Still trying to get diagnosis of MS type symptoms

[newbrunswick]

I have been experiencing multiple symptoms with no clear diagnosis.  I have chronic dizzyness that has been cleared of ear problems via ENG - ear specialist states this is Neuro not ears.  First MRI showed white matter, but neurologist has not specified what diagnosis is.  My left leg is loosing mobility, and foot drops causing tripping.  Walk is with drunken stuppor gait.  The reflex of right leg is normal, but left leg hardly moves when tested. I drop things with my hands - something as simple as a clothes pin is difficult to operate.  Cognative function is getting worse - stuttering, slurring words, unable to say simple sentences.  When I did the ENG, she asked "name a girl starting with A" "starting with B" etc, and I had difficulty finding names or places - even though I know people starting with those letters.  Simple things are now difficult - remembering or figuring out things are almost impossible.  New tasks - forget it.  I'm frustrated, scared and don't know what else to do.  I am schedueled for another MRI next week.  Don't know what else to turn or do.  Any suggestions?

[Annie62]

Newbrunswick,

What do you mean, say "yes/no" regarding going to the ER.  Do you mean you got the feeling that the ER nurse thought you shouldn't have been brought to the ER for passing out/fainting?  If she implied that then I don't think she had very good judgment, as one can faint from a whole lot of different causes, some more serious than others, and she wasn't in a position to know what the cause of your fainting/confusion was.  A person doesn't have to break their leg in order to be admitted to the ER--lots of other things warrant a visit there.

[newbrunswick]

Ok, on Thursday (Jan 18) - I passed out at work.  I first I thought I just fell - but I was going to go to the truck and leave work - I haven't driven for at least 18 months due to my problems, and the truck was not at work.  I turned my self around and went to the manager - they sent me to emerg by ambulance as they knew I was not "with it".  The admitting triage nurse said to me "what do you want us to do?" .  I was confused and told her "tell me I'm not dying" and she said why are you here.  I told her because I fell down.  She said "well, we are emergency - if you broke you leg because you fell down - we could help you".  I just didn't know how to respond to her.  I was seen by the er doc, who has contacted my neuro who has scheduled an "emergency" visit of Feb 6 (3 weeks).  I am just wanting your opinion - was going to emerg by ambulance in my case something you would say "yes - no".....

[newbrunswick]

Ok, went for the MRI this morning.  They had to "re-set" it part way thru so not sure why this happened.  Anyways, I will be seeing my Nurse Practioner on Friday as this MRI was ordered by the Emergency room physician and was not sure "who" follows up on these tests.

I will be asking her to ensure blood tests for B12, Kennedy's, Huntingtons have been/are done if not done previously.  I am just trying to get my list together so that I know what to ask her.  What other suggestions would you have?  My most troublesome symptoms are "speech" "dropped foot" and "dizzyspells".  There are others, but these symptoms are what will cause me to leave work and go onto disability.  I just want to get better.

Oh, and why oh why do people say "oh, you have just exactly the same thing I have - your're not sick".....ARGH!

[pickle06]

Hi there -
Id like to get the name of the NS MS Specialist as Im moving there and scared to death of losing the superior treatment Ive been receiving in BC the last few years - with a GREAT amount of persistance, and ruffling some feathers to get what I wanted and needed. Pls email me at ***@**** if you can. Thanks!!

I also have received much help filling out forms for CPP disability and venting frustration from the MS Advocacy group BUT they would have nothing to do with me until I was confirmed having MS by one of their neuros which took 6 months.

Im on LTD so now my main job each day is to
1. feel the best I can by doing whatever I can (or cant do)
2. find out what works for my body
3. get plenty of sleep
4. eat right and excercise
5. keep a positive attitude (kind of hard in times of deep sadness)
6. and persist with every ounce of energy in my body with what I think is the right thing to do
7. Try not to fight with my husband (who is VERY supportive) but gets frustrated with me and has his own health and work issues to deal with. Fighting = Stress = Depression = Very Bad days
8. Not get screwed over by my Insurance Company that doesnt want to pay me so they can save a few bucks although CPP approved my claim within 2 weeks of receiving my info.

I jee, I think I needed to vent a bit there.....I feel better already :)

Thanks for listening everyone!

[lat67]

Hi NB,

I to live in NB...Fredericton.  I have seen the neuro here but also went to the Halifax MS clinic.  I saw one of the best MS specialists in Canada there.  I do not have MS but wanted to get it ruled out.  I have been dx with lyme disease and am getting treatment.  The best doctor I saw was at the Halifax clinic.  Email me if you want more details.

***@****

Good luck,

Lesley

[4t1074]

YOu are doing the right thing, don't wait on the Neuros!  I've learned that lesson....

