New and waiting

[Alexnicole91]

Hi,

My names Alexandra. I’m 28. I’ve been sick on and off for 8 years. I’ve had two years of feeling great and then end of June I got sick again. I was running about 8 miles a day along with weight lifting. I have been a really healthy eater eating a plant based diet for 11 years. When I got sick and went to my doctor she immediately sent me for mris that came back normal. But my symptoms got worse.

Including dysphasia, weakness, loss of coordination, and pain. She sent me to a neurologist who was not great. He did a couple test and then said he did all he could do. He also insulted me for being a vegan saying I probably needed more protein while holding my test results that my protein intake was above average. He also had me do a 4 hour glucose test which he said maybe I had diabetes, he could have done an A1c instead. The nurses i work with did one in office my A1c is 4.4, btw.

Anyways my primary care doctors still thought it was neurological so she sent me to another doctor who has been really nice. I had a LP done last week and have started getting results in. He said he is going to test for everything. it’s been really hard because I get really dizzy and have difficulty walking. I think my job will fire me soon due to how sick I’ve been and I’ve had to miss so much work. I’m trying to stay positive but it has been hard. At this point I will take any diagnosis. Because not knowing has been the worse part.

[KoKo]

Hello Alexandra

I'm sorry to learn that you have been dealing with serious symptoms, especially at your young age and prior good healthy diet and exercise.

That doesn't seem fair.

Anyways my primary care doctors still thought it was neurological so she sent me to another doctor who has been really nice. I had a LP done last week and have started getting results in. He said he is going to test for everything. it’s been really hard because I get really dizzy and have difficulty walking. I think my job will fire me soon due to how sick I’ve been and I’ve had to miss so much work. I’m trying to stay positive but it has been hard. At this point I will take any diagnosis. Because not knowing has been the worse part.

Good for you that you now have a neurologist who wants to find out what is causing your symptoms.

Regarding your job, have you looked into FMLA, which can help protect your employment if you need to take time off?

Waiting to find a diagnosis is very difficult. Try your best to keep your anxiety and stress in check. Do what you can to practice relaxation a few times a day, if possible.

Hope you keep us posted with how you're doing, and what you find out.

Take Care

[Mamabug]

I’m trying to stay positive but it has been hard. At this point I will take any diagnosis. Because not knowing has been the worse part.

Yes; I agree. Limbo is a tough place to be. It's nice to have a diagnosis; then treatment can begin.

I'm glad you're eating a healthy diet. If vegans are educated about nutrition, it can be a healthy lifestyle. I've known some vegans who aren't supplementing with B12, which is important. And other vegans who fill their diet with empty carbs (too much btead, pasta, etc). Since you're a long-term vegan, you're likely avoiding those pitfalls.

Some of us have had some success with going off gluten and dairy. As a vegan, you're already off dairy.

Exercise helps maintain strength and delay progression; you sound like an active person.

I echo Koko's suggestion to minimize stress and practice relaxation or mindfulness.

I hope you find some answers soon.

[REG53]

Hello Alexandra and welcome to msw. I'm glad you are going to a new neuro and I hope you find answers. Please let us know what they find.

I wish you all the best.

[NoraS]

I'm going to echo everybody else and also urge you to check into FMLA. You can do a Google search to see if you'd qualify, and then you could contact your HR department or supervisor. I was in danger of losing my job over absences, and the FMLA saved me for a while.

I hope you get some answers soon!

[Seasha]

A warm welcome to you, Alexandra. Sorry you don't have any concrete answers yet. I'm glad you fired your old doctor! Your new neuro sounds on top of it and answers will hopefully come soon, be it MS or not.

I echo others suggestion to look into FMLA.

Here's a fact sheet about it from the US Dept of Labor https://www.dol.gov/whd/regs/compliance/whdfs28.pdf

And more here with questions and answers! https://www.dol.gov/whd/fmla/fmla-faqs.htm

Hope you are doing OK with this process as I know it's no fun being in limbo.
Please check back with us with results and take care