Is it MS?

New diagnosis and before diagnosis
1

Hi,

I need someone to tell and give advise about all my wacky goings on…any help would be greatly appreciated ! Oh and i 38 year old female with 4 kids, married and basically healthy!

Ok here goes…I got a pain in right side of my neck (back of head round to underneath ear) on Monday 5th march in afternoon. Thought ok i must have hurt it but it was very painful burning feeling. Took some painkillers in eve and went to bed. Got up 6th march in morning and it was worse! made appt for dr’s and went at 12 noon. She said sounds like shingles…wait couple days see if blisters appear and if not come back and see me. Had chickenpox 3 times in life before so not that unusual to get shingles and as it was going round my kids school i guessed it was possibility ! By 4pm that same day i realised my hand and foot felt numb? was colder than rest of body and if i pinched the skin it was totally numb like i’d been to dentist! Thought it was strange but went to bed and ignored it. Woke up 7th march and was totally numb on entire left side of body…from chin to toes…everywhere was completely numb including my underneath (erm…personal bits). Admit was in slight state of panic by now and very upset that i couldn’t feel anything down there !

Rang GP and explained about numbness and said is this normal for shingles…she said NO get butt down here now and we see you! Got there and they ordered loads of blood tests and come back on 13th march for results.

Went back for reults…by now i am super clumsy, having alot of blonde moments and brain fog. Cant feel hot/cold AT ALL! totally weak in arma nd leg on that side and super tired ! She reviewed blood test results and ruled out usual suspects for symptoms. Thyroid…perfect, vit B12…fine, Calcuim…fine, blood count…good, no infection and nothing unusal in tests! so…ok then what now. She then phoned my local hospital and spoke to TIA unit…did physical exam whilst there and i had no babinsky reflex in left foot and dimished knee jerk reflex! kept asking if face was numb…said NO. Told me she wanted me to go to TIA unit in morning as it was urgent i be seen.

14th march arrived TIA unit to find out it was a stroke unit…now i really crapping my pants! Had MRI head and scan on arteries in neck…went back next day for MRI on neck as head one showed no stroke! All tests showed no stroke…did eeg and physical and agreed i had defined weakness on left side and was confused as to why. Dr in TIA unit said ok no stroke and i have no idea whats going on…he new results of blood tests and said go back to GP.

19th March…back to GP and explained what TIA unit said and explained new symptoms to him. Annoying buzz in right saide back of head…ants running around up and down left side of whole body, feel weak and shaking after bath or when doing housework…shaking worse in morning and random times throughout day, and when flex neck forward get major buzz all the way to heel of left foot! Clumsy and writing got worse, leg shaking when dip clutch in car, sharp pain in right eye…lasted 1 whole day ! and annoying twitch in right eyelid. Couldn’t orgasm at all (not surprising when numb i guess). Numbness improved slightly to mild numbness except in back, part left arm and thigh…they still totally numb otherwise slight improvement. Although hot/cold sensation still cant tell which is which…although cold seems to make my bones hurt and i eventually can work it out…dangerous with hot tho as have burnt myself by accident. Clumsiness same still bad and i forget simple things and seem to have slight hearing loss in right ear…hubby is getting annoyed and i dont blame him as i have dumped more than a few hot coffees in his lap!

GP then says he thinks i have MS and he referring me to neurologist…i said wouldn’t the stroke guy have seen that on MRI if it was, he said no he was only looking for clots/stroke evidence and wouldn’t be looking for anything else! Well i no expert but find it insulting that a TIA dr wouldn’t look for anything else, surely they intelligent enough to notice MS symptoms on an MRI ??

26th March…and got neuro appt for 13th june! Left side has now stopped with the ants and progressed to severe sunburn feeling…not pleasant at all! I also had an awful tight side on left, around middle like someone had grabbed the muscle from my neck on left and pulled…under my arm and my waist was so tight it felt like i had half a corset on too tight ! was awful…lasted the whole day…eventually got to sleep but i think i just passed out from lack of oxygen LOL!

