Nebbie, Not Diagnosed (yet), Scared, Need Advise Please

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Nebbie, Not Diagnosed (yet), Scared, Need Advise Please

Postby HunnyBunny » Mon Mar 14, 2011 10:44 am

Hello All! First of all, I'm sorry if this is going to be a long note. I've been reading up on MS and lurking this forum for many weeks now. I'm not diagnosed with MS, but I've been told by 2 different Dr's that it's a possibility. Things are getting worse for me, and I don't know what to do. I'll start by giving a bit of background of the last couple months:

I'm currently living in Chestermere, AB, Canada, 42 yrs old married Mom of 3 awesome boys. I'm also gluten intolerant, though test for Celiac came back negative because I refuse to eat gluten). Anyway... about 2 mths ago, I had a really bad fall on ice in which I landed flat on my back & head. I watched for signs of concussion, which never came. I was only slightly sore (like mild whiplash) from the top of my neck down my back. It went away after a few days. I've always been very active and in great shape... I exercise regularly: running, weights; I am a personal trainer. However, things suddenly went downhill, it started with tingling in my toes and fingers on my left side only, a very weak lower back and pain in my neck. I stared dropping things... I broke 3 glasses emptying the dishwasher. I then had an episode where my vision suddenly went very dim and blurry, and I though I was going to faint. I sat down (panicking) but it passed after what was probably actually a very short time, and then I started shaking, and was doing that all day. By the time my Dr appt came around (a few days later), the pins and needles in my toes and hands increased, and I had a strange cold numbness in my upper left arm and thigh, and my tongue, lips and face (from my nose to behind my ears) felt numb - like when the freezing is wearing off from the Dentist), and I feel shaky - like muscle fatigue after a good weight workout. I thought I might have a herniated disk (or two). The Dr ordered several blood tests for various deficiencies, ECG, and X-rays of my neck, back and pelvis. By the time of my follow-up, the numbness and tingling had spread to my right side, and I was getting shocks of pain in my lower legs, and neck. Everything came back normal, to my surprise, but my Dr suggested MS, and referred me to an Internal Medicine Physician. He also put in a requisition for an MRI. A week later I was at the Int Med Dr, who also mentioned the possibility of MS (they didn't suggest anything else, and that's when I started checking MS online), but did a requisition a bunch more blood tests anyway (don't know the results yet) as well a req for copy of my MRI. I since had my MRI (they were FAST). But as my next follow up appt with Int Med is next Monday (the earliest they can get me in), I went to my Dr as things are getting worse. He said that my MRI came back normal. I asked him if that meant I did not have MS, and he said "no". The brain scan is not conclusive nor a reliable diagnosis for MS. There is another MRI with contrast that I will have to get, and that I should stick with my Int Med Dr for that. I call my Int Med Dr, but they cannot get me in any earlier. The reason I wanted to get in is because things are getting worse. I've tried to work out, but walking wipes me out... I tried jogging, but barely did 2 mins before my body gave out. I can barely lift 5lbs weights without getting total muscle fatigue, and then I'm out for days. I'm now twitch, and get these creepy crawling skin feelings, and I am so tired! The intensity of the numbness changes as I do more activity, and I have trouble walking. And I always feel so weak. I was told my both Dr's if things get worse to go to Emergency. Well I don't think I can wait, and my husband wants me to go tonight. I guess my only struggle is if I go, what are they going to do? I can't stand this any longer and I don't think I have any choice... but to me emergency should be a matter of life and death... though I feel like the life is being sucked out of me... . The more I read about MS, the more it sounds like that's what it is. I've had a history of visual disturbances and severe migraines since I was young, they got worse in my 20s. Eye Drs have said I have binocular disfunction, while another says my muscles just can't seem to focus, they are working to hard. I wear glasses that help, but usually in the afternoon, they don't, and I get double vision. I've had carpal tunnel syndrome in both my wrists early 20s; diagnosed as I had severe numbness in my fingers. I had the operations and though it's been much better, I always thought that it wasn't 100% as I would still get tingling off and on (never really gave it much thought till now). I've been tested for Asthma because of breathing difficulties... I don't have asthma, but I get a tightness in my chest that seems to stop me from being able to take deep breaths (esp in humidity). I've had several episodes of sharp upper abdominal pains, and had all sorts of test for my gall bladder, stomach, esophagus, liver... everything always comes back normal, and because things go away, I never would pursue it, and have to start from point zero all over again. I even had one Dr tell me that it's my age, and I'm a mom, and maybe I should exercise and change my diet! I was ready to punch him...

