Awkward question for the ladies

Hi . I am glad you felt comfortable asking this question because I am fairly confident you are not alone. I hope others chime in and share their symptoms and experiences. There are loads of nerves in your vaginal area, so it makes sense that you would have MS symptoms there. Here is an article about restless genital syndrome, which is sometimes experienced by people with MS: https://multiplesclerosis.net/living-with-ms/have-you-heard-of-restless-genital-syndrome. It thought it might interest you. Your symptoms are definitely not just in your head. I hope you get answers and relief from your appointment. Keep us posted if you feel comfortable doing so. Best wishes! - Lori (Team Member)

Yes, I've had odd sensations there too, sometimes numbness, sometimes twitching, sometimes pain. Just a come and go type of thing. I'm sorry you are having these symptoms, especially in this sensitive area. It's good you are asking others living with MS about this prior to your appointment, but it's also good that your appointment is fairly soon. Something like itchiness may or may not be MS-related and it's extremely uncomfortable. Good luck with your appointment, and keep us posted. It will be interesting if your doctor has any information about this. Best, Debbie (Team Member)

I can relate! Sorry this is a little long. I am undiagnosed, but have been having strange (mostly sensory) symptoms for over 5 years now, that have accumulated over time including:
- Intense itching triggered by heat or light touch on my feet and a patch on my upper arms
- Periods of weeks at a time where the area around my anus (sorry ladies) would be intensely itchy. This would last for 30 seconds to a minute, go away and then come right back. Thankfully it's been over a year since I've had this.
- Tingling right lower leg and a patch on my back
- Fleeting or longer lasting hot and cold or numb feelings in a few different body parts
- Sharp stabbing pains in my ribs
- Times where I can't control my body temperature and I'm shivering or way too hot in alternation, so extra sensitive to temperature change
- Slight hearing loss in my right ear
- Phantom smells
- Unexplained tightness in my legs which is mainly in my hamstrings and mostly right leg
- Sharp pain in my vulva area when using the toilet or just at random times, which I still get randomly
- Very occasionally for about 3 hours to half a day or so each time what I now know is Restless Genital Syndrome or Persistent Genital Arousal Disorder! The only way I could find any temporary relief was to have an orgasm, and this had to be done many times in the day (which does not normally happen believe me)! It was such a frustrating symptom and almost painful


I had blood tests for diabetes, thyroid, B12 etc all fine and no deficiencies in other areas like vitamin D. My GP thinks I am too young for menopause too. Last September I had a period where new symptoms appeared, including weakness in my arms (mostly right) which have left me with mild intention tremors in my hands and the ability to drop things more often, slight speech and swallowing issues where I would sometimes get a tiny bit of food going down the wrong way and have to cough it up, and my words or letters would sometimes get mixed up, chewing could feel a bit slowed, continual tinnitus and random muscle twitches.


The worst symptom however was pain in my vulva that would radiate upwards a little in my pelvis just before and during orgasm. I would also feel my pelvic floor area 'twitch' at times. This only resolved after 5 months! Last year my GP referred me for a clinical suspicion of MS, which I didn't consider or know much about at the time, and he decided the vulvodynia was associated with the neurological symptoms and there was no need for a referral to gynaecology. At long last I have seen a Neurologist, and had the standard first appointment tests for balance, eyesight etc. which I passed with the exception of the tremor, and a brain MRI where only 1 potentially relevant lesion has been discovered, and I have been sent back on my way with 'benign neurological symptoms'. I am lucky as in I can still run, cycle and go to work and the symptoms don't stop me from functioning, however I know something is not right so will certainly be pushing for more tests if new symptoms arise. I have been advised to eat well, exercise well and keep a regular sleeping pattern as my symptoms will be worse when I am tired or stressed. Plus keep a symptom diary without obsessing over it. I didn't get fobbed off with it's 'anxiety' though like a lot of others.


I did recently come across a condition known as Dysautonomia, where the autonomic nervous system doesn't work properly at times so there is either more, or less activity than there should be. This could explain lots of my symptoms and perhaps the unwanted arousal symptoms we have both had.


Anyway, sorry for the long story but yes there are others who experience this, it's really not pleasant, and I would love to know how you get on at your appointment and hope your symptoms subside ASAP.

Thank you I have considered getting a second opinion, and am currently awaiting an appointment with a different neurologist, hopefully for further testing.