MS or Frederick's Ataxia

Oh, goodness, . I'm really sorry. I know the uncertainty can be really frustrating and maybe even nerve-wracking. And it sounds like you have some familiarity with both MS and FA, so, I guess that's helpful? Although, I can see how that knowledge and the personal experience of watching two loved ones cope with MS and FA may make things extra scary for you. I personally hate what I call "waiting in the gray". I don't like the unknown. I don't like waiting for a diagnosis or bad news or a major life change. That waiting period just about drives me nuts. I would rather just get on with it, if that makes sense. So, I feel for you as you find yourself in this waiting period.

I hope the idea of more testing isn't too daunting to you and genetic testing can help rule out some conditions or even give you that important information for yourself and any relatives that may be impacted by a possible genetic condition in your family genetics.

And what's with being faced with serious diagnoses, but finding it takes quite some time to get that important appointment? I know doctors have plenty of patients to see, but, again, waiting is NOT my strong suit. So, I do hope you are able to get that appointment very, VERY soon!

Please keep us posted and feel free to come here if you need to vent or share or whatever.

And, I hope those additional tests give your doctors and you a very clear diagnosis.

Best, Erin, Team Member.

Thanks for reaching out to me. I can't even put it into words how frustrated and scared I feel, but you said it perfectly. Waiting is not my strong suit, and I don't see that changing after 53 years. I want further testing because the "gray zone" is a difficult place to be, I would rather know what I'm dealing with and get going. This state of limbo is driving me nuts. I know there's no answers that anyone can give me right now, I just needed to vent, so again, thank you for allowing me to vent.