Last reply 1 week ago
Worried

Hi there
I am new, a worried 57 year old woman !
I have not been formally diagnosed with anything but am having weird symptoms and sensations .
I am a nurse and am convinced I have MS.
My Doctor is not convinced.

Recent tests results are raised CRP and ESR
Low B12 but not low enough to treat!
Low Vit D
Repeated bloods show normal CRP a d ESR

I have tingling and numbness in hands and feet but not all the time , tired and sore shoulders, hips, muscle and joint pain .

I feel shaky and this makes me anxious, have lost my confidence and don’t want to socialise .

Thanks
Karen

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ā€˜xā€™.


laura-forde
2 weeks ago

I’m not a medically trained person so not too sure of the terminology used. But it sounds similar from my short experience that you’ve had a neurological episode which has caused your symptoms but your neurologist is not at the stage where she/he can diagnose. I went through this process for 12 months and when I was well was diagnosed and put on medication. It was a very stressful time and I felt like my life was on hold. I feel better now and I tried to use my time to reflect on my relationships with my family and friends. You need to do whatever your body is telling you to do, both physical and mental. It will pass. I sat and wrote little stories for my kids and did word searches to create some kind of “other life” . It’s ok not to be ok sometimes


itsmewithms
2 weeks ago

Does your brain or spinal MRI show lesions? That is typically what leads to a confirmed diagnosis- I understand that sometimes it is a battle to have the order written to get the MRIs and get them read but getting a diagnosis and starting treatment is important.

I never really have had much pain or joint pain directly from my MS…more from my messed up gait due to my MS while my husband had joint and back pain due to Lyme disease. As a nurse hopefully you can pull together the case to get in the MRI tub…


applecake
2 weeks ago

@laura-forde
@itsmewithms

Thank you for replying, seeing Doctor again this week coming so am going to push for an MRI. Staying positive x


itsmewithms
2 weeks ago

Good…sounds like you need some resolution and I hope you get it šŸ˜‰ With some answers you can move forward-


mlgilber1
2 weeks ago

I also had low B12 and Vitamin D before being diagnosed. Iā€™d definitely push for the MRI.


itsmewithms
1 week ago

You have some medical training so would probably understand a lot of the articles out there better than I do as an accountant ;0 I just know it is all expensive! no matter what way you turn! But here are some of the favorite links I have found. Knowing the most you can will equip you to have a good discussion with a neurologist. Mostly I talk to mine about any changes I should make to life habits, getting enough sleep, reducing stress, any changes to diet I should make and then the best drug treatment plan. He seems most equipped to only talk about the last one while they should all be part of the picture. Even when I went to the Mayo in Rochester they didn’t feel that diet was an effective tool against MS…they said they don’t encourage people to eat cheeseburgers everynight as that wouldn’t be good for anyone but to eat a good diet helps everyone. They didn’t support any of the MS specific diets that people are selling books on or making money doing speaking tours.

Here is one link I had for newly diagnosed- https://mssociety.ca/research-news/article/developing-and-testing-an-interactive-online-patient-decision-aid-to-assist-those-newly-diagnosed-with-relapsing-remitting-multiple-sclerosis

or https://www.healthline.com/health/multiple-sclerosis/what-ifs-after-diagnosis?slot_pos=article_2&utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=multiplesclerosis&utm_content=2019-10-10&apid=29101565#takeaway

One on the various DMT options https://www.healthline.com/health/multiple-sclerosis/how-to-evaluate-your-ms-treatment-plan?utm_source=facebook&utm_medium=opt&utm_campaign=tysabri-retargeting-ms-desktop&fbclid=IwAR1oCSj5oRuEzJc2B4mTiwvcw_Qnwgsn-3zRzy3mU_s1cjLsvZV59_DYjsQ#the-bottom-line

Your age can also have an impact on the type of MS you have and it’s progression. I will be seeing Neuro Phsych in Mayo in a few weeks. They are very hard to get in to see! often with a year waiting time so I am glad I got an appt about 5 months after requesting. I am hoping they can measure cognitive loss and hopefully review grey matter and white matter impact based on my lesion locations and changes. https://www.healthline.com/health/ms/ms-and-age#4

https://www.msmindshift.com/ms-lesions-and-grey-matter/

So- equip yourself for your appointment knowing as much as possible to ask the right questions and be taken seriously. Write down all of your symptoms, their patterns (ie only at night or when sitting, or when walking) and how they change during the day or when you are fatigued. Only by going through some of these sites did I even know what some of the MS symptoms were that I was experiencing. For example when I told the Mayo what my initial symptom was in my vision (a blind spot in the lower right quandrant of my right eye where a small kidney shaped spot didn’t have vision but instead had a black and white checkerboard pattern) for three months in my 2nd trimester they said that was likely an optical migraine and not MS. It went away in my 3rd trimester. My biggest mobility issue is foot drop in my right foot and when trying a FES to see if that would help they asked me if my knee also sometimes buckled and I said yes, occasionally, and apparently that is also due to my MS. I now recognize that I have some spastacity and spasms that are improved by taking Gralise.

So- prepare yourself for your appointment by knowing all the possible MS symptoms and which ones you experience. The symptoms and the MRI could point you another direction entirely. Hopefully you get a good neurologist and some resolution-


stumbler
1 week ago

@applecake , these sound like neurological symptoms, so this is the domain of the Neurologist. In the absence of an explanation from your GP, you need to push for a referral.

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.