.

Have any of you gone through this? Is this an MS symptom or something else?

Also, have any of you experienced problems with depth of field? What I mean is, have you had problems judging distances? I have many times spilled my beverages on me because I didn't bring my cup or glass close enough to my lips to drink from it, when I thought it was. (Of course, I felt like a total idiot every time!) At other times, it's a step I take too hard thinking it was lower or deeper than it actually was. That happened a few times on the sidewalk and in the stairs...very jarring and painful in the back and legs. Weird...and scary!

In any case, I am so hoping the neuro will be able to help me and believe in me. Wish me luck!

BTW...There is nothing more they can do for my head tremors. The botulinum toxin treatments for my cervical dystonia were ineffective.

Thank you for your constant support! Have a great Easter weekend! xo

Artfan

Hi Artfan, and Happy Easter to you too !

I had depth problems post ON, I also made a fool of myself in a drive-thru as a result of it....(thanks brain xD ) I had neck pain twice since Dec., felt like someone punched me on the left side of my throat and it subsides in < 24 hrs. or so. One of a handful of regular symptoms that comes and goes in that timeframe.
I get nausea when I get dizzy for a long period of time too.

[Temagami]

I had acupuncture done last summer to address the body temperature swings and it did wonders. Can you find an acupuncturist who is willing to read the research on body temperature regulation? ONE visit made an enormous difference for me.