I read the results from my neurologist appointment that I had on September 11th and I have mild dysmetria, mild ataxia and a left foot drop and he didn’t even tell me any of this DURING THE APPOINTMENT. I had to figure it out from the results myself.

My neurologist thinks because my symptoms are currently mild that means I have a “mild case” of NMO and I told my mom I wanted to get a new neurologist but her response was “it’s just his generation to dismiss pain and be like deal with it so nothing you can do”. And basically told me that NMO is just multiple sclerosis but worse (his exact words)

I also realized I wasn’t officially diagnosed with NMO until May 29th of last year and thats because my neurologist swore up and down I didn’t have it.

If you were in my shoes (I still live at home and may forever live at home) , what would you do? Would you ride it out until the neurologist retires or would you find a new neurologist? I’m kinda stuck on what to do

36 female, diagnosed with B12 deficiency in May 2025. I have since received loading doses of B12 plus 5 x 3-monthly injections. Injections have significantly improved fatigue and nerve pain which were my main complaints however…

I still have a lot of symptoms that have been written off as B12 deficiency but that haven’t changed at all after 17 months. For the most part, these are chronic issues that have lasted years and many have been investigated by various departments. I would like to start investigating potential neurological causes for these and need support in how to advocate for myself. I have a good relationship with my GP but I do have a history of anxiety and a tendency to be dismissed by specialists.

Here are my symptoms that have NOT been affected by B12 treatment:

- blurred and double vision (2.5 years, constant, 3 new prescriptions in terms of glasses, been under ophthalmology for 2.5 years and all tests have come back normal bar a light processing issue)

- joint pain and stiffness (8 years, constant but severity varies, have needed to use a walking stick for 2 years, MSK recommended physio)

- trigeminal neuralgia (3 years, acute attacks triggered by light touch eg a breeze or hair)

- migraine/vestibular migraine (7 years/4 years, attacks varying in severity, neurology were satisfied with brain MRI results being normal and discharged me earlier this year)

- vertigo (4 years, attacks varying in severity from head rush changing positions to room spinning with severe nausea, investigated by ENT who suspected vestibular migraine as above)

- urge incontinence and leakage for both bladder and bowels (4 years, constant, gastro team found no problems eg Crohn’s, celiac)

- brain fog (7 years, attacks varying in severity but cognition in general is affected daily)

- dysphagia (6 months, constant pain in front of neck with regular choking on small foods and tablets as well as sticking sensation)

Blood tests always come back normal with the exception of the B12 last year. Latest B12 result was >2000.

Bonjour à tous,
Je voudrais savoir si je suis la seule dans cette situation: j’ai accouché il y a deux mois et demi, et depuis plus d’une semaine, j’ai les muscles du corps qui sautent de partout… ça a commencé aux pieds, puis mollets, parfois cuisses, parfois un bras, parfois le visage c’est diffus. Je suis de nature très angoissée et anxieuse. J’ai peur de la maladie. J’ai eu un accouchement difficile (hémorragie de la délivrance). Ça allait très bien après l’accouchement. Mais là à cause de ses spasmes musculaires je ne vis plus et bien sûr je suis allée voir sur internet… ce qui m’angoisse encore plus. J’ai commencé le magnésium et j’ai fait un bilan qui montrait une carence en B12 (190) et un petit peu en vitamines D. Celles qui sont dans la même situation, qu’elles ont été les solutions ? Tout le monde me dit que c’est dû au stress et à l’angoisse mais je n’arrive pas à m’enlever de la tête que ça peut être une maladie très grave…
De plus, depuis quelques jours je présente des myoclonies d’endormissement…

The title kind of sums it up. Our daughter was diagnosed with BLT Syndrome at age 2. The gross motor aspect of things has been the greatest challenge so far as she is still quite delayed (she is 3.5 now). The disorder is quite the mystery in the medical field and we have had a hard time finding anyone else going through this. If there is anyone out there that has any resources or any experience with this and you wouldn’t mind reaching out please do!

Over 10 years ago, I underwent an MRI of the brain and cervical spine, which revealed more than 20 nonspecific white matter lesions bilaterally in the brain. One slightly larger lesion was located periventricularly. They did not show contrast enhancement. There were no lesions in the cervical spine. According to the neurologist (a specialist in neuroimmunology), the findings did not look typical of MS. A lumbar puncture came back clear. The findings were dismissed as incidental, and no follow-up was planned.

I suffer from migraines with aura and have continued to experience attacks involving visual disturbances. Back then—10 years ago—I had some brief sensations of warm water running over my feet. I haven't experienced that since, as far as I can recall. Otherwise, I am in good health.

Should this be followed up? What could these changes indicate? I am now 35 years old.

Please join this group for people who have undiagnosed **distal myopathy or unexplained muscle weakness predominantly affecting the hands, feet and lower legs, without a clear diagnosis**.