I know this is a lot to read. And I really appreciate it. I completely sympathize with anyone who has MS. It really scares me when I read about the stories on this forum, and the frustration of waiting for results or treatment. I wish you all well. I guess I'm just looking for confirmation that at this point going to Emergency is the right thing to do, and to just get my story out there. I just want to know, so I can begin to deal with this before it gets any worse. It's taken me a long time to type this, and now I'm tired. Any help, support is greatly appreciated.

Amanda :wink:
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Postby jimmylegs » Mon Mar 14, 2011 3:43 pm

hi amanda welcome to TIMS. sorry to hear about your trouble and all of us remember the scary uncertainty of early days.

there are lots of different ways to approach ms and i'm sure others will chime in.

my focus is optimize nutrition status first, see what if anything clears up, and proceed to investigate additional treatment options from there. from what you describe i'm getting red flags on magnesium calcium and zinc (and associated problems with uric acid) plus vitamin D3, B-complex, and potentially E.

people with ms have a known array of nutritional imbalances and you can request tests to find out if you match an ms patient profile or a healthy control profile. may i ask what tests you have ordered? you can get a lot done with bloodwork (if nutrition makes sense to you and you have a receptive doctor) even while waiting for the mri.

anyway if you're interested feel free to fire questions my way. keep your chin up - you're doing the right thing by taking control and reading :D
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Postby HunnyBunny » Wed Mar 16, 2011 11:58 am

Thanks so much Jimmylegs!

I actually did go to emerg yesterday, I should be finally getting in with a neurologist by the end of the week (so they told me).

I am very much into nutrition and supplements. That's actually part of my work... all my blood test for vitamin and mineral deficiencies came back fine. Thanks so much for the links.

I do have a couple questions... does anyone know of any other conditions that are similar and MS symptoms? My MRI (brain) came back as "normal", but I had 2 Dr tell me conflicting info, one said it means I don't have MS, the other says it is not a reliable indicator, that MS is still a possibility. I guess that's why the Neurologist is necessary. Has anyone heard of Peripheral Neuropathy? I just can't help but wondering if what I have is more along this line as this is just so progressive, so fast, since it was so close to a major fall on ice? But then again, this almost feels like every issue I had in the past coming on me harder and longer this time around.

Also, does anyone else get really really tired (exhausted - muscle fatigue & pains) just doing regular everyday stuff like laundry, dishes, getting ready for the day? I guess it's good that I'm a SAHM that works p/t, so I can take breaks :), though I hate that I can't work out like I use too.

Thanks again for listening!
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Postby jimmylegs » Wed Mar 16, 2011 1:29 pm

no probs hb.

you probably know that the normal or reference ranges aren't always helpful, for example the deficiencies seen in ms patients are more typically significantly different parts of the normal range. for instance uric acid normal range 140-360. ms patients average 194. healthy controls 290-300.

zinc normal range let's say roughly 10-20 umol/L. ms patients sit in the low teens, healthy controls sit around 18.

also you know how zinc is important for proper urea cycle? when i had deficient zinc (8!) and low uric acid (188-194 depending on the day) i didn't know about the link. i figured it out eventually and started testing them at the same time. when i got my zinc up into the 16 range my uric acid came up at the same time to 278. it was awesome.

similar deals with magnesium, normal range says 0.70-1.10, research says people with levels under 0.90 should supplement. i can feel the difference in my body between magnesium in the .8 range and in the .9 range.

that's just a scratch on the surface.. the list goes on and on. which levels did you get tested if i may ask? i'd be super curious to see the results but only if you're comfortable sharing (here or in a private message).

ttfn!

jimmylegs

ps re the pain and fatigue i'm thinking d3 and magnesium. also possibly for fatigue a quick b-complex megadose could help. i'm going to oversimplify things here, but the klenner protocol for ms recommends basically a b-100 complex with meals and at bed time every day (obviously not forever, but as a short term therapeutic thing). hth!
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Postby euphoniaa » Sat Mar 19, 2011 7:23 am

HunnyBunny wrote: My MRI (brain) came back as "normal", but I had 2 Dr tell me conflicting info, one said it means I don't have MS, the other says it is not a reliable indicator, that MS is still a possibility.