Its now 15th may and i still have same symptoms nothing has improved and apart from pooing my pants on saturday…which was MORTIFYING! nothing different! I still shake on and off, i still clumsy and weak…still partially numb on left and am annoyed with it all. GP said he would have put me on betablockers but as i have asthma he cant…so no meds, no improvements…kinda loosing hope that it is something silly or curable. Its 10 weeks today since the onset and am wondering how much longer this will last…is it ever going to relapse…if its MS that is? Any ideas or suggestions as to what i can do to help myself now?

Thanks for listening to my winge…really appreciate it everyone ! xx

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Hello Leamills x You really have been though it eh!

It’s good you are being referred to a neurologist. I’m afraid that all you can do now is go with the flow. As for when all this will go away - well it’s anybodys guess! Everyone is different and you do seem to have had a whole bagful of symptoms at once. Hopefully it will ease for you soon xxjenxxx

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Hi Leamills,

My diagnosis of MS took 3 years of waiting with similar symptoms to yours as there is no specific tests for MS and becomes a case of ruling everything else out before they will diagnose. Also not everyone that has MS will show scarring on the MRI scan. I hope they can come to a diagnosis of what is wrong for you quicker than they did for me, unfortunately all you can do now is sit and wait.

Shona x

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thanks Shona and Kizzydane… at least i on the way to getting some answers, maybe…i hope so

Lea xx

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Hi Lea

Poor you. The journey to get a diagnosis is a long and difficult one for most of us - so hang in there. The MRi the stroke unit did - maybe used to look for MS but it does depend on the type and if contrast was used. Additionally if these doctors aren’t used to looking for signs of inflammation classic to MS they may be prone to missing them.

Your symptoms certainly could fit MS as well as other things - seeing the neuro is a good 1st step though. Prepare yourself for the appointment list your symptoms keeping a concise history of general health and previous problems you’ve had - neuro’s are limited with time so it’s important to keep on track.

People thinking you’ve had a stroke is extremely scary - my neuro initially thought I may have had a stroke but hadn’t. I had numbness all down my L (yes inclduing my privates too). Still no closer to an answer myslef at the moment and my initial symptoms started 7 months ago.

In terms of helping yourself - try not to over do it or stress (easier said than done). Eat healthy and continue a form of fitness you feel you’re able to manage. In terms of going for a bath I find a bath makes me significantly worse so I now try and stick to shorter showers where I can.

Hope you get some answers soon

Reemz

X

6

Hi Lea, and welcome

I’m with you on the MRI - if there were lesions on the brain scan, the radiologist should have picked them up even if he/she wasn’t specifically looking for them. It’s possible that they didn’t do the right type of scans, but I doubt very much that none of the scans were OK for detecting MS lesions. Saying that, your symptoms are very consistent with spinal lesions and I’m wondering if they did a neck scan that was good for MS lesions - you mention looking at the arteries - so it’s possible that they could have missed something in your neck, never mind they didn’t scan the rest of your spinal cord.

I’m sure the neuro will want to rescan you - hopefully it will be clear what’s going on then.

A couple of things you should know. If this is the first time that something like this has happened to you, there is a chance that it isn’t MS at all (e.g. it could be an infection) and, even if it is an MS-like attack, there is also a chance that it will never happen again - about 50% of people only have the one attack.

So hang in there!

Karen x

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Hi again,

My TIA appt didd include an MRI of my neck too but no contrast was used in either brain or neck MRI! I have never had anything like this before but i have had medical issues for 10 years, mostly to do with stomach problems. I had my gallbladder removed in 2009!

When i had my blood tests done my GP was also surprised that my white cell count was low (as i have excema its usually higher than the average person) so was my viral count…i find that unusual if i had a virus wouldn’t it be high?

I have been keeping a list and sort of diary of my symptoms and its been the same really…not much change.! I keep waiting to wake up and its all gone, as i hope its still a brain fart and nothing more ! LOL

Still will post again when seen neuro on 13th june and hopefully i may have some answers or at least more info on what next!

Take care all…and high five for all us limbolanders xx