any advice please

[MNDConnect]

Dear TAPG1,

Thank you for updating us regarding your appointment with your psychiatrist.

Hopefully, once your medication starts to work you will be able to look at your symptoms with more clarity.

Those new symptoms you have mentioned to your psychiatrist, would not happen overnight and certainly not happen at the same time.

It is to be hoped that once you have seen the MND Specialist you will be reassured your symptoms are not those of Motor Neurone Disease.

For your mental health I hope you can find peace of mind very soon.

With kindest regards
Jacqui
Senior MND Connect Adviser

[TAPG1]

Thank you Ellie and MND Connect for your replies and kindness. I'm not embarrassed about admitting l have anxiety or that l needed medication for it. Ellie talking to you through mgs gave me the courage l needed and thank you so much. Your better than any GP or neurologist. I know lm not going to feel better overnight it will take 6 to 8weeks but today is day 1 and l did it not just for me but for my two little children. MND Connect lve had the symptoms since July on and off that's what's scaring me but l will deal with it if l have to. Nobody can tell me what's causing the nausea and sometimes sweating! I know that's not a symptom. I have a wedding today and lm so nervous about having to talk or if the twitching is noticed...hopefully l'll get an apt next week or the following and l'll let ye know how it goes xx

[Ellie]

No, TAPG1, I've just developed a different perspective on life, having lived this long with ALS/MND !!

[TAPG1]

Ellie your amazing x

[TAPG1]

Can someone if you don't mind explain to me about weight loss and what causes it with mnd...does this happen in the begining even before someone might be diagnosed and would it happen with bulbar onset? Does anyone think after 5mths you should be showing signs of weakness or does that happen with bulbar onset?

[MNDConnect]

Hi TAPG1

We did discuss weight loss and MND at length recently over the phone. Weight loss in MND can be caused by someone not getting enough nutrition due to swallowing problems or through the loss of muscle mass. When we discussed this, you advised me that you haven't been eating due to your anxiety and worries and we discussed how this would cause weight loss.

If someone had symptoms of MND for 5 months, it is most likely that their symptoms would be far more obvious and show up on a clinical examination. This would be especially true of a bulbar onset of MND.

I am sorry that is causing you so much concern and I really do wish that I could say something that would make these concerns go away. Please do know that your symptoms, their progression and the way in which you describe them would not suggest MND. Please don't let MND take over and destroy your life when there is nothing to suggest that you have it.

Best Wishes

Rachel

[TAPG1]

MND Connect Rachel, Yes we did discuss weight loss before and l wasn't really eating due to the worries but am eating, breakfast, dinner and tea and still loosing which is not right. I'm feeling it's muscle mass lve lost! I was never a thin person always struggled with weight so that's my concern, arms, legs whole body is smaller. This might be a silly question to ask but can your digestive system be affected? You also say my symptoms dont represent MND well lm afraid l don't agree with you Rachel when a lot of them point to it. You say symptoms would be more obvious and show up on a clinical examination especially of a bulbar onset, what do you mean by that? The only thing l can say is that l don't have a problem swallowing so the weight loss is not down to that. Is it not true that everyone's symptoms present differently! My speech is different. I feel my tongue gets caught between my teeth sometimes and the sensation in my lips and chin...THIS IS NOT NORMAL NOR IS TWITCHING.

[anxious1]

Tapg1. I know you hate people blaming this on your angst but beleive me, two weeks ago at my work I was suicidal with my anxiety about mnd. My twitching was all over the place. With the help of a good friend who convinced me to remain at work as I was ready to go home, she spoke to me and helped me. I started taking magnesium and my twitching stopped but mainly my anxiety reduced. I honestly beleive you are a carbon copy of my angst. Looking back with a more clear head I was being really irrational. From the research I did, MND would not manifest in multiple locations and as quick as you are experiencing. You have to try and reduce your angst. The anti depressants take a while to sink in. Can you not get some 5mg diazepam from your doc, maybe 14 short term. I guarantee they will reduce your angst which in turn will enable your body to readjust to rest, sleep better, become less tired and stop obsessing. I am talking from experience as I was the exact same. X

[TAPG1]

Anxious1 thank you for your reply and lm delighted your feeling better and that your twitching has stopped. Unfortunately l just don't have the twitching l also have the rippling under my skin.

[TAPG1]

I'm sorry for posting again but l need to ask these questions and ye all know best about this disease, it's symptoms and how it presents. I knew ye are not GP's or neurologists but how ye explain things realky helps especially Ellie and Terry (l hope your feeling better Terry). Do any of ye think lve anything to worry about in-relation to my symptoms and how they are presenting? I know ye can't say yes or no and everyone presents differently. Some people experience pain but l thought pain wasn't a symptom? My left side of my neck, shoulder and arm are sore the last few days but lm putting it down to the way lm sleeping because lm so anxious...lm terrified of having to go back to the neurologist also...I can't explain either what lm experiencing in the soles of my feet mostly everything on the left side.. Today l feel that l can't breath and lm putting it down to the anxiety...lm not me and haven't being me for a few months now. Has anyone experienced anxiety as a symptom of their MND? The volume of voice has changed as my little girl keeps saying "what mam" this is not right...lm terrified these are bulbar symptoms. Has anyone any advice! I hope all of ye wonderful and amazing people are having a lovely Sunday x

[TAPG1]

I wasn't going to post this but lm currently in hospital and have been told this is not all anxiety so at least that's one good thing! I knew deep down it wasn't but to be told by professional people means so much. I'm waiting on tests but l know deep down what lm going to be told. I will let ye know if ye want!

[MNDConnect]

Dear Tapg1,
I was so sorry to hear that you are in hospital. I am really hoping you get the care and support you need.
Best wishes
Ruth

[anxious1]

Hope everything goes ok TAPG1. Please keep us informed of how you get on and use this time to rest up which you definitely need.

Best wishes

x

[TAPG1]

Anxious1, Thank you and l will keep you informed. You have being so nice to me over the last few weeks and l really appreciate that. Xx

[Lynne K]

About hospital TapG1, on a positive note at least you are in a good place to do plenty of tests to get to the bottom of your troubles. I hope that they are treating you well and that you get a chance to rest while you are in there. I'm going to watch for your updates. Lynne