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Mysterious illness, the doctors don't know what it is
Hello everyone, something horrible happened to me at the beginning of October 2023 and I still haven't recovered from it. I followed a keto diet and ate only meat and drank very little water because even water started to disgust me from meat.
I started vomiting like crazy and threw up everything I would eat. Then I stopped the diet and went back to normal eating.
But I noticed that my legs were so STIFF as if they were in clamps, as if I had a band around the knee and lower legs that was squeezing me harder and harder. I tried to squat but I couldn't get up from the squat. The next day I could not get up from a sitting position.
I couldn't get up from the toilet. When I went outside, my legs were so weak that I couldn't walk up a single step. I could not cross the threshold. They were stiff and stood as straight as if they were made of wood.
That feeling that my legs were not mine was from my knees. I felt like there was some liquid inside, and the feeling in my legs changed when I touch my leg as if there was something inside.
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.
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 rheumatism factor is 95 but ccp is negative. What disease do you think this is besides gout?
My foot was stiff for 6 months and my knees were even worse.
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I got gout, but you know what worries me that I had another disease because my legs were stiff from the knees up and I didn't have the strength to climb the stairs, is it possible that it's gout
Thank you soooo much ❤️❤️❤️❤️❤️
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1 ReactionWas the weakness in your calves and feet or your thighs (quadriceps) and/or buttocks? I have read that gout can be tied to peripheral neuropathy which could be affecting your lower limbs/muscles.
https://www.arthritis.org/diseases/more-about/stages-of-gout
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3 ReactionsYou may want to go to a neurologist to get neurological testing (EMGs, nerve conduction study, etc.).
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4 ReactionsWeakness and stifness which was so strong, it went from the knees down, I didn't feel any symptoms in the thighs. My knees were literally in a bind.
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1 ReactionDo you think it could be a nerve problem if there is swelling and synivitis. Is there a possibility that it is ALS if I get better and not worse over time. Als is the disease I fear the most in the world.
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1 ReactionI do think it would be good to get nerve conduction testing and EMGs to test how your nerves have been affected by synivitis and gout as soon as possible to prevent further nerve damage. Take one day at a time and try to get root cause of your symptoms. It would be good to follow a diet that limits/reduces animal proteins (increase plant proteins), reduce sugars and eliminate alcohol due to gout to prevent flares. I am having major neurological problems and getting a new neurologist for updated testing to check function and rule out MS. Try not to worry about ALS until you get more tests from a neurologist. They will also do specialized blood work tied to your nervous system. Hang in there and let me know how I can help share my learning with you (I have been on my health journey for answers since 2011).
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5 ReactionsThank you very very much ❤️❤️❤️❤️❤️I have questions for you and please answer me when you are able, it will mean so much to me❤️❤️
1. When I stopped the keto diet before and started eating carbohydrates, I felt fluid in my legs, as my legs were full of some water and swelling, and I had a different feeling in my legs. What do you think this is about?
2. My rheumatological factor is 95 3x higher than normal but my ccp is normal, I am 32 years old, how does this look like rheumatoid arthritis to you. I've had swelling around my ankle for 6 months, my foot is also swollen. I think I had water and in my knees, i.e. the remains of a BAKER'S CYST were seen on the ultrasound
3. I am very afraid of als and I can say that I am obsessed with it. Are you aware that als symptoms can go away/improve or just get worse. Does the swelling not fit in als?
4.
That it is possible to have gout in the knees, wrists and fingers at the same time and that this is all just a gout attack or is gout just an additional diagnosis
Please tell me your opinion, I really appreciate it❤️❤️
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1 ReactionHi,
Here are my thoughts:
1.). The keto diet stressed your system, you had high proteins causing uric acid build up. Your kidneys struggled processing and filtering this uric acid through your kidneys to excrete it (especially if you were not drinking a lot of water to support the increased animal protein). Your body started to retain fluids. The extra fluids impacted your nerves in your legs/feet due to swelling.
2.) I also had elevated RF/CCP due to inflammation and my immune system activated and was attacking my own body. They ruled out RA/lupus. Since you have been diagnosed with synovitis and gout (painful arthritis), you may not have RA. The fluid retention is due to keto/uric acid overload to your kidneys which triggered synovitis/gout. Gout can affect many joints, including those in your hands. Your RF may have elevated if your immune system activated to defend itself from the stress of the keto diet.
3.) I do not believe fluid retention and swelling is tied to ALS. I do not think you have ALS and your symptoms are tied to keto diet/high uric acid, synovitis/gout and joint and nerve impact due to swelling.
4. Gout can affect many joints throughout your body. Once you have it, you can have flares that bring back the pain/swelling. You will want to make sure to follow a diet to reduce the risk for gout flares and reduce synovitis swelling/prevent further nerve damage. A neurologist can test how synovitis/gout is affecting your peripheral nervous system (through EMG testing of upper and lower body limbs/nerve conduction and small fiber neuropathy punch biopsy).
Hope this helps❣️
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4 ReactionsI love you, you are the best ever ❤️❤️❤️❤️❤️ Thank you soooo much !!!!!!❤️❤️❤️❤️❤️
When I started to eat normally, albeit a little more than normal, I ate 3 McDonalds a day, a lot of ice cream and Starbucks, I felt a band squeezing me around my rib cage like MS HUG, but as soon as I went back to the diet in November, the same day I no longer had it strap under the chest like MS HUG. I went for an MRI of the brain and the entire nervous system and I don't have any changes, the MRI is excellent, what do you think why this band around rib cage happened? I also had a bloated stomach then.I also have stones in the gall bladder, but the pressure was not only on the right side, but also on the left side.
Can the rheumatoid factor go away and do I need to take it again? By the way, I also have elevated sedimentation, at one point it was 85 and now it has dropped to 26, it's normal up to 20. But during that period I was putting crowns on my teeth and at the same time fixing my teeth, so maybe it's because of that.
As for my pathological fear of ALS, I see you have tremendous medical knowledge after how long can I be sure I don't have ALS since this attack in October. Because as far as I've noticed, als worsens a lot after a year, doesn't it?
Thank youuuuuuuuuuuuu
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2 ReactionsI think your pain in your abdomen/chest area is tied to your gallbladder and gallstones and not MS. Ironically, I just got diagnosed on Friday with biliary dyskinesia and may need to get my gallbladder taken out. I had a similar MS hug symptom and think it is my gallbladder. My gallbladder is not working proper (test showed mine is releasing only 7% bile to digest food when it should be a minimum of 35%-40%). You may have gallstones due to high protein/fat keto diet.
Your RA/ccp/sed rate may have been elevated due to stress on body with keto/synovitis/gout and inflammation. Once you can get the inflammation under control, those tests should stay in the normal range.
If you can focus on improving your diet and managing your synovitis/gout and prevent flares, that will help you reduce swelling and improve nerve health. I really do not think you should worry about ALS at this point. A neurologist who can do the nerve testing may help to alleviate your fears about ALS and give you more answers and information. I totally empathize about fears of the unknown. I was so afraid about getting a MS diagnosis and different testing helped to rule things out.
Have a good night❣️🙂
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