Last reply 7 months ago
Tongue burning

Hello lovely people! Not been on here for a bit. I moved back to Germany after 30 years. Had my second round of lemtrada here in March and since then feel a bit lost. No MS nurses to speak of and you have to organise everything yourself (where I live anyway). Finally gett8ng some mri Scans but have been having an odd physical symptom for a few months now. Burning tongue and numbs lips, lump in the throat, tingling head and fingers and shortness of breath. That last one is prob Stress mind. My neuro doesn’t seem overly bothered. I should see my GP. My GP thinks it’s neurological. So, what then? I’d guess on vitamin issue (another neuro mentioned this) but can’t help thinking it’s the thyroid. Anyone else got issues with this? I feel a bit desperate.

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7 months ago

@bienenstich , are you still having your bloods and urine tested monthly? They should be looking at any Thyroid markers, to identify any problems.

The MRI results may possibly help, although do you have any previous scans for comparison?

7 months ago

Well, that is precisely the problem. Tests for thyroid have not been included but MRI scans are at least this month. Will see neuro again in Feb. And they have my old scans from the UK. You are not contacted at all here for tests and have to organise everything yourself, so easily fall off the radar.

Things are not that efficient in Germany believe it or not. Im getting in touch with my GP tomorrow to demand a test and ultra sound. At least the latter can be done easily at the practice.

7 months ago

Which part of Germany are you in? I might be able to give you some useful pointers. I’ve had things the tingling fingers and numb lips before. Also, I used to live in the UK too!

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