Mysterious symptoms doctors do not know what this is

[Tia1]

Hello everyone, I'm in a big problem, I have some mysterious neurological symptoms, and the neurologists in Serbia won't examine me because my MRI is clean and they think that if I don't have lesions, I'm not sick.

My symptoms started at the end of September 2023 when I went on the Keto diet and lost a lot of weight. I was throwing up like crazy and had signs of dehydration in the form of thick white saliva, nausea and dry lips. I didn't go out for probably a month or two because I was so weak from hunger. But when I stopped dieting and throwing up I went outside but my legs were like wood. The feeling in the lower legs of my legs was like they were made of wood. I could not control my legs at all, they stood as straight as wooden and stiff. When I tried to climb the step I FELL. My legs were so weak, I had no control over them as if they were made of metal and I could not cross the threshold.

The worst feeling I had was in my knees, which were as if they were filled with cement, and I couldn't straighten them at all. I couldn't get out of bed because my knees were so stiff, to get into the bath. The worst feeling was after bathing in hot water, then I wouldn't feel my lower legs at all.

My knees are cemented, stiff. After 10 days of that, I went outside again, but when I came home, my joints and the entire left foot were swollen. That swelling was visible to the naked eye, my left leg was twice as thick. Then the terrible stabbing radiating pain in the big toe and all the toes started. The bridge of the foot, between the 3rd and 4th toes, there was some blistering pain that I could not lean on the foot. I felt like someone was hitting my foot with a hammer. The front of my foot and the roots of my toes are stiff and numb, I can't move my toes at all. Numbness and pain at the roots of the fingers. Pain in contact with material and fabric. It has been going on since October until now. Tightness around malice as if I have a grip. Stiff heavy leg joints.

It's like I have a band that tightens around the middle of my foot. I feel stiffness in my feet and toes, when I try to move my toes and when I bend them, at first I couldn't, now I can, but I feel stiffness in my feet and toes, when I try to move my toes and when I bend them, at first I couldn't, now I can but I feel stiffness in my feet and numbness
Changed feeling in the shins, as if they are numb and I can't feel them but not the needles. Does anyone recognize these symptoms and how does this sound to you?

Please help me, I'm desperate

 

[ShiftKicker]

Hi, this is not how ALS starts. Make sure to read here: Read Before Posting. It explains why sensory issues like tingling, pain, numbness, etc, and things like swelling or symptoms that improve point to something else.

Keep working with your doctor to track down what your symptoms might be caused by, but this does not sound like ALS in any way.

Take care

 

[Tia1]

Dg on your avatar is adorableBut I didn't even have tingling and tingling in the true sense of the word. Only weakness of the legs and such stiffness, as if my legs were filled with water or cement. My left foot is stiff and every time I move my toes I feel as if a band around the middle of my foot is tightening, the whole foot is tight and stiff, the leg joint as well as the band around it, knees. And what worries me the most is that I literally fell when trying to climb the stairs, how wooden and weak my legs are and out of my control.

 

[Nikki J]

It still doesn’t sound like ALS. You did not tell us anything about what the doctors you saw found on their exams and the tests you have had

 

[lgelb]

If there is clear swelling, take photos when it's at its worst and send them to your doctor, and perhaps an orthopedist or physio. A physio eval would do no harm regardless. I would also make sure someone has checked for a blood clot or bleed.

For some people, dietary changes can be very taxing and can cause fluid imbalances. And if you had a virus you didn't know about, all the more so. This certainly sounds more systemic or local than neurologic, so I would stay in touch with a good primary care clinician.

 

[Tia1]

It all started from dehydration and eating only meat when I started throwing up like crazy. When I stopped keeping keto, I started eating sweets and carbohydrates, my knees and lower leg became stiff. It was like having my lower leg in a vise. Pressure and stiffness in knee, I couldn't sit down or stand up because of knee stiffness. I couldn't climb one step, I would immediately fall to the ground. After 10 days I went outside again and my lower legs were still stiff and tight. But when I got home, my ankle and foot were swollen. It started with enormous severe and stabbing pain in my toes, especially in the big toe. My feet hurt like I had open blisters on my feet. Pain when touching material in the big toe. Swelling around the wrist and inability to move the fingers, stiffness of the roots of the fingers and bridge foot. Impossibility of changing and going down stairs. I had an MRI and I was diagnosed with Synovitis of the foot and ankle. My uric acid was 547 mmol/l in November, but now it's 350 mmol/l and I haven't taken any medicine. The stiffness of the upper part of the foot and knees, as well as the stiffness of the lower legs, has lasted for a full 6 months, with the fact that now I can climb the stairs, and for the first 5 months I could not even cross the threshold.

I'm in Serbia and the doctors don't want to help me, they say it will pass it by istelf. I am 32 yeras old.

I have some questions please help me:
1. Is muscle twitching constant/daily in als?
2. Can symptoms come and go?
3. Can there be a complete withdrawal of symptoms?
4. Is it possible to regain strength in the legs?
5. How long after als diagnosis do you see emng damage
6. How long can you not know you have ALS even though you have symptoms?
7. Can als be undiagnosed for 2 years?

 

[Nikki J]

1 twitching doesn’t have a pattern everyone is different
2 no
3 no
4 no
5 immediately
6 until you get the tests needed for diagnosis
7 no ( exception people diagnosed with upper motor neuron disease by the doctor’s exam. They sometimes progress to full ALS. This is not you because umn disease is clearly evident to doctors)

 

[lgelb]

As you know, high uric acid and big toe sensitivity are signs of gout and related illnesses, which are sensitive to diet and medications. Synovitis is a consequence of illnesses such as gout and arthritis, so treating the gout is one way to address the synovitis apart from anti-inflammatory and disease-modifying medications, such as ongoing swelling would suggest you might benefit from.

You can find anti-gout dietary information and try to eat/drink accordingly. A rheumatologist to consider the medications may be helpful if you have not seen one.

Again, there is no link here to ALS.