Last reply 5 months ago
Hugs hurt, not diagnosed and scared xx

Hi I feel like I’ve been tired for ever, brain fog has been a real problem and now I’m having hugs on a regular basis. I’m on the waiting list to see a neurolist because I’ve been tested for everything else. (I have an underactive thyroid so have had medication monitored etc, loads of blood tests for all sorts including perniticious anemia, coeliac disease etc and nothing has shown up). I’ve mention to my doctor that I have a cousin with ms a few times and was concerned but this was ignored until I started getting these hugs (ridiculous name because they are not nice and I’ve always liked hugs).
They seem to get worse when I’m in the car but they can just randomly start out of no where.
Does anyone else get them and any ideas what triggers it and what helps ???

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vixen
5 months ago

Hello @hugshurt, sorry you’re experiencing all these symptoms. As I’m sure you know,there are various conditions that these could relate to, MS is but one of them. How long have you been experiencing brain fog and hugs? At this stage, I would push for an early appointment if you can do that. Most common would be to get a referral for an MRI, have you had one yet? I hate to say it, but some people, myself included, opt to get initial appointment and MRI privately. By the time my NHS initial neuro appointment came through I was able to go with a copy of my MRI CD in hand which sped things up a bit. Good luck and let us know how you get on….


hugshurt
5 months ago

Hi vixen thanks for your reply I’ve not felt completely ‘normal’ for about 9 years but put it down to my thyroid, busy job, stress, children etc but then in the summer of 2016 I paid to see an endocrinologist because I wasn’t getting any where with my gp and had such bad fatigue I felt I was only living half a life. I then had lots of tests to see if it was caused by my thyroid and then the net was widened and I began to think I’d never feel better. Then all of a sudden I felt better again but hadn’t changed medication or anything, but in the last few months I’ve been feeling worse again! My endocrinologist seemed to be getting fed up with me and I went back to my lovely gp who was more sympathetic and changed me onto duluxotine and my brain fog got better but I was still tired. On a check up on how the new medicine was going I mentioned the tightness around my chest and all of a sudden i was having extra appointments and a neurology appointment was suggested. My gp has got me on a cancellation list to hurry up my appointment which isn’t until June if I don’t get a cancellation, and is trying to get me an MRI before I see anyone ( I don’t think he wants to make me pay for a private MRI if he can push things along as I’ve already paid privately to see the endocrinologist early). The hug started about 4 weeks ago and seemed worse while we had all the snow, when I went out it seemed to set it off, now going in the car starts it off. I’m seeing the doctor again tomorrow but really just want to know whether it is ms or not. Living not knowing what it is is awful, and I’d like to,stay up as late as my children and not go off to bed exhausted before them. People are so dismissive of my tiredness I want a diagnosis so I have a reason for being so tired X oh dear that was a longer reply than I intended and I could carry on but I won’t x


vixen
5 months ago

Hi @ hugshurt, it’s the not-knowing that’s the killer. I know. Great that your GP is ahead of the game in securing an MRI too. Further down the line, if MS is suspected you may need a lumbar puncture, but that’s a maybe. I’ve only experienced having a hug around my leg for nearly two years, which is bearable. If you type ‘MS hug’ into the search box top left there my be some other posts, as I know it’s a common the,e on this website. Take care of yourself, don’t feel guilty about needing rest. As with many conditions, stress can play a major factor in making things difficult. For now, you’ve done all you can do so focus on trying to maximise quality until there are some answers for you. All the best 🙂


stumbler
5 months ago

Hi @hugshurt and welcome.

I see @vixen has been looking after you. I saw the word “stress” as I was reading your post. Stress is a major antagoniser of neurological conditions as is best avoided.

But, the “MS Hug” is a common symptom of MS. There’s more details here :-

https://www.mstrust.org.uk/a-z/ms-hug

Your story is a common one of unexplained medical issues. Hopefully, you will get answers soon, so just try and relax until then. You can do no more.


hugshurt
5 months ago

Thanks for your replies X hopefully I won’t have to wait to much longer before I know what’s going on.

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