Undiagnosed symptoms: Hello everyone... - My MSAA Community

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Undiagnosed symptoms

Brandy4043 profile image
14 Replies

Hello everyone

Please I need answers and help

I’m a 21year old female experiencing many symptoms for 2years now and the disease is still undiagnosed

I’m tired of going to the hospital and telling the doctors how I feel but they end up telling me that I have anxiety

Here are my symptoms-migraines,head tightness that I can’t even make tight braids anymore ,stabbing pains in my face especially around my jaw,pains in my right leg most especially at night while resting..these are my frequently occurring symptoms,then I sometimes have shaky body or hands ,pins and needles,fatigue (happens few times),hot flashes ,painful swollen lymph nodes on my neck which comes and go (the lymph nodes and hot flashes started after I got exposed to mono last year)

As of last two years my symptoms were minor ..but after I got exposed to glandular fever last year it worsened

I found out from my research that glandular fever has a possible connection to Ms

So please can this be Ms symptoms or it is not Ms related

Please I need answers because I’m gradually loosing myself

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Brandy4043 profile image
Brandy4043
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14 Replies
starlight5 profile image
starlight5

Sorry for your difficulties. How many Dr's have you seen? Have you had a referral to a neurologist, preferably one who deals with ms? My first neuro wrote me off too so don't give up or be afraid to ask for a 2nd or even 3rd opinion. Only you know how you are feeling and with your symptoms of course you have some anxiety! Keep a journal of symptoms and dates, it really helps you focus during appointments.

You didn't mention what testing you have had?

Brandy4043 profile image
Brandy4043 in reply to starlight5

I did many possibile test but nothing was found ..I even did brain scan as of last two years when it started but yet I was told I’m okay

goatgal profile image
goatgal

It sounds as if you are in the UK. Get a referral to a neurologist who has some MS expertise. Be insistent, and take your hospitalization documents with you when you get an appointment. We can't diagnose. We aren't doctors. That said, you need help and answers even if it takes a while. Keep us posted on your journey.

MsBoo profile image
MsBoo

Keep a journal of your symptoms. This can help the dr's that you see. See drs that are not just ER. Spell it all out in the journal.. what it is (feels like), how long it lasts, when it went away. That way a specialist, or a regular dr (GP) can evaluate your issues as a whole. Do not give the Journal to anyone, make copies of it..

That is the best advice I can give.. sorry no quick answers.. Just sage advice.

Wishing you good answers and better ones than you have gotten so far.

Keep on truckin..

MarkUpnorth profile image
MarkUpnorth

Agreed, a neurologist would help best. Try and find one who specializes in M.S., rather than one who simply knows of it. It may/may not be, but they will know what is needed.

ahrogers profile image
ahrogers

Unfortunately there are many things that can cause the same symptoms. As others recommended I advise a neurology consult. Was the brain scan a MRI or a CT scan? You need a MRI to evaluate possible MS. A lumbar puncture may help with diagnosis as well but is not always positive (if you have one, make sure they do blood work at same time as they have to look for abnormalities in the lumbar puncture fluid that is not in the blood too).Since those of us in this forum have MS we might have some of your same symptoms but that does not mean you have MS.

Best of luck in getting a diagnosis, or maybe more than one as your symptoms could be from more than one problem. For example, you could have migraines and trigeminal neuralgia or something else altogether. Getting diagnosed will hopefully lead to treatment to help!

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Sorry for all you are experiencing. You are so young, if you can definitely see a neurologist and maybe your ear nose and throat specialist. I certainly wish you the best and keep on coming back here. Others may have better suggestions. Research the HealthUnlocked and the MSAA websites for additional information and maybe some help. These websites have been a great source of information and help to me. Almost 6 years to the date now since I was diagnosed excuse me, woke up with total numbness on my whole right side, and my whole left side was numb by noon. But that was me and I have lotta doctors to check me out but it still took a while for a definite diagnosis. I’ll be thinking about you and throwing in a prayer too💓🙏🙏

Brandy4043 profile image
Brandy4043 in reply to CalfeeChick

Thank you 🙏🙏

152114randal profile image
152114randal

Because of your age I’m betting on MS. Please check for that and if diagnosed get on the MS drugs asap. Good luck.

Brandy4043 profile image
Brandy4043 in reply to 152114randal

Does it always start in this age ?

152114randal profile image
152114randal in reply to Brandy4043

No Brandy it strikes at all ages. My wife was in her fifties but had symptoms 10 years prior to diagnosis. Having said that MS does seem to strike young people more often then older folks.I know it’s very scary for you but I think if you see a neurologist at a good teaching hospital they will be able to determine what’s going on with you. By the way it’s been 22 years since my wife s diagnosis and she is still walking and hasn’t been plagued by by any of the extreme’s of MS that you might be thinking about. I wish you all the best.

Tazmanian profile image
Tazmanian

Sorry for your problems I am not a doctor but you should see a neurologist and get checked out

ekelks profile image
ekelks

Really wish we could help. You need to get an MRI of your brain with contrast, and have a neurologist who specializes in MS & a radiologist that neurologist trusts read your scans. Get copies of all previous brain imaging reports, all lab results, etc., and bring them to the new neurologist. Yes, there may be a connection between some of the illnesses you've been diagnosed with but you need to have, last I heard, at least two symptoms that meet the diagnostic criteria, plus probably certain things on the MRI, an MS specialist will know what to look for much better than me. You are so young, get someone you trust to go with you to the neurologist -- to help ask questions and take notes. Best, Arlene

1180Hope profile image
1180Hope

Have you been evaluated by a neurologist that specializes in MS? If not, GO Don't let your PCP or GP talk you out of it or put you off or tell you it's "just nerves". Obviously, you must get diagnosed. It may not be MS at all, but whatever it is, get it diagnosed. "Can't get it fixed if you don't know what's broken".

Pain in the jaw COULD be Trigeminal nerve pain. That pain and I are, unfortunately, old friends. Ask your MS specialist. There are several meds that are designed to _help prevent attacks, stop or reduce mild, or worse, pain. According to my investigations, this is not a symptom that every MS patient will encounter --and that's great -- but be sure to talk to your doctor about the symptom. It could be a symptom of something else entirely. Good Luck.

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