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Miss Diagnosed

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Hi everyone, I am new here, as my screen name states I have been misdiagnosed over and over. I was diagnosed with MS in 2012, but in 2013 was told I don't have it because the white spots did not multiply on the MRI...I rejoiced like you couldn't imagine, now that I have been unofficially diagnosed with PLS, I am not rejoicing any longer and wish I could go back to when I "had" MS. (by unofficially diagnosed with PLS, I mean the doctor reading the test results say it fits and that the signal to my legs, especially my left leg, takes too long to reach my brain)

A little info on me:
I have:
~Dystonia
~Problems swallowing at times (it comes and goes)
~Problems talking, I can't yell, and when I talk too much my voice cuts out and I choke or if I get excited and talk my voice cuts off and I gag
~My right leg will become immobile when I am shopping with a cart, I must drag it to walk and lean on cart...this comes and goes
~My right leg will freeze solid and the foot will turn into the ankle and stay that way for hours, once again this happens occasionally (5-7 times a year) when it doesn't freeze solid, it will become so stiff I must drag it this happens when I walk a lot (meaning going to the grocery store)
~My left leg will suddenly have no feeling and I will fall
~I will have what I call "foot drag", that is when I can't lift my feet to walk and must use the walker and drag my feet and swing my hips to walk
~Twice in the past two years I have woken up with my entire body tingling and unable to take a full breath
~I have problems walking due to the stiffness and the weakness
~If I close my eyes and try to stand with feet together I sway and correct myself but then after about 30 seconds of thinking I am doing good I start to sway so much I fall
~I have for the past month after a nasty fall, have the feeling of someone punched me in my arms on both sides and I can't lift my arms. I woke myself up because I tried rolling and the blanket was on my arm was too heavy (it is a very light blanket)
~I have electricity running through my feet like I stepped on a live electric wire
~I have "heartbeats" in my stomach, legs and arms
~I failed nerve conduction tests
~I had I believe it was an EMG that showed it takes prolonged time for the signal to reach my legs, it is worse in my left leg.
~fatigue is an issue, I get 8 hours sleep, wake up for an hour, so tired to back to bed for 4 hours, wake up for half hour and go back to bed, this comes and goes for about 6 months now and lasts for 3 days up to a week and a half.
~I had hyper reflexes back in 2012-2014, and now I have no reflexes at all, when they were hyper and he hit my elbow, it would send me jerking uncontrollably and contract my arm into my chest.
~From 2012-2013 I had massive involuntary movements, I no longer have them, now I get them only occasionally and when I do it is when I am sleeping, I will wake up to my elbow on the bed and my arm raised and my hand going in circles about 100mph and I have no feeling whatsoever in the arm when this is happening! I only wake because it makes wind that brushes on my face.
~I wake up to no feeling from my elbows down, I move my arms but from the elbows down is completely non existent and they violently fall back and forth, I can move my elbows and shoulders but my lower arms have no feeling, this usually happens after I do mopping or sweeping the day before
~I have Babinski's sign
~I have a small cyst/tumor in my spinal chord
~In 2013 my CPK was 328, then it normalized, then it was high again but not that high I think it was 212, then checked it recently and it was in the normal range.
~I have weakness in my left hand due to an injury from 2011, I will drop plates, cups, can't cut meat, but if I squeeze the doctors hand it clamps down and won't let go!
~Twice in 2013 I tried to get out of bed, took one step and collapsed, I laid on the floor with no feeling whatsoever in my lower body


In 2014, a Doctor took one look at my contracted hand and said, "that is ALS" and sent me for a test where they put a needle in your tongue to test the muscles, I passed that test even though I have problems swallowing and talking (that come and go).
He then said "it looks like you have PLS" and he is sending me to the Mayo Clinic to confirm.
I researched PLS and one of the symptoms is not stiffness, so I am confused.

My question is, does this sound like PLS to you? Or does it sound like spinal stenosis? I went to a major hospital in NYC in 2013 for something unrelated and was told it sounds like I have a compression, yet all MRI's show no compression. I understand you can't diagnose me, but is there anything that I have written that would make you say it is related to the spine and not this disease? The more doctors I go to, the more I am misdiagnosed.
I am 45 and otherwise in perfect health.

I am sorry in advance for such a long question and so many details, but I am afraid of the Mayo Clinic and keep postponing the visit. On one hand I want to know what is wrong, but on the other hand I am scared to know! I guess I am just looking for someone to encourage me and say it sounds like its spine related and the doctor was wrong to say it looks like PLS, but I also want honesty so I can brace myself if I am confirmed with PLS. When I was misdiagnosed with MS I was devastated, I am so afraid to hear it be confirmed as PLS and not know how to handle that diagnosis!
If you were diagnosed with PLS or ALS, was it at a hospital like the Mayo Clinic? Do they just tell you that you have it and then let you go home, or do they keep you awhile until it settles in?

Thank you in advance for taking the time to read this and helping me out!
Sending love to everyone here!
 

lgelb

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OK, so the server ate my long answer. Go to Mayo (or another closer clinic; search a clinic map). You need to plan your life. On what you say, you could have PLS. Get a copy of whatever imaging has been done, including the hospital in NYC, for Mayo. Read the stickies on getting diagnosed. You could have mild cord compression and an MND, too. If you have an MND, PLS is the one to have. Mayo will send you home if you have it, you won't stay over, but you will have the option to go to a clinic (closer to home) every few months to get help with things you need, like equipment.