Has anyone heard of Peripheral Neuropathy? I just can't help but wondering if what I have is more along this line as this is just so progressive, so fast, since it was so close to a major fall on ice?


Hi HB, I'm so sorry you're going through this and wish you well! It's all pretty confusing, and it sounds like your docs may be just as confused as you are (common, but yikes!) A MS diagnosis generally comes after lots of testing that rules out the many other medical conditions that mimic it, so I hope your neuro can help you out and at least treat your symptoms.

Since my dx came practically overnight, I don't have too much to say except that yes, you can have MS with no brain lesions that show on MRI, brain lesions can also indicate other diseases, and spinal lesions alone can give a dx of MS. In fact, spinal lesions seem to produce more serious symptoms, while the brain is more 'plastic' and tends to adapt, forming new neural pathways around them.

Also, often MS brain lesions show up in specific areas, often with distinctive shapes. (Lots of lesion info out there...it's easy to search for.)

My main info, tho, is about your peripheral neuropathy question. PN is usually considered a result of some other problem and not a separate disease (except for ones like the hereditary version I have :) ). I'm adding a couple of links and quotes from them. MS is a disease of the Central Nervous System (brain & spinal cord). All the other nerves in the entire body make up the Peripheral Nervous System. Damage to the PN can cause symptoms exactly like the ones listed for MS. Confusing, huh?

Altho your history may suggest MS, PN can also be caused by the type of physical trauma you experienced. Here's some Peripheral Neuropathy info for you, but you DO need a doc's advice and guidance. PN symptom lists sound a lot like MS symptom lists. Good luck finding some relief!

PERIPHERAL NEUROPATHY INFO:
I like Mayo Clinic info, but you have to click on lots of separate pages:
Mayo Clinic PN symptoms

Mayo quotes:

Your nervous system is divided into two broad categories. Your central nervous system consists of your brain and spinal cord. All the other nerves in your body are part of your peripheral nervous system. Peripheral neuropathy affects those nerves, which include:

■Sensory nerves to receive feelings such as heat, pain or touch
■Motor nerves that control how your muscles move
■Autonomic nerves that control such automatic functions as blood pressure, heart rate, digestion and bladder function


Signs and symptoms may include:
■Gradual onset of numbness and tingling in your feet or hands, which may spread upward into your legs and arms
■Burning pain
■Sharp, jabbing or electric-like pain
■Extreme sensitivity to touch, even light touch
■Lack of coordination
■Muscle weakness or paralysis if motor nerves are affected
■Bowel or bladder problems if autonomic nerves are affected


Causes (see link for full info):
■Trauma or pressure on the nerve. Traumas, such as motor vehicle accidents, falls or sports injuries, can sever or damage peripheral nerves. Nerve pressure can result from using a cast or crutches, spending a long time in an unnatural position, or repeating a motion many times — such as typing.
■Diabetes.
■Vitamin deficiencies.
■Alcoholism.
■Infections.
■Autoimmune diseases.
■Other diseases.
■Inherited disorders.
■Tumors.
■Exposure to poisons.


Lots of detailed info here:
Nat Inst of Health PN info

Lots of good MS info on this site:
Good MS info site
Last edited by euphoniaa on Sat Mar 19, 2011 9:22 am, edited 7 times in total.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby euphoniaa » Sat Mar 19, 2011 7:26 am

Geez, I hate it when links make the page too wide to see. Can anyone edit my links or tell me how to do it? I'm not even sure which ones are causing it.

