Last reply 3 weeks ago
Hello & glad to be here for support

Hi I’ve been meaning to post for a while and knowing where to start but after a few conversations here I go. I’m 46 now but symptoms started a few years ago but I didn’t realise what they could be, I’m currently undiagnosed and finding it all very hard and somewhat vulnerable. I had my 1st MRI in November 18 after a suspected TIA which showed an abnormality in the left temporal but another MRI a few days later did not show it. Symptoms continued so stroke team felt it was not likely to have been a TIA and more neurological. I’ve had all tests to rule out other possible causes from haematology and rheumatology to be told other than antiphospholipid antibodies they have came back negative and further MRI of brain and spine in August was clear accept for minor age related wear and tear in lower spine. If you read my symptoms you’d think I was crazy (I often question myself) but I know what I’m feeling is not normal. It’s doesn’t help having an obnoxious egotistical neurologist who has saw fit to label me a hypochondriac rather than listen and discuss my symptoms fully with me. I know deep down I don’t want it to be MS especially as my hubby has parkinsons but the way I’m feeling I will honestly be relieved to just know so I can deal with it and be the best that I can to be able to care for him. Did anyone else feel this way alone and like some kind of fraud? Has anyone had clear MRIs only to later still be diagnosed, what do I do next I feel so intimidated and fobbed off by my neurologist.

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timothy_little
3 weeks ago

To Mavis David’s it must be really hard for you to deal with a husband suffering from Parkinson’s disease and what you are feeling in your mind is real but I am sure that the last thing he wants to have is Parkinson’s disease however he does need as much support and help he can get it if you are finding it is all too much for you then don’t be afraid to ask others for help . Remembering that we are all people first and everyone in this world counts diseased or not. Look for the true measure in a person by how they treat you and if you think it is all too much please post whenever.No one should ever have to feel alone in their struggles.


mavisdavies
3 weeks ago

Thanks @timothy.little my husband was only diagnosed in March this year so it’s all new on top of what’s happening to me but thankfully we have an excellent parkinsons support worker who not only supports him but the whole family and it was this lady who suggested reaching out to MS support. We have good family support too but I do feel being here with others who have been were I am now or going through it at the same time will be extra support.


itsmewithms
3 weeks ago

I had symptoms through the years that were dismissed as due to nerve aggravation due to exercise or some other excuse but when my foot was sticking out at an odd angle with no associated pain or other issues I was referred to a neurologist. That was back in 2005 when MRIs were, thankfully, readily available for definitive diagnosis. The MRI showed lesions and I was put on Copaxone as a DMT. Had a few attacks over the next 11 years and switched up to Rebif. Have had no attacks on that as I most likely have moved to SPMS. I can still walk and function fine. I just have some balance issues that are compounded by a hip replacement so I keep a cane handy for uneven or slippery ground. I’ve also been switched over to Ocrevus.

I’d push for a definitive diagnosis so you can receive treatment to minimize progression. I hate to give an inch that I won’t get back 😉

My mother had something similar to Parkinsons where she had fluid on her brain that resulted in all the symptoms. She had a shunt put in her brain to push extra fluid into her stomach. That was hoped to slow progression but over time she lost mobility and it was hard to see her slip away from us in her mid 60’s so that she wasn’t able to do much with my daughter as I did so many things with my grandmother. I’m trying to stall MS as much as I can. There are too many things I still want to do-


stumbler
3 weeks ago

Ha Ha, @ mavisdavies , I don’t think any of us are glad to be here, but you are most welcome.

I sympathise with the situation that you find yourself in. It’s unfortunately not unusual, but that does not make it easier. There’s the fear of the unknown hanging over your head, which clouds your vision of the future. A vision which is already uncertain due to your hubby’s recent diagnosis.

This is a double-whammy of the worst sort, which must be pushing your stress levels to excessively high levels. This in itself may well be the protagonist of your symptoms. Stress is now accepted as a major cause for MS progression.

You do not need an unsympathetic Neuro! Perhaps you should discuss this matter with your GP, with a view to being referred to an alternative Neuro. This would also be a good opportunity to discuss the full circumstances of your situation to see whether there is any help that your GP can offer you.

Do keep a note of all your symptoms, so that you are able to compile a short, concise summary that can be offered at future consultations. This would provide good evidence to a question of. “What’s causing these symptoms?”


itsmewithms
3 weeks ago

In the US there is a wide variety of GPs that have different approaches and understanding of how our health and life are affected by MS and how all the pieces of our life fit together. As I had moved a few years ago and never established a new GP close to me I recently selected a dr to work with in my new neighborhood.

I was hoping to find a “functional Dr” but they are booked out for like a year! so found out there is a new “integrative Dr” at the facility just north to me that is just building up her patient list and had one session with her. I also wanted to set up a new PT in my area and inquired which of the ones available at the facility close to me had the most neuro training. Just a note that they all aren’t created equal 😉 hope you can find someone near you that is good to work with with the right training and experience-


mavisdavies
3 weeks ago

Hi @itsmewithms and @stumbler sorry to hear about your mum. I have just finished updating a symptom list for my gp to make a referral for a 2nd opinion. But in doing so I have wanted to capture in time detail what has happened and when to avoid being fobbed off which I fear has happened with the neurologist I saw. However, in doing so I fear it could be a bit of a double edged sword in looking a bit crazy but know what I’m feeling is not normal but don’t know what is causing these symptoms. It’s has recently though become clear that I may be currently experiencing an episode/relapse because a lot of old symptoms I had during what might have been my first episode in late 2018-early 2019 have returned with some new symptoms. The problem I have right now if that due to being made to feel like a fraud or some type of hypochondriac I’m am fearful of seeking medical help or whether I should be seen in A&E incase there is a way of detecting anything whilst it is happening.


stumbler
3 weeks ago

@mavisdavies , is there a possibility that the worry and stress caused by your hubby’s diagnosis has just upset you physically?


mavisdavies
3 weeks ago

I had the symptoms way before his diagnosis. @stumbler and my current symptoms appear to be effected but the weather/temperature. I suppose the stress of not knowing what’s causing my symptoms could have some baring on me. As there is not doubt they are scary and worrying. However, I appear to have become quite accustomed to them.


stumbler
3 weeks ago

@mavisdavies , I’m sure that you were worried about your hubby prior to the formal diagnosis. These things do tend to “conspire” against us.


mavisdavies
3 weeks ago

@stumbler I’d been having the symptoms for about 2 years before my first big episode but looking back before my episode I was really stressed out with work and do feel that has played a part in what’s going on as I understand that our emotional and physical health are one continuum.

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