I am currently going through the process of trying to get a diagnosis (several times I have been diagnosed with MS and then told oops nope it’s not that and then told oh wait maybe it is) so I figured the best way to deal with everything that is happening to me is to blog about it. So if you know what it’s like to be tossed around from doctor to doctor and not understood then you should check out my blog. I use humour as a way to cope with the stresses of being stuck in a diagnostic limboland.
I`ve had neurological problems for 16 years and have been mis-diagnosed with PPMS a few times and it was finally discounted last year!
I`ve had 4 MRIs, 2 LPs, 2 EMGs, and oodles of blood tests.
I`ve seen 16 neuros. Some of them have sounded like they were really going to get to the bottom of what is wrong with me, but sadly, it usually came to nothing.
I`ve been a full time wheelie user for 10 years, am hoisted for all transfers and take amitriptyline and pregabalin for nerve pain.
Me too. The first time I was investigated for MS was in 1991 a few months after I had radiation treatment for hodgkins lymphoma. I had another scan in 2005 and one in 2011 . That one showed a lesion. This could all be related to the treatment as one neuro thinks yet another disagrees and thinks possible MS. Still in limbo with clear brain scan and LP.
I too had problems but if you highlight the link then right click - open link comes up and I managed to see it that way. Give it a try and hopefully it will work for you too
Hmm I can’t seem to figure out how to make the link work but I will look into it!
Also, thank you guys for the positive feedback! I hate that other people know what I am going through or are going through worse but it is reassuring at the same time to know you are not alone.
Also, thank you guys for the positive feedback! On the one hand I hate knowing there are other people out there who understand what I’m going through because I don’t wish this on anyone but on the other hand it is reassuring to know you’re not alone in this.
I needed to add some soft ware to see your blog, something about converting files, it was free, but I don;t think I could find it again as I found by accident rather than knowing what I am doing lol.
Just read and its very witty. Its interesting about the Parkinson’s element. As I approached this with my Neuro, for two reason, one because it is in my family and also some of my symptoms get worse (the spasms and shalking in my left arm, it went potty when I was having the LP) when I am under pressure and extra adrenalin ( I am rubbixh at spelling) is flowing to my brain. I read a wonderful piece on line via Dopadoc.com. Or it could be me grasping at straws, if you know what I mean.
Hi Lisamarie, I managed to get to your blog via Google I’m sure I’ll be dipping into it from time to time. Thumbs up for Star Wars stockings (says the almost 40yr old who got all six Star Wars films from her brother this year as the original three VHS’s were wearing out). I’m due to have my very first MRI in a few days and expect a diagnosis of either FND or MS, depending on the results (but strongly feel it could still be ms even if I get clear results.) Feel free to PM me, I love connecting with others. Especially ones with ‘cattitude’ who love Star Wars). I’m proud of my geek streak! Have you had a look at Pinterest for cute stuff? Have a (defiantly) Happy New Year!
Thank you guys for reading my blog and commenting on it here! I apologize for the issues you have getting to the link from the forum and hope I can resolve that eventually. It’s great to hear your stories and know I’m not alone although I don’t like that other people know what it is like to go through this.
Noreen - thanks for the lovely compliment. I certainly understand that not every GP is good but hopefully I will find a decent one some day soon! Take care!
Medion - the same thing happens to me. Those symptoms always get worse when I am anxious or stressed about something. My doctor even said it would be hard for me to have an LP because I might not be able to stay still for it because of the anxiety level.
Reikiblossom - I am proud of my geek streak too! I was semi geeky before but ever since I got with my boyfriend who is a giant nerd he is bringing it out in me more. He took me to a Comic Con for my birthday and after that it was all geek things all the time!
I’m sure I’ll be dipping into it from time to time. Thumbs up for Star Wars stockings (says the almost 40yr old who got all six Star Wars films from her brother this year as the original three VHS’s were wearing out). I’m due to have my very first MRI in a few days and expect a diagnosis of either FND or MS, depending on the results (but strongly feel it could still be ms even if I get clear results.) Feel free to PM me, I love connecting with others. Especially ones with ‘cattitude’ who love Star Wars). I’m proud of my geek streak! Have you had a look at Pinterest for cute stuff? Have a (defiantly) Happy New Year!