If you dealt with possible MS, you can deal with being diagnosed w/ PLS. I'm sorry for your long slog but the best way to pay it off is to finish it.

Best,
Laurie
 

Green Queen

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I too was diagnosed with MS and now been told PLS.
As Laurie says, it's the one to have out of the MNDs.
Please get yourself to Mayo.
A definitive answer will only do you good. It will give you direction.
All the best, Janelle x
 

gooseberry

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You are closer to Penn and Hopkins. You might want to consider them especially if you can travel there regularly.
 

lgelb

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Steph, she's upstate so those are still a hike. Yale, Stony Brook or New Britain are probably the closest options. Proximity to transit might be a consideration as things progress.
 

Miss Diagnosed

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Thank you all for the replies! I didn't mean to confuse anyone, but I put in my previous address to remain anonymous, I am now closer to Florida than NY, but my dad still lives up in NY around the Kingston area. I am in contact with the Mayo in Florida, they are waiting for me to send my medicals, but I am struggling with needing to know and not wanting to know.

When a doctor says "you have a neuromuscular disease", is that the same as a MND?

Janelle, when you were misdiagnosed with MS, did your symptoms come on rather suddenly? I had an injury from direct radiation exposure (freak accident from a malfunction) in Jan 2011, diagnosed with RSD/CRPS in February 2011, by August 2011 the RSD spread to my right arm which is extremely rare I am told, then in October 2011 was my first symptom in the legs, I was at the airport and suddenly had a mildly stiff right leg and couldn't walk without dragging it, it then spread to the left leg with sudden weakness and within a year I had dystonia. That is when they first diagnosed me with MS because I couldn't walk and failed the Evoked Potentials test (I passed the hearing and vision but failed the others) it stated, "Consistent with a central lesion" even though the brain MRI showed only small white spots and no central lesion. That is when I took the results to an MS specialist who ran another MRI and said I don't have MS and ran an EMG (the test that sends electricity to test the response time it takes to reach my legs to my brain, I think that is what it is called) and when those numbers came back in red, I was told I have a neuromuscular disease and was sent to another doctor who said I have a motor neuron disease which he believes is PLS because I passed the tongue test where he puts needles on both sides of the tongue and measures my muscles in the tongue.

I am going to get the remainder of my medicals sometime this week if I am able to drive, and I will call the Mayo and set up an appointment. I know I must sound ridiculous asking so many questions when one trip to the Mayo will answer them...its just I am the type of person that needs to brace myself a lot before I get bad news.

Thank you all for listening and helping me, it means more to me than you will ever know!

I will update you all soon.
 

Nikki J

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Neuromuscular disease is generally a broader term than MND. Mayo JAX has a great reputation At least a couple of people here have been there. It is a good place to try to get this sorted out. The EMG is the needle test. The NCS is the one where they measure distances, apply electrodes and give you shocks that make the muscle jump. There is also a test called TMS where they send the signal from the top of your head to an extremity and it jumps. That is less commonly done at least in the US
You have already been through a lot. Hope Mayo can get you answers
 

Atsugi

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There are dozens of neuromuscular diseases, some better than others. Good luck. --Mike
 

Miss Diagnosed

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Thank you all for your replies.

I called Mayo in Florida and she assured me that there would be appointments available in mid February, so after booking my travel and spending 3 hours on the phone this morning while she took all my information and cleared my insurance, she transferred my call to Markell in Neurology, once again I had to state my symptoms and since I was running out of breath, I gave him the shorter version, he then told me, "we are booked solid, try Minnesota", I explained I just spent three hours on the phone clearing everything and was guaranteed you don't book more than 2 months in advance and I was assured to get an appointment mid February", he then told me that is true but because they don't book in advance they book up real fast and to call back after Springtime to see if they have anything available. When I tried explaining how can he be booked through February if they don't book more than 2 months in advance as the dates needed are more than two months in advance, he cut me off and told me to try Arizona.

I am defeated, and upset! Why would one person tell me one thing, let me book travel, and then the other person tell me different, travel from where I live is not cheap, especially when I can't fly (the vibrations of the plane send my body into full contractions and stiffness, so to travel outside of where I live, it must be done by cruise ship, which is not cheap and not flexible with dates).
I just feel like Markell confused where I live with Mexico, or because I gave him the shorter version of my symptoms he brushed me off, I told him I failed all these tests, its been over four years and no one out here has been able to diagnose me and I was referred to the Mayo clinic from my last doctor as I am getting worse and not better...but he just brushed me off and asked if there was anything else he could help me with.
I am beyond defeated, and so upset, now I will be in Miami with no doctor to see.

Can anyone refer me to a place in or around Miami (or anywhere in Florida) that I can go to and get a diagnosis? I checked the map and there are numerous places, such as Kessenich Family Center, but it appears they treat people already diagnosed. I don't have the voice left to call all the places on the map and was hoping someone can refer me to a couple places that I can call.
Because its difficult for my husband to take so much time away from his job, I need a place that if they needed to run a few tests it can be done at the place and I won't have to make an appointment with another facility.

Thank you all in advance for any assistance you can give me in finding another center!
 

Nikki J

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University of Miami has an ALS clinic Dr Benatar is wonderful no idea of how hard it is to see him but call
 

lgelb

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Miami = the center MD mentioned. Any ALS center on the map can deliver a 2nd opinion. If that doesn't work w/ your schedule, MD, Ft. Myers would be next-closest.
 

Miss Diagnosed

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Thank you Nikki and lgelb, I will call the University of Miami tomorrow.
 
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