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1002512 tn?1265438579

What do you guys think?

Hey everyone,

Im rather new here; however throughout the recent months Ive been reading posts on this site regarding MS, so i feel as though Ive been here longer lol.

I just need a neutral opinion, to my question because my family doesnt believe my symptoms except for my boyfriend.

In March of this year I started to have episodes of extreme fatigue/ tiredness- to the point where I wouldnt be able to stand/ sit/ or talk; I would only be able to lay down but not necessarily sleep. I figured it was my period but this didnt stop when i finished my cycle. A few weeks later I began to have prickling sensations in my calves, fingers, arms, back, and a creepy crawly feeling (like bugs) on my face. My left leg knee down had gone numb, Ive had my right fingers go numb, and my left cheek has gone numb. About a week after that I started to have burning sensations in my muscles (calves/ knees/ thighs/ wrists/ face etc... my doctor said it was neuropathic pain). I also had a few instances where I would get an electric shock/ knife pain in my cheek while speaking. I went to my doctor and she ran blood tests for diabetes, B12, anemia, mono, thyroid, and a few otherthings i cant remember. Everything turned out normal, so she sent me for an MRI (this june) w/o contrast which showed up normal. I had an EEG and EVP (both in july) which both turned out normal.

In April while at work my body had started to go numb in different limbs and I then fainted/ passed out because I couldnt stand myself up since i was feeling so tired. I did a stress test, echo heart test and ultrasound and my cardio related tests were all normal.

Finally this July my symptoms vanished, only to have them reappear now a month later in August.

My doctor suspected MS initially, as did I (from reading on the internet), but shes says i dont have it because my MRI and EEG/EVP were clear. I have a neuro appt. this month on the 25th; Im reay excited because when i feel these symptoms i feel as though Im crazy because noone sees what im ACTUALLY feeling.

Im 20 years old, im only 4.6lbs over weight and Im 5'7"... i eat overall pretty healthy and try to excersize 1ce a week if im not completly drained.

Does this sound like MS? I know there are a lot of imitators, but I still feel its a possibility. Also could my tests have been performed too early; and the damage is not yet visible? And wouldnt I have needed an MRI WITH contrast? :S

Please help
bellesunday3 xo
13 Responses
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1002512 tn?1265438579
Other than the one time last year and a few weeks ago-- ive never fainted in my life.

Hopefully they figure out what is going on with you... 2 years is way too long!! Doctors only seem to start "caring" once something bad happens. My neurologist did the same thing; claiming "this and that are causing your symptoms".. "women are complex like cars" :@ Even when I stopped my birthcontrol i had an "event".

Ive had tests for autoimmune and blood disorders also, all of which came back normal. Ive read you can have things like Lupus and have a false negative result as well as a false positive.

Does anyone know what deep horizontal nail ridges mean? I hate feet and only trim and polish mine when its needed; and I always forget to bring it up at the doctors. These ridges started forming when all of my symptoms began last year. Theyre not the typical vertical ones you get that go away..

Thanks so much for the suggestions :)

(My symptoms are starting to slowly dissapear/ have less severity...again... strange)
Helpful - 0
Avatar universal
Oh yeah forgot to mention, IME the MS clinic in Toronto doesn't try and rule in mimics as explanations for symptoms.  They focus on ruling MS out with negative MRI then they discharge you.  I would suggest meeting with your doctor and talking about some of the mimics, and ask her to run the blood work for this herself.  Maybe you can go to a reputable site (like the MS society) and print of some of the more common mimics and ask your doctor to run the blood work.  Some of them have already been checked for, (B12 and Thyroid etc) but there are a lot.
Helpful - 0
Avatar universal
HI please look at some of my previous posts!

