Could this be MS?

[mngirl612]

Hello - I am a 28 year old female living in Minnesota who has been experiencing some odd symptoms for 6 years now. Let me start from the beginning. This will be long so bear with me.... :)

** March - May 2008 **
-Numbness in hands
-Right pointer finger tingling
-Surface of skin feels like it's on fire
-Really cold feeling going up from feet to front of legs
-Difficulty holding a writing utensil
-Body has an internal itch sensation
-Tingling or shock feeling when I tap or hit fingers against something
-Legs and arms feel heavy
-Burning underneath arms
-Upper back entirely numb
-Banging elbow makes pointer finger tingle
-Body movements feel rigid
-When standing, feels and looks like I'm falling.
-Blurred vision, always in left eye
-Feeling of being zapped all over body in random spots

Looking back, I know these sound rather nondescript and a bit widespread...makes me wonder how many of the symptoms were really there and how many were imagined to be there. I never considered myself to have MS until I started to google some of the numbness in my left foot and fingertips that I was truly experiencing. And that's where it all began...

** Saw neurologist in April **
The clinic I visited is one of the largest MS research and treatment clinics in the Midwest, giving me hope I am receiving top notch care and that my doctor is knowledgeable of the topic.

-Spent a long time with doctor. He ordered MRI and EMG for possible carpal tunnel

RESULTS:
EMG was normal. Doctor's letter states, "I explained that the MRI was interpreted as normal, although I do think there is loss of cervical lordosis consistent with some neck spasms. The brain scan does reveal a couple of small areas of white matter change in the right frontal area, which are non-enhancing. I indicated that the changes on the brain scan are completely nonspecific. We can see similar changes in individuals who had migraines. She talks about a lot of muscle spasm and tension in her neck, and I explained this could be an explanation for the numbness that she feels in her hands as well. We are going to send her for some physical therapy. We discussed the notion of doing a spinal tap. Her blood work came back normal. I explained that there is no single test for multiple sclerosis, but that there are protein markers in the spinal fluid, which can sometimes provide a clue. I did indicate that no matter what the results of the testing is, we could recommend her MR of the brain some time in the future just to make sure if things remain stable."

*Did spinal tap

LP RESULTS:
Letter from doctor - "The spinal fluid test came back completely normal. In my opinion, this greatly diminishes the likelihood of demyelinating disease. I suspect that a lot of the numbness and so forth has tied up into muscle spasm, particularly in  your neck and shoulder girdles. You had indicated that you made a physical therapy appointment. At this point, I would not recommend any further neurological testing at this time. However, I would recommend repeating the MRI of the brain, perhaps in 6 months to 12 months just to make sure no further changes are taking place."

**FOLLOW UP MRI RESULTS 6 months later:
CLINICAL DATA: follow up abnormal MRI

COMPARISON:  brain MRI dated 4/28/08

TECHNIQUE: Sagittal FLAIR T1, saggital FLAIR T2, axial DWI, axial FLAIR T2, axial FSE T2, axial and coronal T1 postgadolinium.  15cc of intavenous Omniscan was administered during examination

FINDINGS: The small foci of abnormal T2 signal hyperintensity in the deep white matter of the right frontal lobe are again identified, unchanged in appearance from the exam of April 24, 2008. No new white matter signal abnormalities are demonstrated

There is no abnormal gadolinium enhancement, restricted diffusion or hemorrhage.

Ventricles remain normal in size and shape. Cerebellum and brainstem are normal in appearance. Major vascular structures are patent.

Sinuses and mastoids are clear.

IMPRESSION: Stable, small, nonspecific, foci of T2 signal hyperintensity in the deep right frontal lobe white matter as compared to the exam of April 24, 2008. These likely represent foci of chronic gliosis from remote insult. No new abnormalities are demonstrated.

**Once I received these results, I pretty much went on my merry way and lived life symptom free (no numbness, tingling, NOTHING!) for the next 6 years. I never really even gave MS another thought.


MARCH 21st, 2014.
Here we are today and I'm convinced again I have MS as I've been hit with similar symptoms out of no where. Here are my list of symptoms that I've been keeping track of:

-I had this weird ting on the top of my LEFT foot, between my big toe and first toe. It was really annoying, and mostly noticeable when I put pressure on foot (walking, etc). I really thought nothing of it, it simply drove me crazy. I don't think MS had crossed my mind again at this point.

