How to manage symptoms waiting for diagnosis
Good morning all,
I recently had an MRI due to migraines that showed 2 MS lesions (other lesions as well they think are mini strokes related to my migraines). I am currently waiting on 2 more MRI's of the cervical and thoracic areas. The AC in my home the other day while I was working made my bones in my hands and arms feel like they were submerged in an ice bath. I am bundled up in hoodies, leggings, wool socks and uggs while I work in my home office and it's 80+ degrees out. I can only keep my AC so high as my 71 year old father lives with me and has heart issues and COPD and if its to stuffy inside it gives him breathing issues. So far since my neuro sent me to the MS specialist who I saw on 8/1, I have had my lower back and hips muscles extremely tight giving me issues walking, my right hand almost entirely locked up, this passed weekend was the back spasms into my ribs that made it hard to breath, then Monday started the cold sensitivity. The specialist JUST called me back from my Monday night message I sent through the portal and was very nonchalant about it all. This is extremely discouraging, scary, painful and anxiety provoking. Is this normal to not receive any help for symptoms while waiting for a diagnosis? And will these symptoms go away with treatment? Do they even sound MS related? My fear is if they aren't MS and I am waiting a month to find out it isn't MS, I am wasting time finding out what is truly going on with my body. Any help or advice is whole heartedly appreciated. I am ready to lose it emotionally.
From a moral support standpoint, you are not the only one going through this. I am also beginning testing for MS, and if confirmed, I likely had my first symptom 14 years ago. I have gotten no help beyond anti-depressants (because my doctor and I felt that it could be anxiety, when really the anxiety was from the symptoms, and the side-effects outweigh benefits) for my symptoms. I feel like a hypochondriac, and I know my family grows impatient with me at times.
I honestly feel the same way, like a hypochondriac! My daughter sympathizes to a point, the MS Dr disregards the symptoms I am having like they are nothing. If I am diagnosed as MS, I had my first "MS Hug" 15 years ago, then another 6 years ago. I am made to feel like I am making it all up and that I should stay off Google. I Google my symptoms because I don't know where they come from and no one gives me answers. My Rheumatologist says it's MS and the MS specialist says it's RA. I don't care which one it is but they are absolutely painful so someone needs to treat it now, not next month when I see the MS Dr after my MRI's! So I have to live with excruciating pain and feel like my muscles are stretching beyond their limit and shredding and my bones are painful and about the shatter in AC? Should I live in a hot shower for the next month or buried in blankets? It's truly frustrating that not 1 doctor can help me. The only help I have gotten is, hey you can work from home until we see you again. Great, now I have to make my father's condition uncomfortable because of my symptoms and you STILL aren't addressing my symptoms. The MS Dr called me earlier, finally, from my Monday night message about my back spasms and cold sensitivity making my bones extremely painful and all she asked is how I was feeling. I told her I was bundled up like an Eskimo, all she said is I was doing the right thing and she woukd see me in a month after my MRI'S. Gee...thanks. I will voluntarily go for a spinal tap if that will speed up getting my diagnosis to get medicated to help these symptoms. Is that not an option??? I am not a drug seeker, however I NEED relief as these symptoms I am having are extremely painful and if MS therapies will help give me the lumbar puncture, I will be there in 5 minutes!
I’m sorry you are having such difficulties with your diagnosis. My MS diagnosis was followed up with a RA diagnosis in the same month. So stay strong and insist that they treat you or go to your primary and have them address these symptoms. Good luck
It is quite sad the lack of concern some doctors exhibit. By comparison, it seems like my symptoms are light by most standards, especially compared to yours. I hope you get the answers and the relief you need sooner rather than later!
Agreed. Thank you for your response. It's definitely nice to know we are not alone in this journey. Best of luck to you. Thank you for listening to me vent my frustration.
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Thank you both for being here and sharing your experiences.
I'm saddened to hear how frustrating it has been for each of you.
It's unfortunate you are not getting the care and answers you so need.
May it provide a bit of comfort knowing you are not alone.
Sending positive thoughts to you both, Doreen (Team Member)