I'm in Toronto, and have been assesed at St. Mikes, and would not recomend going there unless you have a clear cut MS diagnosis or your MRI shows lesions.  My Dr. there was not taking me serious (IMO).  He would shrug off numerous clinical signs (irregular reflexes etc) as "normal for me" (yeah that is what he said)  He did prescribe a med for the horrible lightning bolt eye pains. (and it was a tricyclic anti depresant) but I had to go off of it after a few weeks because I became quite ill.

two weeks ago I deveopped fainting spells and heart palpitations (racing heart) ended up in the ER. I called the MS clinic and they told me to go to the ER and fast tracked me in so I only wating a few minutes to be admitted.   I have been having irregulr blood work for several months showing electolyte imbalances. MS doctor just kept trying to explain it away, (ie that I had high cholesterol) and was retesting every week for three weeks until I ended up in the ER.  Er doc got copies of blood work, ran more blood work and found out I'm quite anemic, and have a very high protien level in my blood.  I have now been referred to the St. Mike's inernal medicine group for complex or hard to diagnose cases.  Last week they did a tonne of blood work for autoimmune and blood disorders.  My appointment is this week (for Tornot this is really fast! guess I finally got sick enough that they are now taking me serious) I'm early 30's female. Having been in limbo process for about 2 years now.

If you are having fainting spells I don't think this is an MS symptom.  I would not ignore it!
Helpful - 0
1168718 tn?1464983535
Sorry, I was writing to you on the last one I posted, but anyone else can check it out, it might help others too.  

I hope it helps doublsvision1 too.  


Cheers, Candy158
Helpful - 0
1168718 tn?1464983535
Hi and welcome.  I have been going through very similar things are you seem to be going through as well.  Except I am 51 years old, and just 2 years ago I started having symptons and I have gone through 7 neurologists to no concrete conclusion.  I have 120 lesions on my MRI and a few on my spine, but my EVP  was normal too, though that was 2 yrs. ago.  Then suddenly, just a few weeks ago, the last neurologist I saw, wrote a consult to my GP.  He started by saying that he is pretty certain that I have MS, and any neurologist that looked at my MRI would say the same, but, 2 paragraphs later he stated that I was in the secondary-progressive phase of this disease, and maybe he wants to start me on some drugs like oxycontin.  I'm really not interested in that.  I have had some success with Gabapentin, 1200mgs. per day, and Trazodone at night to help with sleep.  I am also on 50mg of Zoloft, as depression is a big sign in this disease.  ( I think it is because of all the stuff the Dr's put us through.) ....

I am also a Canadian, and live in Victoria BC, and I am waiting for my appt, #8 at the UBC MS clinic in Vancouver.  Hopefully then we can get some concrete answers.

I wish you luck, and I totally agree to go to the Universities Clinics and they apparently have fabulous doctors.

Keep your chin up, and TRY not to let this drive you nuts.     :) Candy
Helpful - 0
1002512 tn?1265438579
Thank you to doublevision1 and Deb61

The anti-depressant is Cipralex... I havent found anything regarding this drug and helping neuro-pain... It works using SSRI's or something like that...

I didnt know I could obtain my own records (good to know)...

I live with my mom but she doesnt take my symptoms seriously-- she figures the fatigue is b/c of laziness, and the pains are b/c i dont take multivitamins (cause constipation- even low iron ones)...

The rest of my family thought it was just a virus.. but I dont share when I'm in pain, or feeling unwell b/c they figure I just want to lounge around all day which-- I hate doing-- I'd rather go shopping, or play pool, or go for a quick swim.

I will have to check out the UofT and St. Michaels program- I didnt know those existed either.

I just want to know what is going on with me- I'd rather get a diagnoses as depressed or anxiety; however I still dont feel I have those as I do not feel anxious nor depressed.

The last time I worked out I triggered what ever this ``thing``, I would warm-up, run for 20-30 minutes and then do some light weights... Yoga I find is too boring as I am too hyper of a person...So I cant even really work out without feeling weak from being too hot. My 13 year old cousin is stronger than I am, which is absurd lol.

Once again thank you for your help

This is why I joined this website in the first place :) :D

Helpful - 0
382218 tn?1341181487
I won't comment on whether anti-depressants are appropriate for you, however just want to point out that in some cases, mine included, these meds are used to treat neuropathic pain, incl. the burning, prickling, shooting sensations you describe.  I have no history of depression, but do find some measure of neuropathic pain relief from amitriptyline, a tricyclic anti-depressant, which is an older class of this type of med.  SNRI's such as duloxetine are also used to treat neuropathic pain.

