auto-immune disease in family

Hello :slight_smile:

My name is Amy and I’m 37, I don’t have a diagnosis of MS but I did have epilepsy as a child and started having seizures again (but complex partial seizures rather then tonic clonic ones) in 2015, I also have chronic migraine and I’m on medication for both. Last year I started having twitches and muscle spasms in arms and legs, which didn’t happen that often to start with I told my neurologist and he made a note of them).

These past couple of months these have increased, a lot to the point I am having it happen multiple times a day, it is usually my arms of legs that will jerk, but sometimes my shoulders and my back seizes up (painfully) sometimes when I’m walking. Within these last two months I have also started having new symptoms which are;

My hands shaking, a lot (to the point my husband said that it looked like I was swearing at him lol) this can go on for half an hour. It is one at a time and weirdly enough if I move my opposite hand it stops, then I stop moving my other hand and it starts again.

I can’t feel around my face and I can’t feel my finger tips or my toes (I actually dipped my finger into hot milk to test this… yes I’m nuts lol but I didn’t feel anything). I have tingling going across my face in a line which goes from my ear, across my nose to the other ear. Sometimes both of my hands feel like I’ve been sitting on them, numb/tingles and cold.

I am really really tired, I wake up really tired and it gets worse throughout the day and when the tiredness gets worse, everything else gets worse too.

I keep choking, on food, it feels like food gets stuck but sometimes I randomly start choking when I’m not eating or drinking anything (this has gone on for a few years but I’ve only recently started thinking it may be connected) and I also wake up choking during the night.

I have vertigo, usually in the morning and dizziness throughout the day.

These symptoms are all very different from the ones I have when I have a seizure,which feels like deja vue and it feels like I’m falling but once the seizure finishes I feel fine, but these other symptoms as well as being entirely different are constant.

I have spoken to my GP and she said it is neurological and she has doubled my medication and told me to contact her again in a month but sooner if it gets worse and if it doesn’t stop she’ll refer me back to the neurologist for tests (she didn’t say what tests). It hasn’t stopped even with the increase of medication (I’m leaving it a bit longer to give the medication time).

I know its impossible for people to say on a forum if they think it is MS and I’m would ask that, but what I haven’t mentioned to my Dr is that my mum has recently being diagnosed with auto-immune disease, not MS and her symptoms are very different from mine but would this make it more likely for it to be something like MS? I didn’t mention incase she thought I was being a hypochondriac saying I thought I had MS because my mum has an auto-immune disease but if there could be a link I’ll mention it to her when I next call her.

Hi, oo `eck! This is a big ask. So much going on that I really think you should see your GP again and let her refer you to the neuro.

With you having migraines and seizures, I dont wish to lead down another path ie MS just by reading your post.

I hope you get some deecent answers.

Take care chick.

Boudsx

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Thankyou :slight_smile: she has said she’ll refer me back to neuro if it doesn’t go in a month or to phone back if it gets worse, it hasn’t got worse its just the same, I think I’ll leave it until then because then I know I’ve definitly given more than enough time for the medication to work

Yes, you have. Let us know how you go on please.

Boudsx

Hi Amy

you asked if any of us had auto-immune diseases.

I didn’t think any family members had any.

then i remembered my sister had a bad case of psoriasis at 16 yrs. It cleared up completely and so I thought i was the only one with Auto-Immune nonsense.

about 4 years later we visited family (Grandma, 2 Aunts, 2 Uncles and 2 cousins) and it turned out that Auto Immune is rife in my family.

Sorry if all this is irrelevant to your post.

I wish you all the best for your appointment with GP and possibly with Neuro.

Meanwhile look after yourself.

avoid stress because in my experience it just makes all symptoms worse.

get lots of rest.

Take up any offers of help.

Carole x

Hi AEvans ,

Just read your post , I definitely agree there’s something neurological happening here , specifically what we are not qualified to say. Could these additional symptoms happen due to you having epilepsy?? , I hope these other weird symptoms ease for you . As for your query on autoimmune disease , yes It’s quite common for autoimmune disease to run in families , I have MS , and my mum has Rheumatoid Arthritis. I have a few friends who have numerous family members with autoimmune disease, so yes it’s not uncommon. good luck with any further tests and medical appointments. Take care and try not to stress too much , it’s only going to make you feel worse.

Hi

I have an existing autoimmune condition also migraine and also just been diagnosed with Epilepsy (Simple Partials). This has been going on for 4 years, and misdiagnosed as atypical migraine until recent neuro appt for MS symptoms and he diagnosed it then… I had said i thought i had it years ago, they said not. Hey ho. So currently not driving etc and no intent to take medicaiton at this point (maybe 8 x in 4years?). Still waiting for ACTUAL assesment of the reason I was referred which has nothign to do with Epilepsy.

However from what i know re Epilepsy when seizure is done, its done? Apart from some post ictal stuff which am sure you are aware of, it will resolve. Therefore not sure what you can account to Epilepsy though . I get twitches too, and have started taking magnesium supplements which i know apparently also help migraine

I am in the only person in my family with an autoimmune condition however. YOur symptoms definitely warrant a referal back to Neuro. And i know you will have considered if medication is to account for any of these side effects if you have been on them for awhile