Half year of nightmare without diagnosis

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TJJM

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Hello Dears!
FIRST of all, I’m very sorry for the poor english.
I’m asking for support and advice on what to do, because what is happening to me and the increase in the last 6 months does not give me life.
I am 34 years old, married, have two children (1 yo and 4 yo), nice job. I have never been ill, I have played sports, swimming, running.
In May 2020, I felt pain in the left arm appeared from day to day - from the shoulder to the fingers.
June 2020 - my hands (both) get numb, usually in the morning. Once I woke up in the morning with relief in my lower legs and forearms, hands and feet (both sides) numb. Hospital - lumbar puncture, CT head - excluded neuroinfection, Lyme disease, MS. I went home .
The next day I had terrible headache (it has never hurt in my life), the pain was severe, vomited, went back to the hospital and stay for a week.
I had an MRI of the cervical and head sections, ENG (suspected polyneuropathy) - all right, I was back home diagnosed with neurosis and post-puncture syndrome.
At home, I wasn’t able to walk, earlier I could walk 10 km, and now I couldn’t walk 1.5 km without a break to take my older son to kindergarten.
July 2020 - a psychiatrist excluded neurosis and send me back to a neurologist and rheumatologist.
The numbness goes away, but there was pain in my neck, forearms and lower legs (like soreness), I was tired all the time. Hospital - doctors checked strength ( normal, but felt "soreness"), reflexes, judge muscles, no vibrating, no fading.
FIRST time I asked for SLA - doc said "no in my life, girl!". They signed me up for an urgent myasthenic test (endocrinologist, vitamins, etc. OK). The test excludes myasthenia gravis (examination of the arm, leg and neck).

August 2020 - rheumatologist, suspected lupus or RA (morning stiffness of wrists, fingers, ankles, sometimes elbows and knees - once symmetrically, another day not. My wrist, knee, ankles around my feet were swollen several times). The results indicate unequivocally RA - ANA, RF antibodies, but ACCP and CRP, ESR normal. I am getting encorton and an anti-inflammatory drug. It's not bad, although still a bit stiff in the morning and head / neck ache.

End of August 2020 - I stopped inflamatory drugs. Encorton was left and I startem sulfasalazine.

September 2020 - Muscle / joint pains, fatigue return.

October 2020 - tired legs and arms, pain in the neck and head. Something "sits" in my throat, but I don't feel discomfort when eating and drinking, my tongue burns.
Laryngologist - everything is OK.
At the moment there is weakness and pain (top of the foot, under the knees and muscles) of the four limbs and neck, constant fatigue and this discomfort from the mouth: constant burning of the tongue and constant (when not eating or drinking) a feeling of obstruction and scratching in the esophagus .
Please let me know what is wrong with me, and what can we do with this. it’s really scary.
 

lgelb

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We can't say what's wrong, of course, but nothing you have said points to ALS and related MNDs, which is what we discuss here.

It sounds like there is a high index of suspicion for a rheumatologic disorder that may be more complex than at first thought. If you are not progressing in the diagnostic process with your current rheumatologist, you have the right to a second opinion with another.

Best,
Laurie
 

TJJM

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Thank you for your answear, I really apreciate this. Thanks a lot! Terribly weakness - just a few stairs or short walk with my oldest is exhausting. And strange feeling with tongue and esophagus :(
 
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