You mentioned your doctor initially suspected MS but then said you don't have it because your MRI and EVP was clear.  She may be quite right that you don't have MS, however in the early stages of this disease, tests often are normal.  You are exactly right about this.  When my MS symptoms first started, my brain and c-spine MRIs were clear; a year and multiple symptoms later, braine and spine lesions indicative of MS were obvious.  That you continue to have neurological symptoms ought to justify another MRI, of your brain and spine, with and without contrast.  

I notice you live in Brampton and I urge you to ask your GP to refer you to Univ of Toronto MS Clinic or St. Michael's MS program, which I think is justified given her own original suspicions and your ongoing symptoms.  Some of the top MS specialists in Canada practice at these facilities.  She may prefer that you keep the appt she's already made for you in May (I'm assuming it's not at one of these facilities I mentioned) but it never hurts to ask.  

I live in Alberta and I know there are differences from one province to the next in terms of referral processes, etc.  However I have learned as a patient that I can have a huge influence on where I am referred, how soon I get in, my treatment options, etc simply by being informed and asking questions and being politely persistent.  This is not always easy to do but does get easier with practice; I have found that the people I have dealt with in the health care system will go out of their way to help, if you ask nicely but assertively.  You can speed up how fast you are seen by asking to be called if another patient cancels - this happens all the time.  You can call on a weekly basis to see if any appts have opened up.  You get the idea.  You are young and it sounds like you still live at home; your parent(s) may be able to help on this front and advocate on your behalf if necessary.

Also, if you haven't already started doing so, make sure to get copies of ALL of your test results: bloodwork, specialists reports, MRI reports and films, etc.  You are entitled to this by law (via Health Information Act, privacy legislation, etc), though providers are permitted to charge nominal fees if they choose.  I have never been charged for individual results, only when I have needed my entire file copied - which is why it is better to obtain them on an ongoing basis.

Good luck and stay in touch.  I hope things get figured out soon so you know what you are facing and what you can do about it.  In the meantime, you are smart about the lifestyle changes you are making re: diet.  Whatever is going on, eating healthy and taking care of yourself is only going to help your overall well-being.
Helpful - 0
429700 tn?1308007823
If I was in your shoes, I'd probably postpone the anti-depressants until you see if you are indeed depressed or not.  Anti-depressants have side effects--some worse than others.  

I had someone write me a referral for a psychiatrist for me one time, so I know exactly how you feel.  It's more than frustrating.  I felt like someone was telling me that it was making up something or that I was crazy.  I told my neuro about this referral after I was diagnosed with MS (after looking at my brain MRI.  He commented, "I guess it really was in your head all along."
Helpful - 0
1002512 tn?1265438579
Thanks for the quick reply Lulu! :)

I guess another test wont hurt...

I was given a prescription for pain called "tramacet". It made me drowsy and it was only effective for about an hour and a half... It only took the sharpness out of the pains; however I still felt them.

Should I go to another GP for a different opinion before May?
I dont want to offend my doctor as she went to med school, I did not...

I have the feeling that if I request pain meds/ anti fatigue meds, it will make me look more dilusional...

Ive already begun altering my diet- ridding of refined foods.

err- im just frustrated.

My pharmacist recomended that I do NOT take the anti depressants- she sees me on a regular basis (at work) and although she is not a doctor, Im sure she knows how the medicine works...

I am a little bit anti- drug, thus my reason for refusing to take it, but should I take it in the meantime? To see if it works?

Thank you again,
bellesunday3


Helpful - 0
572651 tn?1530999357
You are going through a lot here - these types of symptoms can drive you batty.

Since all these doctors want to point to a psychological root of your problems, may I suggest you be proactive and have a psychological assessment done?  When that verdict comes back *normal* then you can discard future discussions about this beings depression, anxiety or other issues.  This is a common complaint here and getting that diagnosis off the table is very important.