UPDATE: I did it! I fixed my links! In only 7 attempts! :D
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby HunnyBunny » Sun Mar 20, 2011 7:55 pm

Thanks euphoniaa! I've checked out the links, and yes it can be confusing. LOL, they almost sound exactly the same... I've also read that accidents can bring on MS symptoms as well. Our health care system here is awful, and I'm getting very frustrated, and feeling let down, forgotten, not taken seriously and like I'm getting the complete runaround. I have an appt with my Int Med Dr, and hoping they can speed up my Neuro appt. I've been hearing for weeks that I've been referred but no one calls. Emerg Dr's have twice duped me into believing they are helping me, but really ended up doing things like referral to urgent neuro, and bogus MRI requests that keep sending me back to my GP.

Anyway, hoping I can get somewhere tomorrow... Thanks again![/u]
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Postby bobble » Tue Mar 29, 2011 2:56 pm

I posted a fairly lengthy reply, but when I clicked submit it seemed to eat my post. Anyway, here we go again, but the short version.

My Ear-Nose-Throat doctor thinks I have MS. Based on what I have read about it, I think he is right. I have an appointment with the neurologist next week.

Back in November I was in a bicycle accident. Flew over the handlebars and came down on pavement on my left rib cage and left arm. Fractured 4 ribs. I immediately developed some minor symptoms which I did not immediately realize were probably neurological.
- Pains in my left leg and arm that would only last a few moments and go away.
- 3 occasions of irregular heartbeat
- A mild sense that I could my blood pulsating through my veins.

As my ribs heeled (7-8 weeks), I generally felt better and had no more heart palpatations. A few weeks later (a couple months after the accident) I started to develop all of the symptoms you describe. I started with waking in the morning feeling a little nauseous and light headed and chills. Later developed the tingling in left fingers/toes, then left arms and legs and EVERY SINGLE ONE of the symptoms you describe except the skin sensations (other than in my hand and toes) and I don't have migraines. Even the eye and face stuff between the nose and back of my left ear. I even had abdominal symptoms (like Celiac Disease symptoms) like yours last winter (09/10) for which I had a CT but nothing was ever concluded and most of those symptoms went away over the summer. During that time, and up until the day of the accident, I had none of the neurological symptoms I now have. Like you, my doctor said go to ER if symptoms get too bad, which I did on one occassion, but that was before they suspected MS. They did nothing for me except blood tests and I am not sure what they could.
I was wondering if you actually got any relief from going to the ER?
Also, how is your diagnosis progressing?
Even though I am starting to have difficulty standing/walking on my left leg, I feel better standing than sitting or laying down. I think sitting in my desk chair for long periods of time actually makes my symptoms worse.
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Postby bobble » Tue Mar 29, 2011 2:57 pm

Sorry for this dummy post but I fogot to select notification.
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Re:

Postby NHE » Wed Mar 30, 2011 12:45 am

bobble wrote:I posted a fairly lengthy reply, but when I clicked submit it seemed to eat my post. Anyway, here we go again, but the short version.


When this happens, try using the back button in your browser. If an error message is displayed when you try to post your message, then the back button will usually take you back to your original composition.

My Ear-Nose-Throat doctor thinks I have MS. Based on what I have read about it, I think he is right. I have an appointment with the neurologist next week.

Back in November I was in a bicycle accident. Flew over the handlebars and came down on pavement on my left rib cage and left arm. Fractured 4 ribs. I immediately developed some minor symptoms which I did not immediately realize were probably neurological.
- Pains in my left leg and arm that would only last a few moments and go away.
- 3 occasions of irregular heartbeat
- A mild sense that I could my blood pulsating through my veins.

As my ribs heeled (7-8 weeks), I generally felt better and had no more heart palpitations. A few weeks later (a couple months after the accident) I started to develop all of the symptoms you describe. I started with waking in the morning feeling a little nauseous and light headed and chills. Later developed the tingling in left fingers/toes, then left arms and legs and EVERY SINGLE ONE of the symptoms you describe except the skin sensations (other than in my hand and toes) and I don't have migraines. Even the eye and face stuff between the nose and back of my left ear. I even had abdominal symptoms (like Celiac Disease symptoms) like yours last winter (09/10) for which I had a CT but nothing was ever concluded and most of those symptoms went away over the summer. During that time, and up until the day of the accident, I had none of the neurological symptoms I now have. Like you, my doctor said go to ER if symptoms get too bad, which I did on one occasion, but that was before they suspected MS. They did nothing for me except blood tests and I am not sure what they could.
I was wondering if you actually got any relief from going to the ER?
Also, how is your diagnosis progressing?
Even though I am starting to have difficulty standing/walking on my left leg, I feel better standing than sitting or laying down. I think sitting in my desk chair for long periods of time actually makes my symptoms worse.


