Last reply 1 year ago
What is wrong with me!

Hello All,

I have not been diagnosed with MS or any other autoimmune disease, but I am on my last ropes with my health / symptoms and want some answers. Not sure if anyone can help here, but it will be nice to have some feedback on your thoughts on my issues. I have a lot of health problems to begin with (18 year cancer survivor, plus a long list of other things), so I think that just exacerbates my diagnosis with my doctors. I will list below some of my issues and would like any feedback you may have:

Chronic dizziness – I have had that on and off for many years (with occasional vertigo). I did see an ENT specialist and he determined my left eye was “slower to move” than my right eye. I did have to go for visual therapy to get my brain and eyes to respond in sync. For the past 2 – 3 months dizziness is getting worse, now at a point that I am dizzy all the time and feel nauseated. I do fall a lot too.

Trigeminal Neuralgia (left eye) – I was diagnosed with this 2 – 3 years ago. Mainly have pain on left side of face, with occasion pain on right (atypical). I have been on 2 different meds and really do not like the side effects. Most of pain is in my left eye / forehead and in my teeth (left side). Painful to move my left eye sometimes. I recently decreased my meds for this because I wanted to see if I could go without, but it still flares up. Coincidently, all my health issues recently that have gotten worse correlate with decreasing of my neuralgia meds (Tripletal – or oxicarbemazepine). Was taking 300 mg – two pills in am and two pills in pm. Now on 150mg in am.

Cognitive issues – I have left work and on short term sick leave due to the issues I was having at work. Started new position and I could not handle the job. I normally am quite organized and do well, however about a year ago, I could not handle the job. I was disorganized, couldn’t remember things, could not focus, didn’t feel myself. My job suffered and I got very depressed. Had crying bouts a work almost everyday. I am normally not like that and it was very difficult for my to come to terms with and make the decision to leave. There were other issues as well (not a very understanding supervisor / manager, position had to many responsibilities and not enough time) and I would take my issues out on my coworkers – again not something I do. I also have issues with finding my words. I pause a lot to find the words and / or have words that come out that are jumbled up.

Visual issues – in my left eye it feels “cloudy”, like I can’t see because there is something in my visual field (not all the time). My left eye hurts on an off. I get occasional swelling around my left eye. My sister is my eye doc, so she looks after me quite well. I was tested for myasthenia gravis, and that came back negative. I will be going to see my sister later this week and she will be running some more in depth tests to see what is going on with my left eye.

Can’t sleep well

Numbness / tingling in fingers and arms. Recently just started in my left foot.

Overstimulation of nerves – I have a hard time explaining this and I feel like I am crazy when I do try to explain. Loud noises / bright or too much light makes my nerves jumpy. It is so annoying. Also when I move my eyes it bothers my nerves. I have no words to describe this, so I will leave it at that.

Incontinence – I have recently had issues with this. I have had children, and I do get the normal issues with sneezing, falling and incontinence (minor), but recently I will be just standing / sitting and have a minor accident.

I do get some muscle cramping in my feet. I just thought this was normal as my mom has this as well. Usually comes at night when I am sleeping. Such a joy….

I do get very itchy legs, sometimes to the point that I itch so bad I draw blood. There is not reason for the itchiness, just shows up. I have had this for years and just thought it was dry skin / etc., which could very well be, but happens all the time regardless of time of year.

Fatigue – I am tired ALL THE TIME. I have had every excuse in the book for this. You are a mother who works, you had cancer / chemo / radiation so it kinda sticks with you, you aren’t exercising so you are out of shape, when I was in shape I am working out too much, didn’t get enough sleep, you are stressed out, you suffer from major depression. Yes, I probably am tired because of all of the above, so perhaps it really isn’t worth mentioning.

I just want to know what is wrong with me. The past few months have been difficult and I feel like I am not getting better, but worse. I got for counselling and I feel that is helping me, but I feel that my body is falling apart. If anyone has any comments / advice / etc. it would be helpful. I am seeing a new neurologist in March for my Trigeminal Neuralgia, but perhaps I should mention all of the above as well.

Thanks for hearing my rant!

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1 year ago


This is probably not what you want / need to hear yet… From what you wrote you have health problems & are grasping at straws in the hope one will give you answers. Google Search is not always our friend.

Eighteen years after Cancer & medication; the odds are that something is occurring – but probably not MS. You have been working with medical professionals searching for answers; you have one in the family. Not much more you can do.

Except do everything possible to keep those close to you on your side. We all need support as we go through life. I wish you the best…

1 year ago

Hi @trinity1973 sorry to hear you are having such a tough time, sounds like you’ve been through a lot. Luckily though you have already secured a neurology appointment fairly soon so I’d say, yes definitely show/mention all the above there & hopefully you’ll be a step closer to getting some real answers fairly soon too 🙂

1 year ago

Hi @trinity1973 and welcome.

The only advice I can add to that above in to keep a symptom diary. Then you can create a short, concise summary which you can pass the the Neuro.

It’s not for us to try and diagnose you, so we need to leave that to the medical professionals.

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