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Old 11-21-2012, 02:01 PM   #1
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Still in Limbo - Just another Update

Hi guys!
I realized that I haven't posted in a LONG while. I'll try to keep it short

The Physiatrist that I was seeing passed away in August. No one called to tell me, and I am still waiting for the EMG/NCV.
He hadn't dictated his notes, but did send a referral to a Neuro. (Not the MS specialist he had told me about)

I saw the Neuro in the begining of October, and he said that we would basically start from scratch. He did a very basic exam (strength and reflexes only) then sent me for MORE bloodwork, and sent a referral to Toronto General. Again, not an MS specialist, but she is the Director of Neurology, and apparently "The EMG Queen". (Still waiting to hear about when that appt is.)

For the past few weeks, I have been fighting fatigue, and had a very tight feeling in my chest and back. It stays very tight, and 5-6 times has developed into this crushing feeling. Like someone punched me in the chest and back simultaneously , then hugged me too hard in apology! Then, on Monday of this week, I woke up feeling very weak. I climbed out of bed and did my best impression of a sack of potatoes hitting the ground, again.

My left arm and leg felt like concrete and I felt like I couldn't breathe, so off to the ER I went. The doc did a rapid neuro checklist, and MORE blood work and an EKG, said flat out "I have no f'n clue what to do"
On my way out, I heard her talking to the nurse and said "that looked like MS", and the nurse agreed.

I got a very sudden call from my Neuro yesterday, stating that they had a call from the ER about my visit, and he wants me to come in next week. My left arm and leg are still very heavy and weak, and my left foot is dragging a little.

I wonder if he now want's more tests ordered?

 
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Old 11-21-2012, 02:30 PM   #2
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Re: Still in Limbo - Just another Update

Thanks for your update. It sounds like your ER visit might have precipitated some beneficial progress. The tightness/crushing feeling sounds like the infamous MS Hug. I generally "crash" as the autumn season ends and winter begins. For me this is an unavoidable trigger, but since it is "expected", my only surprise is when it does not show up.

Sometimes it is better to start things from scratch, but I do think your ER visit is going to make things happen.
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Old 11-22-2012, 10:04 PM   #3
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Re: Still in Limbo - Just another Update

BLess your heart! So sorry you had such a scary experience but it sounds like the ER definitely took you serious and prompted the response from your neuro. Sound like a "blessing in disguise"

 
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Old 11-23-2012, 04:27 AM   #4
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Re: Still in Limbo - Just another Update

Gunnersmama,
Thanks for the update. Please let us know how the appt goes....our thoughts are with you.
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Old 12-09-2012, 01:48 PM   #5
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Re: Still in Limbo - Just another Update

Sorry I haven't updated on my Neuro appt from Nov 27th. To sum it up, it was very uneventful. He did an exam and stated that my left side is still weaker and hyper-reflexive, and said that all we can do is wait for the EMG appt. A little disappointing to say the least.

I was back at my family doc on the 29th for a ANOTHER UTI and because I had some pretty bad tremor that were even waking me up at night, and verbalized my frustration to him about my case. It's not that I want to have MS, or anything else, but there is obviously something going on, and my opinion is that MS is what clinically fits right now. He did agree, and said to be patient. He thinks I will be in good hands with the doc that will be doing the EMG.

This past Friday, I was walking out of the grocery store when "sciatica" hit, and I would have gone down if it wasn't for the shopping cart. I managed to get into my car, but both legs stopped working. The slightest movement sent pain into my left leg like I have never experienced before and my right leg was starting to go numb. I managed to make the 20 minute drive home (with multiple stops) in an hour and a half, and my husband had to get me out of the car and into the house. My legs were shaking so bad, in pain, and not doing what I wanted them to. Every step to my bed was unbearable and my husband was bearing almost all of my weight.

Once in bed, I had white hot pain shooting down my left leg, and spasms literally moving my leg. After some "special" lollipops, I was able to get to sleep.

Saturday, the pain was down to about a 7 and although I needed help getting out of bed, I at least was able to move around with my father in law's cane. My whole body was spasming. Back, arms, abdomen, and legs. The burning feeling in my legs was extreme. Everytime I got up, I could hear my heart pounding in my head, hearing was in and out, I broke out in a sweat, and my poor scared hubby said my face went completely white

Today, I am moving slow, and still sore (4-5). The burning is still pretty intense and the previous numbness in my left foot has spread a little more. My left arm and my back are still having spasms, it takes so much to just get up and move, and I feel so foggy. I just left a pan on the gas stove with the burner on! Usually it's just small things like putting the milk away in the microwave, or giving hubby the deer in the headlights look cause I don't remember what we are talking about. I could have burnt my house down.