Good Luck

[newbrunswick]

Thank you for the kind words and support.  I have changed my tact on dealing with the medical people here.  Instead of "waiting" for them to let me know what to do, I am being more assertive.  I have given permission for my partner to "raise a little *ell" as she has been biting her tongue for too long.  I feel too sick myself to do this, but she is relieved - I've always been one of those that doesn't like to ruffle feathers, but because I've been doing it "their" way, my health has deteriourated to the point that I'm going to need to go on disability.  I work in a call centre dealing with people over the phone - they have no symphathy for someone who stutters and stammers and can't spit the word out.  I can't help but feel if I had a diagnosis already, I'd be getting treatment and not deteriorating.  I'm frustrated because the Neuro I saw didn't seem to really be paying attention and was yawning.  I was having a good day physically that day, so he wasn't able to see the symptoms I have.  So, when I go back to my NP, I am requesting a second opinion from another neuro.  I was originally going to wait and see what he says, but with my new way of approaching health, lets hope this works.  Again, thanks for your assistance.

Clare

[pickle06]

NB -
Classic - MS Symptoms but Im not a dr. (although I read enough medical articles I could be!)

Hlfx should have a good MS Clinic (a friend of mine with MS goes there - Good Drs
(Im originally from NS - moved to BC in '97 - diagnosed with MS in 2002 moving back to NS '08 to be closer to family and my bad health)

I can relate to your frustration and remember having all symptoms at one time or another. AN MRI diagnosed me although the spinal tap came back neg for MS. I insisted B12 testing as the deficinecy runs in my family. B12 was fine.

I saw Dr after Dr - insisted on tests and more test, basically was a HUGE pest in order to get a confirmed dignosis so I could get on with life and get on appropriate meds. I wish we had a Mayo Clinic in Canada!!

Best of Luck NB. Let us know your outcome. ~pickle~

[Saidee]

Tingling,prickling,numbing,tickling sensations go here ASAP....

http://www.anxietyzone.com/index.php?topic=1070.0

[4t1074]

Yes, you should request to get bloodwork, specifically on the B-12 as suggested, also, Kennedy's usually presents with an increased CK (muscle enzyme) level.  Also MG shows an increased enzyme level.  MG usuually presents w/o muscle wasting and the fact you don't have muscle wasting is a GREAT thing, usu. means autoimmune, which is treatable.  Go to Weikepedia (Google it) and it  will tell you how to diag (or get a better picture) these conditions by looking at the bloodwork

You should request copies of all your med records after a doctor visint.  Educate yourself on blookwork levels and do your own homework.  Don't way for a doctor to do it for you, be persistent!

Good Luck!

[MBKB1]

nb, FYI:

http://www.medhelp.org/forums/neuro/archive/7863.html

[newbrunswick]

As far as the B12 deficiency - I will also suggest that if not already done.  Thanks for that possibility.

[MBKB1]

NB, Before you do anything else, please have yourself checked for B12 deficiency if you haven't already. Your symptoms are classic! Unfortunately, many doctors don't acknowledge this as a possibility in non senior adults, but it definitely is. B12 deficiency can lead to many neurological/psychological troubling symptoms. Including gait issues, dizziness, numbness, and memory loss. And that's the "short list."

I hope you are able to get an answer soon.

MB

[newbrunswick]

Thank you for your response.  I live in Canada - so going to the clinics in the US is not possible right now.  I will consider if I am not able to get an accurate diagnosis here.  I am considering going to another province with Canada as they have a better system - the doctors in my province are not known for their accurate diagnosis.

I have had numerous blood tests - however, I am not sure of the tests for genetic links.  I have an appointment next week with my nurse practioner (I do not have a doctor other then my neuro and ear specialist).  I will bring this up for her to ensure has been done.

Looking at the links you suggested, Kennedy is possible - I have difficulty swallowing - I have choked numerous times on liquid (never on food) - Lots of saliva and drooling that I can't control.  However, my limbs are not wasting or getting smaller.  Just mobility difficulties of walking due to foot drop.  My typing skills have dimished - my typing speed accurate was 92 wpm - now I'm lucky to type a paragraph without mistakes.  So, my motor skills of the hands are getting diminished.  Good to see that there is a genetic test for this to rule out or diagnose. Mystenthia Gravis appears not to be what I am experiencing due to no muscle wasting.  I may be incorrect, but I feel confident to rule that one out.  The ALS I also feel is not likely.  

It's been suggested that Huntingtons might also be a possibility.  I am having sever mood swings that are not typical for me.  Violent anger, no patience, irritability are all new symptoms for me.  I am beginning to see that I am having difficulty with this - this is not a case of EVERYONE else having a problem...so, I'm not sure if this is just stress related to an unknown illness or a symptom of a disease.

Does anyone have any suggestions on great medical facilities in Canada?  I've heard so many great things of the Mayo clinic or MDA clinic - but due to finances I doubt I'd be able to go there.  So, any suggestions would be appreciated.  Thanks!

Clare

[4t1074]

You should shcedule you an appt. at an MDA Clinic, where the Neruos are the best.  Something like the Mayo or Cleveland clinic or you should have one within a few hours drive if your in the US.  Foot Drop and memory problems could be related to Kennedy's, Mystenthia Gravis, MS or ALS and a host of other things, so you should see an expert in the muscular field.  Decreased reflexes are usually point away from ALS, which is good. You need to check your blood, as it could easily be an immune problem, which is the most common.

Good Luck.

[newbrunswick]

Oh, I should have stated - I'm a 43 year old female - no other medical problems other then hearing loss (nerve damage) from birth.  Thanks!