Awaiting consultant phone call, worries of a husband

Hello, I was last on this forum in 2018, when my wife had complaints of pins and needles in her feet which wouldn’t go away. She got an MRI which found VERY subtle inflammation on brain and spine (so subtle, the doctor almost missed it until a second doctor pointed it out). They called it CIS (clinically isolated syndrome). Since then, the wife had a scan in 2019 and 2020 with no further changes found, and living life fine (the odd moment of pins and needles but otherwise no huge complaints). Wheb she received these letters confirming no changes, they also arranged a date for an appointment with consultant at the time, just to catch up i guess. She had her MRI this year in late Feb. Time passed and no letter, so she chased consultant twice. Eventually, a letter came with date for telephone appointment with consultant (for mid Apr) but no mention of if they found something getting worse or not. Whilst she hasn’t had any major complaints (she did mention some more pins n needles before the scan which she reported to consultant) this lack of news of whether they’ve found anything is playing on her mind, so much so she’s taking it as the worst case scenario. MS will be a nightmare diagnosis for her, her mum had it whilst she was growing up, a child watching her mum suffer and deteriorate, I can’t begin to think how awful that must have been. In late 2019, my wife gave birth to a beautiful little girl. Despite covid, life has been great. But life throws hard balls at us, and it feels this hard ball will be bloody hard! If anyone has an idea of why it has taken so long for this telephone appointment, or why it hasn’t mentioned if they’ve found something or not, you’ll be helping a dad and husband who is still trying to figure the world out. Lots of love Bigbear

Hi bigbear. So from my experience I was diagnosed with RRMS only around a month ago. So I like your wife had pins and needles through the left side of my body including feet etc. I was in hospital when I had an mri ct scans & 2 lumbar punctures etc. So on my scan they found lesions or scar tissue however you want to call it :slight_smile: mine from what I remember weren’t faint as they are active atm still dealing with coordination problems and varies other symptoms that are very strange to describe! Then I was discharged around end of February due to covid everything has a delay and after numerous health professionals confirming I’m not dying ( I suffer with anxiety anyway) I tried to relax for the weeks that followed. It’s usually described as ‘limbo’. If it was anything life threatening the neurologist would have called your wife within a day or so as this was my massive concern even though the drs in hospital had mentioned to me personally it’s not you still worry and I understand that. Im presuming your wife please correct me if wrong ! Is waiting for a telephone consultation from the neurologist? If that’s the case I had mine around 2 weeks ago now and what I done was write everything down that I wanted to ask and also a timeline of when these weird symptoms started / easied etc. This is when he explained what my symptoms where. My main thing is it won’t stop your wife’s life. I’m due to get married next year ( covid only delayed it this year!) & we have talks about children in the future and this won’t stop us … just have to take a little more into consideration:) I then had a MS nurse call me earlier this week who then went through the neurologists medical advice with my medicine options etc. When I spoke to her she did confirm due to covid sadly everything is taking that little longer. I only found out as I was in hospital at the time but from what I’ve heard it can take a few weeks of results of mri. My partner has been the best support network for me and reading through your message you are that for your wife. This site and ms trust explain the illness in more but don’t worry we are here to support each other throughout it all. With good / bad days but word of big advice do not do what I done and google anything to try and match your symptoms to something - worst thing I could do or anyone could do. Medicine has come a long way in a short time if MS is the case. Keep us updated on your wife have fingers crossed for you she gets her answers soon and whatever the outcome this forum & the people on it will support you both. If you have any other questions I can try answer from my own experience :slight_smile:

Take care Laura

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Laura makes some good points, it is always tempting to use Google to help in our quest for info, I suggest that if you do this you should be smart and question stuff to try to validate it. Everyones experiences of MS are different so there are no black & white 100% answers. When I post stuff here in response to questions I am keen to point out that I am referring to my own experiences and opinions. Sometimes they might coincide or be similar with someone else’s experiences but they might also be 180 degree different!

It must be frustartingly difficult for medical professionals to share good quality info in a timeframe that works for everyone. We all have our own thresholds , i am generally mellow, but if I am being given the runaround I have been known to make a flippin’ nuisance of myself to make it easier for them to give me some answers.

Good luck

M

Massive thanks to you both, AprilLou and Mogace. My wife’s fear is that she’ll be essentially living the nightmare her mum went through (and I’ll turn into her dad who became her carer and our daughter will see the world as she did growing up). I am promising her I wont turn into her dad! However… because her mum had it, she could not find a life insurance that covers for MS which is another thing keeping us up at night. I am incredibly naive, so I’m struggling to find the right words to say (especially as I’ve fallen foul to Google, which indeed does not help). Her telephone appointment is next week. Whatever happens I’ll be there for her. Thanks again, and wishing AprilLou the best for your lovely wedding day which I hope goes ahead next year! BB

BigBear90 I really hope your wife gets her answers soon. Its a great thing for her to have you backing her up, shes a very lucky lady.