I had a Pilonidal Abcess removed 4 years ago, and the local didn't work on me, so I had the entire excision done while screaming in pain. I had thought that that was the worst pain anyone could ever experience, until what happened to me on Friday happened. I am not imagining any of these symptoms. SOMETHING is wrong, and no one will give me an answer.

What I don't understand is why aren't I being referred to a MS specialist to prove to me that I don't have it? Why haven't I been sent for a repeat MRI including spine and with contrast? I think that logically, they would be the best to rule it out, and put me on the right path, instead of being in limbo for 2 years.

It's hard to believe that I am not focusing on this one specific thing, because of my posting here, but I have been doing research on a lot of other potential causes (SLE, MG, Central nervous system Angitis, Arnold-Chiari deformity, CIDP, ect.) and none of those seem to fit me. Again, I just want answers.

Sorry for the disjointedness of this post. I am just so frustrated that doctors keep saying it's a possibility, but seem to be doing nothing to properly rule it out.

 
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Old 12-09-2012, 03:30 PM   #6
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Re: Still in Limbo - Just another Update

Thanks for the update. I can well understand your frustrations because I think some of your problems lie within the health system you have to navigate. I certainly hope that you can get answers soon.

The sciatic pain is terrible. Mine is still lingering in my left leg and occasionally my left hip. I have been out when it first hit and I remember how lucky I was to be close to home at the time. As i write this, I have my heating pad on my left side.

Your doctor is right that it takes patience. The unknown and the lingering, seemingly endless waiting and testing is indeed frustrating. I consider it worse than the disease itself.

I am glad your pain is lessening and I hope tomorrow it is a 0/10. 7/10 is still miserable.

You are still in my prayers. Stay strong.
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Old 12-10-2012, 03:37 AM   #7
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Re: Still in Limbo - Just another Update

Hi Mama. Your story brought me chills. I feel your pain. Im so sorry that you are going through all this. As people in the U.S. talk about how wonderful it would be if we actually went to National Health Care, I think about stories like this and know that we are very fortunate not to have it. Can you get to the US for any help? At this point in time, I really wish I could bring you into my home and take you to my doctor. No one should feel the way you do...

But seriously, any chance of you coming to the US and paying privately for some testing, OR even getting to an emergency room? You shouldnt have to live like this any longer....the answers are right there, as you said, those tests need to be repeated..but with your health care system, you really are at a disadvantage until its your turn to get them done.

Please feel better. Sending you prayers for strength and painfree days...and to your husband, for having to witness this. Im sure he feels completely useless right now. Tell him that he is also in my thoughts ....and that eventually this too, will pass.
Remember that.....answers are coming..ok.

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Old 12-10-2012, 02:47 PM   #8
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Re: Still in Limbo - Just another Update

Thanks Guys! You both are so kind to be on here helping everyone!

Jayhawk - I think I described my sciatic pain to you in a previous post. How can we know for sure that it is indeed sciatic? Years ago, when I used to get it, it was weeks before I felt any relief. But the past year or so it has had me puzzled as it is very short lived, and far more intense.

Your good wishes found me, and I was able to go into work today only moderately uncomfortable!

Nikki - Thank you for your empathy, and offer for a stateside visit! Unfortunately, we are not in any financial position to travel to the states. We do have private pay clinics here, but even still unable to reap those benefits. My father in law's cancer and hubby's accident from 2 years ago took a real toll on our finances, and we are just starting to recover from that. I used to be one of the first to brag about our Provincial Health Care, but now that I need it, I am seeing how flawed it can really be.

I called the Hospital today to inquire why it has been 6 weeks since my referral was sent, and I had yet to hear anything. I was informed that my appointment for the EMG is April. APRIL. I have asked to be put on a cancellation list, but was told that "well since these are the best doctors in Ontario, it's not likely there will be an cancellations, but I'll put you down"
Had to bite my tongue pretty hard!

How do I go about asking my doc for another MRI, this time with proper protocol? At least they should be checking for pinched nerves or something?

 
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Old 12-10-2012, 03:24 PM   #9
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Re: Still in Limbo - Just another Update

Hi. An MRI wont show pinched nerves...only a CT scan will show that. Im not even sure how to ask for proper protocol for you.....basically, proper protocol for MS, is to scan both Brain and Cspine with and without contrast, using the MS guidelines...but the doctor has to be looking to dx or rule out MS.

