Hi all this post is not to scare anyone ... - My MSAA Community

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Hi all this post is not to scare anyone ❤️🙏 I know my mums ms was a bad case

Hi all

I wonder if you can help me at all I seem to keep drawing a blank.

This all started in September last year 2 months after my mother passed (47) from ms.

My eye started to behave weird pain on moments blurry went to opticians and he said rrpd ( I think basically my pupil was not contacting properly )asked if there was any ms or neurological disease in the family ( panic) I was sent to morfields eye hospital and they could find nothing.

My muscles started to play up twitching jolting I had headaches and eye pain my face swells one side also.

No one would take me seriously because my mum had just died.

In the end I paid for a mri of the brain and found white matter lesions and diagnosis of ms.

Went to a ms specialist who then disagreed!! ( fantastic ) and said maybe lupus .. but all or sarcoidosis all bloods were negative ana extensive blood work lumber punter negative eveocs eye test spot on . Pet scan showed inflamed lymph nodes in my neck and ovaries swelling. I have a very dry swollen tongue and dry eyes temp issues and flushing of the face I often feel ill like flu is coming but it doesn’t

Brisk reflexes

I then went to a lupus specialist in London lupus center he suggested aps which my Nan has .. but my results are negative. He did say he thought I was hyper mobile.

My neurologist now think it’s physio somatic from watching my mum pass away and the Lesions are from ‘silent migraines ‘

My eye sight isn’t worse but deformed more blurry so I went for another eye test and within 4 months my eye muscles have deteriorated and I have been given prisms.

My neck also feels weak ie when I wash my hair in the bath I really have to strain to pull my neck up .. my swallow feels weird like I have something in my throat and may face has so much pressure on it.

Really I can go through most autoimmune and pick something from all criteria but nothing that confirms anything.

I’m a little lost please can anyone give me some suggestions

I do get pins and needles hot ones two in my neck and shoulder and scalp.

I have bone marrow changes in my hips also and I hAve low vit d and I have 3monthly injections of b12

I also want to add that I actually don’t think it’s ms and I’m not worried if it is I’m only worried that I don’t get the right treatment

My mums ms was a bad case but that was her fight and she done me proud but this is my fight

Thanks for reading

Jade.

Age 29 xx

27 Replies
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Have they done a spinal tap? Sorry to hear that you’re feeling so bad 😖. Prayers are with you 👍🙏😉. Ken 🐾🐾

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Thanks ken yes I have had lp and eye test thing bloods.

My white matter changes are in the wrong place apparently for ms according to my ms specialist and my spine is clear so we are watching waiting and seeing what happens. Xx

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Firstly I am so sorry for the loss of your mum, you are still young at 29 to loose a parent. I am not a doctor and no one is on this forum, but if I was you I would try and see ms specialist. The stress you incurred through loosing your mum was maybe enough to instigate the problems you are having. Do you live in London U.K.? I live in Yorkshire so if I can help in anyway I will. Blessings Jimeka 🦋

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Hi yes I was diagnosed by a run of the mill neurologist and then searched for my ms specialist who believes it isn’t ms as the lesson are not typical of ms his name is doctor Omar Malik in charring cross hospital

He told me I had a relapsing condition 100% and that it looked like lupus.

He would have me on medication by Christmas.

Since then we have been through ms lupus sarcoidosis aps all negative blood wise.

Now he believes I have silent migraines and I’m fine however I don’t feel fine.

He said it could be ms just less likely as lp was negative 1 in 10000 chance.

Since my mum died something kicked in my body Seems to have turned on its self 😅

Xx

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Dr Jeremy Chataway, National Hospital for Neurology and Neurosurgery, London.

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This man comes highly recommended if you want a second opinion, apparently he listens and he cares.

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Thank-you I will have a look into it xx

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First of all I want to send you a big hug from "across the pond" . You are only 2 years older than my son and my heart breaks that you lost your mom. Such a dam shame, so I am sending another hug.