Lyme doesn't have to be predominant to occur -   that's a stupid comment for the doctor to make.

Until you see this next doctor in May, can you request something from your doctor for the neuropathic pain (it takes different meds) and/or for the exhaustion?  


You live in Canada, a hot spot for MS .... we have many members here from CA and they might have advice on how to navigate your medical system.  I'm glad your next appt is with a different neuro, who will hopefully look at your tests a bit closer.

Unfortunately these types of symptoms can be very difficult to diagnose - hang in there and don't give up until you get answers you are satisfied fit your case.

be well,
Lulu

Helpful - 0
1002512 tn?1265438579
Hey I havent really been online because I figured this was all in my head.
I had my brain mri in august and a cervical spine mri this december (both were without contrast and both were clear). When I went to my neurologist appointment; I was not having symptoms, and the neurologist said MS was at the bottom of his list. He did not look at my mri, he performed some physical tests in the exam room (balance, walking) and I was fine. He stated my birth control pills (linessa) were the culprit and that I should stop them. He went on to say that women are complex like sports cars--- yeah. He said I should get a cervical spine mri.

After I finished my cycle I went off the birth control (about the end of september), early november I had another "episode" where I began having fatigue, eye pains, eye sparkles,weakness in one arm, shooting pains etc. My family doctor said she didnt know what it was. After about 4-5 weeks my symptoms magically vanished yet again.

Fast forward to now... it is the end of january- 2 weeks ago I had the flu. When ever my fever would be high; I would get pains shooting up and down both of my legs in my calves, shins and hip bones. On a scale of 1-10 its rated a 15. As soon as I reduced my fever with advil, the pains stopped. This occured almost every day I had the flu. One day while I was sick in bed I woke up feeling numb; I figured I had been sleeping too long so I went to take a shower.
I believe my sensations came back, however I fainted in the shower since i was completly numb. My mom found me and the water was apparently boiling hot.
I went to the doctors the day affter and my doctor prescribed me anti deprssants b/c all of my tests have been normal to date.
She said there is a mind body connection.
I wore a holter monitor for 48hrs and am now wearing an event recorder.
These past 2 weeks since ive had the flu I once again have these wierd symptoms- fatige, leg weakness (left), arm weakness (left), extreme fatigue (even when resting), excruciating eye pains, and my brain seems to be forgetting simple things like where people sit at the dinner table, simple words, keyboard functions at work.)
I do not feel that I am depressed, I do not feel anxious/ OCD.
I am your typical happy go lucky 20 year old.
I want to go out to the movies and the mall; but this fatigue and embarressing random pains whether thier in my butt (literally), or my eyes or finger tips, I jump when I feel these things b/c theyre painful.
I have another neurologist appt. in May with a different doctor.
In the meantime, what am I supposed to do?
How do I politely tell the doctors I dont want drugs, Im not depressed; I just want to feel better?
Ive been missing school because walking to the bus stop is tiring, and my head and arms feel heavy while im in class typing...
My doctor said Lyme "isnt predominent in my city" *eye roll*
Thank you in advance again,
bellesunday3
Helpful - 0
198419 tn?1360242356
Hi there,

Welcome to the MS forum.  You nailed it when you said there are so many mimics. But, I'm also glad to hear that you've had such a thorough work-up.  It does mean the Dr. took you serious - serious enough to run all those tests.

Do you have all of your lab and imaging results to bring w/you on the 25th? That would be my next step.

You know your body best and it's good you are moving fwd w/the neuro.  A good neuro will continue the work-up and do a thorough physical and get your history.  Do tell them as you did us about the burning. It must be strange getting that on the knees and wrists.  Do you know if you were tested for lyme? If not, the neuro should order it.

Thank you joining us and for trusting us with what you have going on.
Hope we can help,
shell
Helpful - 0
1002512 tn?1265438579
I forgot... Ive also had my upper arm muscles contract for 4 days straight, as well as Ive had my left arm shake uncontrollably for 3.5 hours. My MRI was of my brain not spine...

Just trying to be specific..

bellesunday3 xo
Helpful - 0
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