A common CT Scan of the Cspine or lower, would show any type of pinched nerve or irregularity.

Im sorry that you have been through so much. You are amazingly strong and that strength will get you through this! Im glad you were able to go to work today, even if you had to force yourself. Please know you are in my prayers.

Keep us posted?
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Old 12-10-2012, 03:55 PM   #10
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Re: Still in Limbo - Just another Update

Quote:
Originally Posted by GunnersMama01 View Post
Thanks Guys! You both are so kind to be on here helping everyone!

Jayhawk - I think I described my sciatic pain to you in a previous post. How can we know for sure that it is indeed sciatic? Years ago, when I used to get it, it was weeks before I felt any relief. But the past year or so it has had me puzzled as it is very short lived, and far more intense.

Your good wishes found me, and I was able to go into work today only moderately uncomfortable!

I am happy your pain is much less. Sciatic pain, yes, i remember your describing it previously. My sciatic pain cycles can be short 1-2 weeks or long 6 months. It really depends on your body. If it is a pinched nerve or something non-neurological, then a CT should "see it". For my sciatic pain, following a VEP the neuro included my t-spine and there were active lesions there.

Have you had a VEP or an MRI which included your t-spine?

Again, I am very happy you could return to work. Your father-in-law's cancer and your husband's accident brought much stress into your life. Your plate is "full" and this stress can be adding to your woes and causing symptoms to present.
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Old 12-10-2012, 05:40 PM   #11
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Re: Still in Limbo - Just another Update

Quote:
Originally Posted by MSJayhawk View Post

Have you had a VEP or an MRI which included your t-spine?
I did have the VEP and as far as I know it was "normal". The only MRI I have had was just the head, without contrast.
My concern is that at the time I had the MRI, I didn't have any active symptoms, and my Neuro only read the Radiologists report, without seeing the images himself.

I have heard you guys all saying to make sure that Neuros look for themselves, and not just go by the radiologists report. How do I go about this? I can't choose another doctor to look at it, and if I ask for a referral to another doc, I will probably be waiting till this time next year!

Hubby's opinion is that if I have another "attack" he's just going to drive me the 2 hours into the city and hit the ER there. Unlike the little hospital in my town, Toronto actually has the teaching hospitals with all kinds of doc's on call (inculding Neuros)

 
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Old 12-10-2012, 06:18 PM   #12
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Re: Still in Limbo - Just another Update

If your neuro depends on a radiologist to look at your MRI and does not see it, you are seeing the wrong doctor. Even if you are not experiencing an attack, if you have or had attacks, you will be able to find evidence. When a contrast dye is added, the active lesions will "light up".

You have to see an MS Specialist in order to bring you the answers you need. I certainly agree with your husband about driving to the ER. The 2 hour journey could be the best two hours you ever experience if it means answers. The nearest MS Specialist for me is about a 2 hour drive each way. For me, it is well worth it.
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Old 01-15-2013, 01:30 PM   #13
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Re: Still in Limbo - Just another Update

Hi guys!
I saw my neuro yesterday, with my husband there to back me up. I described what happened last month and he didn't seem too concerned. I think he thinks I am making this all up. He did yet another basic exam (strength and reflexes), still the same. He still has yet to do any Sensory system testing, Cerebellar testing or even the very simple Babinski Test.
I was able to get him to order another MRI, as it has been almost a year, and it is of Brain, C-Spine, T-Spine and Lumbar, without contrast. Unfortunately, he didn't state "MS Protocol" so I am worried that spots will be missed or overlooked. I have pretty much lost any respect for him and am just counting down until I see the other Neuro at Toronto General.

 
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Old 01-15-2013, 01:41 PM   #14
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Re: Still in Limbo - Just another Update

!So sorry and that is ridiculous! What is the harm in him just adding "with and without contrast" to the order? So sorry.

 
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Old 01-15-2013, 01:42 PM   #15
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Re: Still in Limbo - Just another Update

Given the health care system you have to navigate, I think you are doing really well. Unless you can be seen by an MS Specialist or a doctor with MS experience, the road ahead is still going to be slow. No matter, we will still be here for you.

Sometimes we may feel the doctor thinks we are making things up, and some doctors unfortunately may do just that. I hope you are blessed with a doctor who will work with you diligently in order to get you a diagnosis- a proper diagnosis.

In the meanwhile, given your situation, you really are making the best with what you have.
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