Last reply 1 year ago
Newly diagnosed with MS

Hello everyone! This is my first post so I will apologize in advance for the wide range of emotions this may bring. Well I have to start out by saying that my diagnosis of MS was a complete surprise to me as the purpose of my MRI was to rule out a Pituitary Tumor. Well good news is that there was no pituitary tumor….who says I don’t have any luck….lol. I went through a series of emotions……the first of which was relief. Relief I did not have a tumor and secondly relief that I had at least a name to my various complaints over the last year primarily. I am a nurse so every symptom I showed, I explained away. I would tell my doctor but in the same breath come up with a reason for it. I have had tremors in my hands for a couple of years. I have a noticeable changes I. The past year with increase in migraines, almost daily headaches, light headedness with position changes, hyperflexia with my knees, clonus in my left foot, dropping things, Difficulty with fine motor skills in my hands, stiff knees and hips when getting up from chair and bed, tightness in calves when I get up that dissipates with walking, difficulty with memory, fatigue, neck stiffness and discomfort…..I could keep going on. When I stepped back and looked at everything, I thought at least I know I am not crazy or hypochondriac. A lot of my feelings were also thought to be related to my depression…..well not so much. I was referred to a neurologist and have tried for 3 Weeks to get an appointment. I leave messages and phone numbers with no return call. Even explained about my concern and anxiety… call. Tomorrow calling primary doctor and asking for a referral to someone else. This could be an indicator of attentivess and if so Iam not sure this would provide me the best care. With allllllll that being said. I will be in touch with how things go. Thank you all for listening. Trying to keep positive!!!!

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1 year ago

Hi @kimmer50 and welcome.

Your story and your emotional journey will resonate with a lot of us. A diagnosis of MS does explain all those “mystery” ailments in the years preceding diagnosis.

That was a lot to get of your chest, but committing it “to the record” must be therapeutic – a problem shared is a problem halved.

Good luck with the Neurologist and let us know how you get on.

1 year ago

your story sounds a lot like mine- very similar symptoms too. Although, I have also had a lot of strange sensory issues. I know it’s a hard time coming to terms with things and I understand about the anxiety. I am going through the public health system and it involves long waiting periods, but I don’t stress because I surrender control over it and know that all I can do is my best. If it does get too much, I suggest getting out of the house, even doing something simple like going on a walk or getting a coffee helps me. The support from this site has also been pretty incredible. You will find that you are not alone.
All the best.

1 year ago

Hello @kimmer50,welcome to you. I hope you will find this site both a reassurance and a welcome ‘buddy’ at times. I got diagnosed last year and while all the tests were in hand, I was fearing a tumour. Once you finally do access a neuro, hopefully the support will fall into place around that; MS nurse, follow-ups, other referrals, exercise plans etc. The biggest thing I have learnt, is to find ways to eliminate unnessary stress, as stress has untold impact on us. Also, you are doing great with the news, but you need to allow yourself a big space of time to absorb and take the news on board. Probably took me a year really. But that’s me, and we are all so very different! Take care x

1 year ago

@kimmer50 welcome to the club 🙂
As you are a nurse, do you not have greater access to the neuro ward at your hospital? My wife is a nurse and has access to all sorts of specialists. They even give her a nurse discount or sometimes probono (depending on the friendliness of the doctor. Worked out great when we needed an Obstetrician). It would be a great resource for you to be mates with the Neurologists/Neuro nurses at your place at work. Just in case more symptoms arise or you have any questions.
I have suggested to my wife that she switch nursing specialties from gastro to neuro. But with two new babies I dont think she is planning to change anytime soon. At lest I get free MRI’s (the perks of a family full of doctors/nurses).

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