Behcet's muscle spasms??: Has anyone ever had... - Behçet's UK

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Behcet's muscle spasms??

Psalm116 profile image
9 Replies

Has anyone ever had muscle spasms with Behcet's? Just in the past several months I have had bad muscle spasms in my neck and this is new for me. Thank you!!

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Psalm116 profile image
Psalm116
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9 Replies
rooser1 profile image
rooser1

have you had your b vitamins checked? when i was low, i would have pretty big twitches

Psalm116 profile image
Psalm116 in reply torooser1

Thank you for your response. Yes, I've had my B vitamins checked and my magnesium levels checked and they are all good.

I read this yesterday .....

Behçet’s disease is a rare autoimmune disorder characterized by inflammation and damage to blood vessels, mucous membranes, and skin. Neck muscle spasms can occur as a symptom of Behçet’s disease, particularly due to the involvement of the cervical spine and surrounding tissues.

Causes of Neck Muscle Spasms in Behçet’s Disease

- Neck strain or sprain: Behçet’s disease can cause inflammation and damage to the neck muscles, ligaments, and tendons, leading to strain or sprain, which may result in muscle spasms.

- Cervical spine involvement: Behçet’s disease can affect the cervical spine, causing inflammation and damage to the joints, discs, and ligaments, leading to muscle spasms and stiffness.

- Nerve compression: Compression or irritation of the nerves in the neck, such as the cervical nerve roots, can cause muscle spasms and pain.

- Systemic inflammation: Behçet’s disease is characterized by systemic inflammation, which can affect multiple joints and tissues, including the neck muscles, leading to spasms and stiffness.

rooser1 profile image
rooser1 in reply toPsalm116

i can say with someone with Neuro BD, my neck is like always perpetually stiff... i still get minor twitches in my shoulders but im fairly certain that was related to b6 for me as it decreased when i started supplementing. Happens more when i am very tired.

be wary of levels being "okay" i was borderline in/out for years and they told me it was normal.... wasnt until i looked back and saw they were borderline and no, i was not okay.

your b12 should be above 500, minimally.

gillianTS profile image
gillianTS in reply toPsalm116

Where did the information come from please?

Psalm116 profile image
Psalm116

I really appreciate your information. Thanks

Badrm1 profile image
Badrm1

hi there hope you’re doing well, yes i have that special when i am on deep sleep i wake up screaming with the pain because muscles spasms

gillianTS profile image
gillianTS

Hi, yes definitely have this daily. Throughout my neck, face, shoulders, biceps, runs throughout my pelvis and calves.

Had a muscle biopsy in my bicep, hugely painful no pain killers or any form of numbing treatment... anyway the neurologist wanting to rule out Myositis, the fact I was already taking Azathioprine, a drug used to treat this condition did not seem to matter... anyway told I did not have Myositis. I did seek a 2nd opinion on the possibility of not being identified due to Azathioprine and I was advised it was highly likely Azathioprine would provide inconclusive diagnosis. Neurologist wrote me off with a migraine diagnosis despite not being able to provide satisfactory answers for muscle stiffness in major lower muscles etc.

Been through chronic neck etc pain this year, been feeling very low and no help. Big problems with pelvis too. I told the head of pelvis dysfunction that I also clench my teeth at night and wear mouth splint every night. The lady said that is very interesting because there is a known link between clenching and grinding of teeth and pelvic dysfunction. Gynaecologist diagnosis hypertonic pelvic floor....

My Gastroenterologist is prescribing me diazepam to try and help my muscles. Pelvis Dysfunction are going to try and get me to relax my pelvis and pelvic floor and help my neck, face etc.

This has all been going on since around 2016 - 2017 I have complained repeatedly but they just shrug their shoulders and blame Behcets, blame migraine, write prescriptions. Meanwhile things just get worse. All I want is a proper diagnosis and I am sure more things would improve if they all spoke to one another. I'm hoping the pelvis dysfunction people can help. Rheumatologist seems to be nowhere these days, last 2 appointments I have not had clinic letters written, my GP not received either. Good job I keep notes.

Started taking valerian root to try and help me relax and sleep. Started magnesium supplement twice daily, both I feel have made a slight difference.

Sorry for the long reply and moan.

If anyone has any ideas on treatments I would love to hear.

Okra13 profile image
Okra13

Yes, I get muscle spasms and tremors. I've found B12 1000mcg injections 3x / month, and Fish oil/ D3 supplements help a lot. I also take a low dose (5mg) of diazepam(Valium) at night if my muscle spasms are really bad.

My B12 labwork has always been low normal but my MMA (methylmelonic acid) test indicated by body wasn't absorbed it well so I do injections and it's absorbed through the muscle and it's helped a ton.

Islandbechet profile image
Islandbechet

It's part of the daily bases, it gets better. I use colchicine daily and if I don't take it I get the muscle spams, even though once I had it in the chest. The sauna or steam helps me. Also massage.

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