Differential diagnosis towards MND

[KimT]

I understand the head thing very well. Sometimes, when I wake up, I'm convinced today will be the day when I'm out of pain and can walk without a limp again.

Don't give up. If your diagnosis turns out to be MS, there is a chance of remission.

I know waiting can be hard. Hoping for the best.

 

[Salomeaa]

Hello!
Yesterday I had an MRI of the cervical and thoracic spinal canal. Everything was fine until the contrast was administered. It turned out that I have a severe allergic reaction - I'M SHOCKED! it was not my first MRI with contrast, the same preparation was always administered in the same dose.
I got a swollen throat, hoarseness, had problems with swallowing and huge allergic reactions all over my body. Several doctors and nurses flocked in, it was "active". The doctor said that if my life is nice to me, I will never get contrast again, because the next adventure may end with teleportation to another dimension. The strangest thing about all this is that (probably due to the drop in blood pressure), I was extremely calm and even laughed about it all, especially those blisters on my body that were huge and popped up like mushrooms after rain. The nurses undressed me and looked at me in horror - I gave them quite a fright. I had to wait several hours in the ER for everything to go down. I have hoarseness to this day.
They marked on my file that I was highly allergic to contrast enhancements and had everyone say, even to the dentist, that I had a severe anaphylactic reaction. As soon as my throat let go, they told me to drink lime with warm water, 2 liters of fluids, preferably warm, and told me to return home by taxi (my husband was at work, he could not be with me for the examination). Now I am waiting for the description of the exam to be sent, it is supposed to be in a few days, but due to the fact that it is the pre-Christmas period (a very hot and nervous period in Poland), it may be extended.
Today I feel extremely tired, my throat is still swollen and I have hoarseness, but the body has stopped itching and the blisters have disappeared. At night I slept intermittently, but I think it was from emotions and maybe from the drugs they gave me...

 

[Nikki J]

How frightening. You can develop an allergy to anything at any time. Repeated contact can eventually sensitize you.

I am glad you are ok. And yes the medications given for acute anaphylaxis could definitely keep you awake

 

[Salomeaa]

Nikki J, thank you for your answer, yes, that's exactly what the anesthesiologist told me, that with the suspicion of my diagnoses and the swallowing problems I have (they had all my neurologist's opinions from my examinations) another such shock can be fatal for me. I'm lucky! I did the examination in a teaching hospital, where there were a lot of doctors, anesthesiologists, all drugs at hand - the ER was a few meters away. They worked right away and as you can see - with good results Thank the Universe that I'm alive

 

[Salomeaa]

Hello
I got an MRI of the spinal canal - no sign of demyelination, no compression, no signs that would explain the paresis on the right side, muscle weakness and pyramidal syndrome.
Unfortunately, after the allergic shock after the contrast, I had a lot of bronchial spasticity - I suffocated for several days, I had to take medication. Better today, but not the best of my last days.
I also dared to tell my parents that I am diagnosed neurologically - that it could be MND / PLS ... Unfortunately - no support. On the contrary - my mother was furious with me that I had concealed from her that I was diagnosing myself, that I was "cheating" on her. I did not expect such treatment. The whole process of diagnosis and examination was not as difficult for me as my mother's reaction.

She couldn't accept that I didn't want to burden her with the entire diagnostic process. I have now told her "clean" resonances are. I feel guilty now, bad daughter. In a situation where my life changes, when I can't do what made me happy and happy (yoga, running, hiking) - my mother blames me, she is the victim because I lie to her. It's terribly hard.
Today is Christmas Eve. I didn't go to my parents because yesterday I was choking terribly, I couldn't breathe. I'm terribly sad, I guess from the beginning of the "disease" it wasn't so bad mentally. I was very afraid of the moment when I would tell my parents about the disease, but I didn't think it would be so bad.

My mother is depressed, she is undergoing psychiatric treatment, I know that she feels pain and anger and regret herself, but ... it's really not my fault.
I will honestly tell you that I feel that I have gone through the worst stage in my diagnostic process - it can't get any worse now, I can't be in a worse mental state - tired of being sick, being diagnosed, after a severe allergic reaction, suffocating, unable to catch my breath - and yet my own mother is angry with me for being a fraud. "Why are you doing this to me," she said. It hurts me so much.

 

[Buglaw]

I’m so sorry you are going through this. Having gone through the diagnostic process/telling people recently I will say that peoples reactions ran the board from incredibly supportive to odd, to rude. I’m sorry that your moms ended up on the rude side of the spectrum.

 

[KimT]

I’m so sorry but none of this is your fault. I’ve had two anaphylactic reactions to antibiotics. One was so bad I was hospitalized for several hours. They had to put me on steroids, then I was told to carry an epi-pen on me at all times.