-Numbness up my side and inside of LEFT arm.

-Upper back felt totally numb and became especially worse in heat (or did it? my mind in overdrive looking for MS at this point). This entire numbness lasted not even an afternoon.

-Inner LEFT arm again numb for week+

-Felt like a band was wrapped around my forearm (lasted an afternoon?)

-Tingle on back of head in same spot. This is so annoying! It comes and goes every couple days, yet only lasts maybe several seconds.

***Symptoms seem to be nearly gone on June 11th (I felt great!), though that night got awful needle like pain in the back of my LEFT eye. I've had this sensation go on pretty much since I was a child. It definitely is painful but never seemed to worry me. It was always infrequent.

-Frst two fingers (pointer, middle) on my RIGHT hand are totally numb around the knuckles, on top. Finger tips don't seem to be numb. This went away for about two hours during the first day, each day afterward it comes and goes but can pretty much be felt to some degree. My RIGHT big toe also started to feel a little tingling at the tip. Numbness in fingers starts to get better, first few toes get worse.  

-One morning I woke up to an odd feeling in big toe. About an hour later I had convinced myself that my entire foot, up to my mid-calf was completely numb. I would always check to see if it was still numb and I would *think* that it was. This probably lasted 10 hours and then it was gone.

-Finger numbness went away for about 5 DAYS. Not a sign of it at all and then bam, I wake up and it's there again..not always in the same severity though.

-For about a week now I've had this terribly annoying sensation on my RIGHT inner knee - it basically is a small patch that is always tingling or vibrating. I try to rub it to go away but of course it doesn't. It is not always constant, though it is frequently there.

-Last night my LEFT inner calf had this very bizarre sensation whenever I put pressure on my foot - only way I could describe it to my fiance was as if there was a tiny spring in there being set off.

-Odd sensations in feet of really hot/really cold.

-That annoying internal itch all over body again

Am I simply going crazy or what is going on? I know I have anxiety over this issue and that some of these symptoms may be imagined or just made worse but there are definitely symptoms I cannot make up.....the numbness in my fingers being the most bothersome and making me the most worried. The strange thing with the all the numbness I've ever experienced, I can still feel sensation. It's never numb to the point of not being able to feel anything. If I lift my arm up over my head or move it around a lot, I can almost make the numbness worse or feel like its tingling. As I type this, the sensation on my inner right knee is still there. UGH!

I have an appt with my neurologist on July 9th. I understand you can have MS without lesions being present on the MRI and without having an abnormal LP.
THANK YOU!!

[mngirl612]

Hi Candy! Love that you're in Minnesota too!

I definitely don't let on to the anxiety I feel over this when at the doctor...no way would I want him to just think I'm loony or not take me seriously. I'll recommend the neuropathy eye exam to him and see what he thinks. As for the issue with my eye, I got a stronger contact and that solved the blurry vision instantly. Just unsure of the occasional pain I do feel in the eye...

[RRlady]

Hi Mn girl- I too am an Mn girl, born in Crosby!  Helloooo!  
It sounds to me that you have too much anxiety about your sx (symptoms).
If you don't take yourself seriously, the knucklehead drs surely won't.  I was dx at 58, and had been having what I call my "Half-assed flare ups" since I was in my 20s. I think you need a neuropathy eye test- that is what clinched the diagnosis for me.  It is a specialized test that is for the optic nerve.  I had all of the same things, tho my lesions were a bit -I'll say greater for lack of a better term (brain fart!).  LP, MRIs, I had all of it,too.  What really matters is YOU- and the damage being done to your nervous system while the dr sits on his laurels,  If you don't get satisfaction and the optic neuritis test, I'd change drs.  Life's too short for all this strife you're going through.  Please keep us posted on your July 7 appointment, and trust yourself- it is truly the key.
Candy

[mngirl612]

Hi JJ - thanks for taking the time to read through my long post and reply!

While I do agree that some of these symptoms are probably being made worse in my mind, I disagree with this being a psychological issue. It is the sensations & symptoms that I am experiencing first that bring on the thoughts of MS (or whatever it could be for that matter!), not the other way around. Nothing made my mind come back to MS, 6 years later, besides the numbness and other sensations that I was dealing with. I am under a severe amount of stress and have been for almost a year - my father very unexpectedly passed away ten months ago, then my grandmother five months ago due to a massive heart attack, and to add to the list.. I am getting married in 2 months. :) The last thing on my mind was Multiple Sclerosis until I started having similar symptoms that I experienced 6 years ago.

