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Possibly MS?

Hi there!
I'm here on behalf of my hubby and I'm sorry that this will be a little long winded! He has been having a number of symptoms of MS, which I'll list below, for the past 2 years (possibly longer) and he's only getting worse. His symptoms don't really ever go away, they hang around and get worse.
So he's always had headaches with at least one a fortnight (since I met him ten years ago)
He used to regularly get severe migraine with aura, aphasia and numbness - these aren't so regular anymore thankfully.
He is always achy and has pain in his neck or back most of the time.
He needs to maintain at least 3 workouts per week otherwise the aches get worse and he gets stiff through his whole body.
He goes through stages of being super tired and fatiuged for days at a time and then will be fine for weeks or months.
He went to the optometrist a year ago with vision issues in one eye and numbness in his face around his eye that came and went. Before the optometrist even examined him he asked if he had any tingling or numbness in his fingers or toes to which my husband said yes. The optom said he didn't want to be the bearer of bad news but said he saw this often in patients that went on to be diagnosed with MS.
So off to the dr hubby went. He didn't even suggest it could be ms. The Dr put him on a low histamine diet and ordered a CT scan. CT came back clear (though I've read lesions don't often show up on a CT) and the low histamine diet has done nothing (we've also tried a diet of low preservatives)
Since then the numb sensation around his eye has spread to that side of his head and further around his eye and its nearly always present.
The tingling in his fingers and toes has turned to a numbness that has spread all through his hands and up his forearms and up his legs from time to time as well.
And very recently he has had pain in his lower abdomen and nausea (he describes it as if "someone has kicked him in the boys" even though no one has) which has also resulted in the same numb sensation "down south" as well as some erectile dysfunction.

I'm just wondering if anyone has had similar symptoms to these - particularly the last one. I think he'll go back to the Dr and get the MRI but he's just such a "she'll be right" kind of guy despite the suffering I'm witnessing him go through! He has just accepted that this is life for him now. Like everyone I suppose, we just want to know what's going on. I think we'd both be somewhat relieved if he got an MS diagnosis as it would provide an answer to all of the things he's enduring (as well as knowing its not a dozen individual health issues). Plus that way we could learn to manage it and look ahead and prepare for the future (we have 3 small children).
I'd love to hear your thoughts. thanks for bearing with me! 😀

Georgie

  1. Hi . It sounds like this has been at least as stressful for you as it has been for your husband. I am glad you found your way here. You will find lots of great resources and plenty of support in this community. Have he considered getting a second opinion from another doctor, especially since his symptoms are worsening? The idea of all that testing can be frightening and mentally exhausting for some people. Do you think he might feel that way? If he does have MS, there are medications that can slow the progression and reduce inflammation to help him feel and function better. It might be hard for him to comprehend right now that a diagnosis, if it is accurate, can eventually help him improve. For many people, visual symptoms like you describe are what trigger an MS evaluation. Add numbness and tingling to that and most doctors will at least order an MRI. MS lesions can be found on the brain, the spine and/or the optic nerve. Not only are CT scans not reliable for detecting MS lesions, but they are also not helpful if they are limited to the brain. Here is an article about the diagnostic process for MS: https://multiplesclerosis.net/diagnosis. Here is another article about health conditions that can mimic MS and should be ruled out: https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. I hope you can convince him to return to his doctor and request a referral to a neurologist or to find a new doctor. Keep us posted if you are comfortable doing so. Thinking of you. - Lori (Team Member)

    1. Hi Georgie I wondered how things had developed? symptoms? diagnosis?

      all best wishes

      1. Hi so things aren't getting any better for him but slowly worsening. He's about to see a new Dr on Wednesday next week as his old gp just kept stuffing him around and just needs to retire to be honest haha. I'm hoping this new Dr won't beat around the bush and orders an MRI immediately. I'm pushing my husband to push for it! We're both recovering from covid at the moment and his (ms?) symptoms are worse. He faired the virus itself pretty well but he's nearly completely numb in one leg, the vision has half gone in one of his eyes, his hands feel awful. I'm sure it will all settle down somewhat once he's over covid. Since my initial post he's also been experiencing bouts of vertigo and dizziness and cognitive issues occasionally. I've honestly got no idea how quick or slow ms progresses, and I'm sure it's different in each individual, but I have this awful feeling that his is moving quick considering his first symptom was only 2 and a half years ago. I will let you know how his appointment goes!

        1. , I responded to John below, but I wanted to respond to you as well. I am so sorry your husband's condition is worsening. I know it's exhausting, but I am glad you both are still pushing for answers and treatment. Don't give up! I'm also sorry you both had covid. Ugh. MS can progress at all different speeds, depending on the type, so an MRI could really help you guys get some answers to your questions. I really hope your appointment next week is a fruitful one and don't hesitate to push for that MRI. MRIs can be expensive, but MSAA does have an MRI fund -- https://mymsaa.org/msaa-help/mri/. You may want to check to see if this is something your husband would qualify for.


          Good luck and please keep us posted on how that appointment goes, if you feel comfortable doing so.


          Best, Erin, MultipleSclerosis.net Team Member.

      2. best wishes!


        MRI seems the only way to get a diagnosis but are expensive if you self-fund...

        1. , you're right. MRIs can be very expensive to pay for out-of-pocket. However, is the US, the MSAA does have an MRI fund, which may help -- https://mymsaa.org/msaa-help/mri/. It may be worth looking into, . Gentle Hugs, Georgie. I know this journey can be incredibly difficult.


          Best, Erin, MultipleSclerosis.net Team Member.

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