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What’s going on?

Hello everyone, I just wanted to share with you my journey so far. My symptoms started over three years ago, with debilitating migraine and an episode of optic neuritis. I currently see a neurologist for my migraines and due to the damage in my optic nerve, I am high risk for glaucoma; so I see a glaucoma specialist as well. Some of my symptoms so far are, numbness and tingling in my right arm, occasionally in the right side of my face and mouth, that comes and goes. I’ve also had twitching in my right eye that lasts weeks at a time. I have had severe itching in both inner arms, that lasted a good month or so. I have had two MRI’s done. One was three years ago after I was diagnosed with migraines and it showed small lesions particular to migraine sufferers. I recently had another one done due to my recent symptoms and will be seeing my Neuro to review results in the next week. I have heard them mention MS but no diagnosis yet. I just know something is not right here. Any insight will he helpful.

Hello

It’s difficult to know how to answer you really. It sounds like you are a good distance down the road towards being diagnosed with MS, or having it ruled out. Maybe having something else diagnosed.

All I can suggest really is to take someone else with you to your appointment next week. It’s so easy to sit in a neurologists room, completely follow the conversation, then leave and immediately forget what was said.

The biggest problem with MS is that your symptoms alone won’t dictate a diagnosis. There are so many MS symptoms that are shared with other diagnoses. The neurologist has to have MRI evidence, together with a physical examination and a complete history before making a diagnosis of MS or ruling it out.

Best of luck for next week, come back and tell us the result.

Sue

Thank you Sue! I appreciate you taking the time to respond. This has just been a long and exhausting journey with no answers thus far. Some days I just wish I was diagnosed already so that I can move forward. I will update after my appt.

Hello everyone, I hope all is going as well as it can for you all.

I’m reaching out for someone to talk to who may understand my confusion.

This is an somewhat ironic story.

I have had tinnitus for as long as I can remember. In the last 2-3 years it has become unbearable and my hearing has deteriorated so I went to my GP for hearing aids, he sent me to an audiologist, who sent me for an MRI scan “just in case”. The MRI scan showed a small lesion in my frontal cortex, back to my GP, who dug deeper. He asked me to list all and any symptoms, I laughed, “I’m getting old” I said “I could give you a list as long as my arm, but that’s normal”. He insisted, so I listed:

exhaustion, joint pains, depression & anxiety, headaches, dizzy spells, forgetfulness, weakness in my arms, hot flushes, deteriorating hearing and eyesight. I felt like a hypochondriac.

I had written off all these symptoms as ‘getting older’. Everyone has that problem, no point complaining about it. Well my GP disagreed , especially as my Brother has MS (diagnosed when he was in his 40s) and my Daughter was diagnosed 2 years ago aged 22, so I was sent to a Neurologist.

All this came as somewhat of a surprise as I thought my health was pretty good for my age and lifestyle (I am 51 work as a first aid trainer and pretty much a couch potato in my spare time).

The Neurologist took a look at my MRI and said it was likely I was right, just my age basically because MS strikes when you are younger and I would have had symptoms much sooner. “Just age related and very common” he said.

I left and carried on ‘getting old’. That was about 18 months ago. Since then I have had 2 major mental breakdowns and all symptoms have got worse (my tinnitus now has an added squeaking sound, like I have polystyrene blocks rubbing against each other in my ear, very annoying) I also suffer repeated chest pains, that twice have resulted in ambulance calls to rule out heart attacks (all clear, but I knew it wasn’t my heart, just a gut feeling, I suspect a pulled muscle).

Since my Daughter was diagnosed I have tried to watch out for news on MS and treatments, recently I have read it IS possible for MS to strike in later life, now I am wondering if I should return to my GP for a second opinion.

The more I read, the more I wonder, or am I paranoid?

Oh blimey, you are really over stressing the ‘getting old’ thing.

You’re a bit younger than me and there is no way I am classing myself as getting old. Getting older, yes, but not old!!

The neurologist you saw was, I believe, talking nonsense about your age. MS is often, possibly even usually, diagnosed when someone is aged in their 30s or 40s. But people are often diagnosed as teenagers, even occasionally children, and most certainly when they are older than you are now. So your age alone is/was no reason to strike MS from a diagnosis.

But he did look at the MRI, and presumably also took a history from you as well as (I hope) a physical examination. That is what would have ruled MS out.

If no physical examination was carried out, and no MRI of any part of your spine was done, then yes, a second opinion wouldn’t be a bad idea. We know that there is a genetic link involved in MS, not that it’s an inherited disease, just that it’s one of the many factors that when accumulated, can cause MS. Having a brother and a daughter with MS (diagnosed at very different ages - didn’t that make you think the neurologist was exaggerating a tad about age?) makes you a little more likely to have MS than the general population. And the symptoms you have experienced could relate to a diagnosis.

This does not mean I think it’s especially likely that you have MS, just that I think it wouldn’t be a bad idea, and it would surely ease your mind, to get another expert opinion.

And by the way, I am not at all surprised you have had mental problems. Your tinnitus sounds utterly dreadful, and even without any other problems, sufficient to drive a person completely batty.

Best of luck.

Sue

Had my follow up appointment to discuss my brain MRI results and looks like the lesions I have are nonspecific and again only related to my migraines. I mentioned that my numbness in my right hand and my mouth has been pretty persistent. My nuerologist seemed to think the numbness in my hand was due to carpal tunnel, since I work on a computer all day. Well he did a nerve test to confirm wether or not I have carpal tunnel. The test proved that I do not have carpal tunnel, so now has requested another MRI but this time of my spine to see if I have any possible lesions there. About a week ago I did have a sharp pain in my neck that felt as if someone was suffocating me, that lasted about three hours. It was pretty horrible. I don’t know what to expect anymore but I am certainly happy that more test are being ran, in order to figure out what is going on. I failed to mention before that I am a 31 year old female, if that helps any.