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Thick tongue - advise please

Hi I have been having a few problems for a few years , Briefly my symptoms are constant pins and needles Left arm , face and head ( like ants crawling Over me) some intermittent weakness left arm Intermittent left shoulder pain , occasional pins and Needles left leg . My most frustrating symptom is Brain fogg !!! This really gets me down as I was Previously very alert and switched on. My latest unexplained symptom Is what feels like a thickened tongue which also Has an interesting tingly feeling like space dust . I am having vit b12 injections for the tongue thickening. I was just wondering if anyone else has experienced This as a symptom. My MRI showed some leisions but did not fit McDonald’s criteria so I think I’m in the limbo Stage. Advice would be greatfully received. Thanks

I have the same thing with my tongue its swollen and get the popping candy feeling you’re talking about - think its the nerve from where the lesion is on my brain

Hi Karina Many thanks for the reply , it’s really helpfull and strangly reassuring to know that I’m not alone with this . I guess for me the more that I know that’s a real symptom the more determined I get to manage it. Many thanks

Are you on any medication? Nerve pain tablets can help - I used gabapentin previously

Hi I’ve been having vitb12 injections which Initially reduced the swollen tongue but Recently its returned with a more intense Poping sensation . I’ve also had some Muscle pain , memory loss and fatigue. I have not been diagnosed with ms and the Neurologist told me to come back when I could No longer function in work. I have a GP appt In July as things are getting worse and I’m Finding it impossible to do a full days work. I’m not sure if I need a positive diagnosis before I can be given any medication . Are there benefits to having a diagnosis? I appreciate the reply and advise . Many thanks

Sorry for the delay in replying. You don’t need a diagnosis for medication such as gabapentin - it’s administered for nerve pain symptoms etc. Mention everything to the gp and explain that your symptoms are getting worse and could they refer you to the neurologist again as you were told to go back if symptoms are worse. There’s lots of medications that can help treat symptoms without having a proper diagnosis. All a diagnosis is in some sense is a word - doesn’t change the symptoms - all it does is help getting on dmd’s (disease modifying drugs) if the McDonald criteria applies. So in short a diagnosis really shouldn’t make a difference to how they treat your pain/symptoms. What I would do is write down a list of your symptoms and take it to the gp and go through them - see what they think and see if they think its worth going back to the neurologist. Have you had any investigations yet, such as scans etc?

Thanks for the reply . Your advise is really Helpfull. I’ve had a MRI about 3 years ago Which showed some leisions but not consistent With ms and lp was normal . Although I think I’d only really had one event when I went for the MRI since then I’ve had another event which Affected my vision , the thick tongue and an increase Intensity of pins and needles , limb weakness and And joint pain . The big change is the thickened Tongue and leg symptoms In particular pins and Needles and assiciated pain under my foot. All my symptoms are On the left . I will speak to the GP and I will List my symptoms as you suggested. I do find That vitb12 helps for a few weeks after injection but It’s very short lived and also I find it makes Me realise how much a struggle day to day life is When the symptoms become evident again. I try to stay active in the hope that it will strengthen My muscles but I don’t know if this us the right thing To do as I then get really exhausted afterwards And feel pretty useless because I can to the day To day tasks . I’m determined to live my life though And I agree that treating or minimising the symptoms Is the most important thing . Thank you so much For answering my concerns I really appreciate it.

No problem - keep us posted on how you get on

Will do many thanks