Your mother’s reaction was unacceptable. My mother suffered from bi-polar disorder and she was frequently unreasonable. Back then, there were no meds that helped much. At this point you may need to stay away from her for awhile.

You have been very brave throughout your diagnostic trek. I know it’s hard. Try to interact with supportive people. My relatives did nothing for me. It was my friends who supported me. Take care of yourself and try to avoid the negative people.

 

[Clearwater AL]

Salomeaa, a lot of us are not too familiar with your country,

"I also dared to tell my parents that I am diagnosed neurologically - that it could be MND / PLS."

You might share, where and was the center an ALS/MND oriented facility?

Your Mom was upset you were diagnosing yourself? Your Mom is getting psychiatric help,
maybe you might seek help for Health Anxiety too. Your situation is complicated.

Hope you can get through these next few days... Christmas.

 

[Salomeaa]

Clearwater AL thank you for your reply
In Poland, it is difficult to get a diagnosis of PLS. Most often in Europe there is a general diagnosis of MND, where all motor neuron diseases are thrown.
I didn't diagnose myself.
First there was suspicion of MS, then when the MRI of the head came out clear and the weakness of the muscles on the right side started to deepen - neurologists started talking about the MND spectrum - I was prescribed an EMG which showed no denervation. Then the neurologist said it might be upper motor neuron dominant MND - PLS.
On 16.01 I have an appointment with a neurologist who specializes in MND diseases.

KimT thank you once again with all my heart for your support. You've been with me since the beginning when I post here. I am grateful for the help you are showing me. I feel your support strongly.

Buglow You are right, unfortunately. The disease shows a lot, not only about ourselves, but also about who we were to people we considered close.​

 

[Salomeaa]

Mom is angry with me that I didn't tell her that I was sick, that according to her, I "hid" this situation from her. I didn't say that I was going to the doctors, that I was doing tests, that I had an MRI.
I had a very hard last year - I had two serious car accidents (not my fault) - that's why these spinal resonances were so important, fortunately nothing bad happens. My mother's sister had a serious operation because she also had an accident - I wanted to spare my mother another stress related to visits, diagnoses (at the beginning the doctors were sure that I had MS). It hasn't been an easy year - unfortunately my mum saw our first car accident with her own eyes, when we were squashed in a sandwich between two huge off-road vehicles. Mom and dad were in the car practically right behind us. I wanted to spare them all the stress.

I am under the care of a psychiatrist. I take psychiatric drugs - antidepressants - duloxetine. I am also prescribed pregabalin.
I didn't make up the diagnosis of MND myself - I really wouldn't want to.

In Poland, very few neurologists specialize in neuromuscular diseases. We do not have any center that deals with this type of diseases. However, we do have centers that deal with the treatment and diagnosis of MS - in such a center they said that if the MRI of the head and spinal cord came out clean, there would be 99% no MS (of course, to be sure, in six months they advised to repeat the MRI of the head and spinal cord in the episode cervical).

- MRI of the head, spinal canal in the cervical and thoracic sections - clean, without any demyelinating changes, no tumor, no symptoms that would indicate a stroke
- ENG / EMG (EMG done only in the quadriceps femoris muscle) clean, no signs of denervation
- EEG clear
- Lyme disease ruled out, B12, vitamin D3, iron levels normal, CK levels normal
- in the neurological examination, pyramidal syndrome (damage to the upper motoneuron) - increased, but symmetrical deep reflexes, pathological symptoms (Babinsky, Hoffmann, Rossolimo, Oppenhaim) retardation of the right limbs (upper and lower) - pyramidal drift, muscle weakness on the right side (arm and leg), spasticity

 

[rao]

Sorry you are going through this, basically how I felt earlier in the month except it happened in a span of a week.

Day 1 - bloodtest, xray, brain+spine mri, neurologist checkin weakness, sensory, reflexes (brisk) then I got a report that says Upper+Lower motor neuron weakness, first impression ALS, all other testing clean.

Day 4 - EMG+NCS
Day 7 - 2nd neuro says ncs normal but emg is abnormal and agrees with 1st neuro's assessment and gave me Probable ALS conclusion (classic textbook case apparently). Basically the above ruled out all the auto-immune lesser alternatives.

Hope you get some good news.

 

[Salomeaa]

rao do you have pathological reflexes on neurological examination and clinical muscle weakness examined by a neurologist?​

 

[rao]

Yes I did, Neuro (both did) checked for clinical weakness for all 4 limbs and brisk reflex/stiffness.

 

[Salomeaa]

Hello dears
Today I was diagnosed with MND G12.2

 

[Nikki J]

Sorry to hear. So a non specific MND at this point?