I do know that the medical profession will figure out what is going on with you. In the meantime, please look after yourself in this stressful time. You've been through so much.

All my love,

Sue

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Thank you 😊 I hope so I can deal with anything I but if I don’t know what it is I can’t.

My neurologist has done a uturn and isn’t being very clear my first brain scan showed multiple scarring and some white patches

Second scan shows only scaring

No active lesions

I do have another one in June so see if there are changes.

I loved my mum so very much I have a lot of knowledge about ms tbh I don’t think it is ms but I do think it’s something and when you get no where with Doctors’s and you have just witnessed the worst of it it’s a scary place to be xx

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So hope u can get some answers and I’m sorry about the loss of your mum xxxxxxxxx ❤️

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Thanks so much ❤️

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You are doing all the right things. No two people we the same. Specialists should see from brain MRI, can you get another opinion? I wish you well and trust your judgement that you don't want to have treatment when you don't know for sure. I struggled with those who say take this med or physical therapy. Genetic and environmental play role. MS is still searching and so must we. Peace

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I am looking to get a 3rd opinion my first neuro said ms my ms specialist said no but stil can be sure what and really I need to see another one that will put pen to paper xx

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My sincere condolences on the loss of your Mom. You have been through a lot. Has anyone ruled out Sjogren Syndrome? Some of your symptoms overlap so maybe testing by a rheumatologist would help you. I hope you get a definitive answer soon. Don't give up!

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Hi thanks yes I have but I haven’t had the lip biopsy the bloods were negative 👎 they don’t seem that concerned I do have a dry mouth and swollen tongue dry eyes too I am booked in too see dr Cruz end of May xx

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i was dg. with ms at 23 and thinking back the year before that was traumatic. i was graduating college, my father was dying and i adored him and i graduated, got a job, moved and a few months later i was so sick. i don't know what you do or don't have but have heard many stories of people going through so much and then being dg. with ms or whatever. it's like i was holding it all together and then ms came out of nowhere and i was dg. pretty quickly. wishing you the best.

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Yes any autoimmune can be kicked off by emotional stress my neuro told me this as I couldn’t believe how I changed literally over night xx

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ANY kind of stress can kick things into high gear. You are going through such a rough patch. I am so sorry for everything. Hopefully you will get answers so at least this part of your life will calm down.

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That’s true any kind can x

Thanks I hope so hopefully what ever it is can be controlled xx

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Yes sorry about your mom. Prayers for your family

Lots of stress , but be persistant.

Peace

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Thanks xxx

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I’m so sorry. A lot of people with MS have symptoms or relapses within 6 weeks of a major life change or loss. I’m glad you might not have MS lesions, as it’s important to get the correct diagnosis and treatment. Yes you have a lot of bizarre things that tick a lot of boxes and many here know how fun limbo land is when you are waiting for diagnosis. 😞😵

When you say your neck is weak in the bath, are you upright in the shower or leaning over in the bath? How do your arms and face feel during this time?

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Thanks for your reply I mean like when I’m washing my hair it’s hard to hold me head up from laying down

I get a lot of discomfort in my neck and throat clearing it is hard then it goes and comes back xx

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Keep reporting your neck weakness and difficulty swallowing. Let them know if the symptoms get better with rest and then return when tired. Don’t eat when you’re tired, you might choke 😵 Dry shampoo works well at keeping hair clean for a few days. Maybe browse a forum for people with myasthenia gravis and see if anyone there has some helpful tips too.

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I’ve read about myasthenia graves doesn’t sound great iver tbh xx

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No, it’s not, but it’s an easy disease to test for with a medication that either works (bad news) or it doesn’t.

They usually lose function of muscular control starting with their eyes (the visual acuity is fine, but when tired double vision develops, or worse) and poor control of neck muscles. This is why I think finding advice from some of them could help you navigate your daily life while you wait in limbo land for a diagnosis and treatment.

Lots of love to you, I’m sorry you’re going through all of this on the heels of losing your mother 💜

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Thank you for your advise xxx

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