Basically I was just looking for input from all of you as to whether these symptoms even sound typical - the way they change frequently, come and go over days, etc. - as well as whether or not it is common or typical to only have sensory symptoms from MS. Also, how likely is it that someone could only have two relapses in 6 years if it really is MS?

IMMISCEO, to answer your question about physical therapy... yes, I did go weekly for about 10 weeks. It's hard to say whether my symptoms were helped by the therapy or whether they just slowly went away with time. I had to stop going because it got to a point where I felt like I wasn't benefiting enough to justify the cost.

Thanks everyone!

[immisceo]

I don't want to speak for Alex (HVAC), but I think she meant it's difficult to get a diagnosis of MS without a *positive* MRI or LP. The fact that you've had both and neither were positive (for typical lesions or unique oligoclonal bands) points away from MS as the likely culprit. Nothing is ironclad in MS world, but your doctor's approach (not diagnosing you with MS) seems to be the appropriate one at this time. Did you do the physical therapy your doctor suggested?

[BonnieK1]

It is beyond frustrating,  I know, to have so much going on and get no answers, let alone treatment. First, hang in there. Persistence and patience, etc. It took decades, every type of doctor I knew, and 'it's all in your head' attitudes from many, before the definitive cluster of symptoms led to diagnosis', plural, in my case. Keep supportive people around you and, as my caregiver reminds me, "Never give up."

[supermum_ms]

Hi and welcome to our little MS community,

I'm not sure if these statements..........

"Looking back, I know these sound rather nondescript and a bit widespread...makes me wonder how many of the symptoms were really there and how many were imagined to be there. I never considered myself to have MS until I started to google some of the numbness in my left foot and fingertips that I was truly experiencing. And that's where it all began..."

"**Once I received these results, I pretty much went on my merry way and lived life symptom free (no numbness, tingling, NOTHING!) for the next 6 years. I never really even gave MS another thought. "

"Here we are today and I'm convinced again I have MS as I've been hit with similar symptoms out of no where. Here are my list of symptoms that I've been keeping track of: "

"One morning I woke up to an odd feeling in big toe. About an hour later I had convinced myself that my entire foot, up to my mid-calf was completely numb. I would always check to see if it was still numb and I would *think* that it was."

"I know I have anxiety over this issue and that some of these symptoms may be imagined or just made worse but there are definitely symptoms I cannot make up.....the numbness in my fingers being the most bothersome and making me the most worried."

..........could be an indication of what maybe happening but I would generally see these types of statements, as being potential clues in the grand scheme of things. To me, you seem to be saying that you are very aware that you could be 'imagining' sx's, and when you get focused on MS, start googling etc you predominantly experience more sensory issues and get more concerned but when you are not 'thinking' about MS, keeping records etc, you don't actually experience any of these issues at all.

I would suggest you consider the possibility that you 'maybe' experiencing a minor physical issue to begin with but psychologically, you can become increasingly anxious that there is something more significantly wrong, and as your anxiety level escalates so do the sx's. If it continues only until you have received enough reassurance that your fine, then it's 'possible' that what you experience is not signs of a physical issue but signs of a psychological issue.

If you do think there is the possibility, then please be brave and speak to someone about all that's going on........

Hugs........JJ

    

[mngirl612]

Hi Alex - I am a bit confused...you said it's hard to get a diagnosis without an MRI or LP, yet I've had both. Are you sure you're responding to the right post because I stated the results of both of my tests...

Thanks :)

[HVAC]

It is really hard to get a diagnosis with out a MRI or LP. You have a lot of things that could be MS or other illlnesses or Neurological disorders. Sometimes is take years being followed by a Neurologist to be diagnosed with MS. I had the positive MRIs and other tests but it took an off the charts LP to get diagnosed with MS. Even with that they had to rule out a bunch of other diseases for the LP. It took two years.

Alex

[mngirl612]

Hi again :)

I suppose I should clarify that in my first list of symptoms, I stated blurred vision always in the left eye - I went to the ophthalmologist at that time and it turned out to be nothing, my eyesight had simply changed in that eye.