Tongue tip tingle

Recently diagnosed scleroderma affecting total digestive tract. Most annoying aspect - tongue tip constantly tingling affecting taste and texture experience, also lips need constant balm and face around mouth wrinkling, sometimes teeth and gums numbing as well. Advice/Help much appreciated.

[positivedaybyday]

Hi,

I'm catching up with my posts so sorry for the delay in replying.

Each individual can experience varying sensations on the Scleroderma Road.

The starting point is to write a daily diary of what the symptoms of the day are & how they are affecting you.

Do you have a referral to a Consultant who specialises in Scleroderma which will be under Rheumatolgy?

If so discuss these issues to help manage any problems.

You should be able to get leaflets from the hospital on how Scleroderma can affect many areas of the body.

There are also leaflets on special exercises for hands, mouth, body which once you start really do help.

I was referred to Physio for help with hands and feet. I also had special insoles placed in my trainers as it was so painful to walk at times.

In my case the mouth opening reduced & I had wrinkles appear above my lips similar to a person who'd smoked for a long time, it's one of the signs of the disease. I have never smoked.

I also felt that my teeth didn't seem to fit my mouth anymore. It's part of the restriction process.

You will feel at times you're going mad as there are so many weird things happening.

The numbing can be apparent in many parts of the body, mainly hands, legs and feet.

I hope this helps as you're on a steep learning curve at the moment. Xx