It sounds like your problems started after your accident. Did you get checked out to make sure that you didn't knock a vertebrae or a disk out of alignment?

Sorry for this dummy post but I forgot to select notification.


You can always go back and edit your post and select this option in the case that you forgot to initially.

NHE
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Postby bobble » Wed Mar 30, 2011 2:24 pm

No - not yet.
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Postby HunnyBunny » Tue Apr 05, 2011 5:44 am

Hey Bobbi,

Sorry for not responding... crazy busy with family life, and dead tired at the end of the day. To let you know, Emergency did NOTHING for me. I'm actually very angry with them, mostly because I believe I got the run around. The 1st time I went the Dr refered me to Urgent Neuro, who said I wasn't urgent and sent me back into the "general" Neuro. The 2nd time I went, the Dr gave me a req for a MRI for my spine, but the clinic her referred me to was a private one, and would've cost me over $2000.

Luckily I still had a follow-up appt with Int Med that was a little more productive. I finally have an appt with a Neurologist in 2 wks. I was given Amitryptoline for the pins & needles, but they told me it could take a month before I feel a difference. So far, it hasn't done anything but make me even more tired. I have a MRI appt for NOVEMBER 25, 2011 (it's really bad out here), but hopefully that might change after the Neuro appt. I'm still waiting to hear about my Nerve Conductivity Test appt.

I find interesting is that your symptoms also came after an accident as well. I'm looking forward to seeing what the Neuro says, and hopefully it will be helpful. I'm getting tired of not being able to do anything. I've always been very active, and I was to do a 1/2 triathlon and a full triathlon this year, and now, I can't. I can barely walk at a 3.0 for 20 mins, and I use to run 8k at 5.5 everyday! I'm considering doing relay for life because at least I can walk that - haven't decided yet though. And, nevermind doing weights. I do 1 set of squats with 5lbs dumbells and I'm shaking with muscle fatigue. I just watched a video of a 92 yr old doing a wicked salsa, so I'm not giving up, but it's slow going. I think the hardest part is not knowing what this is, and not seeing any light (yet) at the end of the tunnel. At least if I know what I'm dealing with...

Well that's another eyeful I've given. I wish you well, and hope for the best.

Amanda
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Postby HunnyBunny » Tue Apr 05, 2011 5:45 am

oops, see, even my eyes are playing tricks on me... I thought you put Bobbi, but now I see it's Bobble... sorry!
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Postby bobble » Tue Apr 05, 2011 8:57 am

Thanks for the update Amanda. I was hoping to hear that you were further along in the diagnosis process. I know from my own experience that waiting is tough. What makes me even more uncomfortable about the waiting is thinking about the possibility that I have something that needs immediate attention and I'm not getting it. I read six threads on this forum and others from people who developed MS symptoms after an accident. Five of the six tested negative for MS (of course there are different kinds of tests and some are not very conclusive, and then sometimes people really had symptoms before their accident but didn't realize it).

I ended up in the ER on the evening of my previous post. They gave me Ativan which seemed to help, although it gave me brain fog for the next day and half. In hindsight, I think half of my symptoms when I went to the ER that night were due to anxiety and not the MS symptoms.

Check out the link below and the wikipedia page on post concussion syndrome.
http://en.allexperts.com/q/Chiropractors-965/2008/8/MS-resulting-car-accident.htm

Best wishes for a positive outcome and I hope you get some relief soon.
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Postby Tinkerbell » Sat Apr 16, 2011 3:14 am

Sorry to hear this HB. I to was diagnosed when I was actually 43 nearing 45 now. I believe that diet is a huge factor as JL has pointed out. Another thing I am checking or trying to check out is emotional or physical trauma and MS. You seem to have had the physical trauma that has onset your MS. I am sure that others may have insight to this and if they do...it would be nice to have their input to it as well. Here is a link that might be of interest to you and others

http://www.youtube.com/watch?v=AXKzXelq ... ded#at=356
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