Even though I haven’t been diagnosed yet, I’ve been doing a lot of reading and research. All these weird and new symptoms have only been going on 6-8 weeks and it’s 3+ weeks until I go back to the ENT and have my neurologist appointment. I have missed 1-2 days a week of work since this started. So far, my job has been pretty understanding, but I don’t know for how much longer. From some of the stuff I have read, it can take YEARS for some people to get relief. Even when I go to work I have constant brain fog and anxiety and when you mix that with the headache and fatigue, it’s hard to be productive. I am a project administrator for a construction company and we are at the end of the job, so there are days when I don’t have much to do which is probably a blessing because I have to force myself to do the few things that come across my desk. I only worked 50 hours in the past 2 weeks and because I don’t have time on the books, my paycheck will suffer. Luckily, I have money in savings, but if this keeps up, I won’t. I also have a flexible spending account that started on May 1st and I am down to less than $300 on it and have two appointments in 3 weeks that are $75 each. I have been dealing with numb limbs for 8 years and no one can tell me why after going to every doctor under the sun and now this possible VM only adds to my depression and anxiety. I am so worried that even though the ENT thinks it is VM, that the neurologist won’t and I will be in limbo again for many years without a diagnosis. Without a diagnosis, I can’t get treatment. I am OCD and it’s driving me crazy not being able to do things that need to be done. I do just the minimum I can get by on, but I really just want to stay in bed and sleep and rest. How does everyone else handle this?
Hi Katy. In a word ‘No’. Those that do tend to struggle. For many people it’s a chronic long term condition. It is very debilitating. Most people find they have to take time out. Some end up changing the job completely. The recovery package includes a big portion of Trigger Reduction (computer screens, commuting etc etc). Personally I wasn’t working when chronic MAV struck but I know I couldn’t have continued in my previous role had I been. I had previously already changed jobs because of episodic episodes. However I would just hang in there, get a diagnosis and try any recommendations for treatment before making major life changes. Apart from the rest such changes are highly stressful in themselves and your system doesn’t need that just now. If it is VM you have then much will depend on how well it can eventually be controlled. There is no cure or true recovery just control is the aim. So much for the long term.
Short term. Don’t anticipate trouble. It may never happen. You will probably get a diagnosis and suggested treatment which helps and in a few months you may be well enough to get on with your current life. To give yourself the best chance I would say try to control the depression/anxiety and if it’s possible (no medic me) get treatment for the OCD. The less other unresolved medical things you have going on in your life the clearer the road to MAV control. Also keep reading. Great idea to self educate. Try the other non medical interventions, diet etc suggested in sites Wiki. Then read @Janb and @Linds77 personal diaries. I selected those two because they are virtually complete and two success stories and they illustrate a couple of my other points. (Unfair to cherry pick through the category really because there are many others worth reading too). You will notice from reading those two PDs both ladies were recent new sufferers who received prompt attention and treatment and both were able to take Time Out for treatment to work. IMO two very important pluses towards bringing about relatively quick improvement. Long term sufferers tend to need much longer to achieve some sort of control. Ask @sputnik2. Another long termer like me. Helen
Thank you for the informative reply. I tend to worry a lot, so it’s hard to put it aside while I wait for appointments to confirm (or not) a diagnosis. I have been dealing with numb legs and lots of other issues for 8 years and still don’t have a diagnosis so I just live with it, but it drives me crazy not knowing. They thought it may be MS, but that was ruled out because of no lesions on the brain. Now all this new stuff has happened so it’s a double whammy. I do like my job and my boss as far as working goes, but I missed a lot of work due to the other issues before this new stuff started and I hope they keep me around. I have read a lot of stories on here, some are scary and others are not too bad. You are right though that I may not have this even though everything points to it. However, everything pointed to MS too and they say it’s not that and I guess that’s what scares me. The dizziness is mostly when I am in bed or bending over, but sometimes when I drive it looks like things on the side of the road are moving and they are not. I am on medication for the depression, so it hasn’t been that bad, but the anxiety has been heightened by all this. I will check out the PD’s you suggested (and others) and keep reading because knowledge is power. LOL Thank you again for the support!
I have kept a full time job through my VM fight. However there are stipulations I need to tell you about.
I am in Account /Project Management also and work for a relatively small(er) independently owned company where I’ve worked for 17 years. The ownership, management and my coworkers are like family… so when I got sick, everyone rallied to my aid. So, that’s stipulation #1.
My job is 80 miles (one way) from home, so I worked from home a couple days a week pre-illness, so I was well prepared with an in-home office etc. I work with a team of people who helped me, without my asking… they just did.
I never missed a day of work, but I spent many MANY days at my computer feeling like I was being thrashed around, when in reality I was sitting still. Many days, staring at my screens with eyes so blurry I couldn’t read anything on them. I kept going and I kept showing up though. I only missed days that I had dr appts. I even made the every other day commutes, when in all reality in retrospect what the most foolish thing I ever did and thank God I never hurt myself or anyone else. I do NOT recommend driving while ill with this disorder!!!
I do however recommend showing up as much as you can. I have always thought that my work challenges, the stimulation, the interactions… even though exhausting; were a large part of my healing. I personally needed that. I needed to talk with customers every day, to have something… anything to think about other than my illness to keep me going. I’d cry every day, I’d wake scared every day, I’d think I couldn’t possibly do it another day… but I did and I’m glad I did.
Obviously this can’t work for everyone and I did have home days in between office days. Is your job one that can be remote at all with office days being a cpl days per week? 2020 sure has shown that so much business that otherwise had to be done inside an office building, can be done working remotely. It may be worth talking with your management about. Sometimes, if you ask someone to be part of your helping process… to be your partner in it, they are very receptive to helping when they can. I hope that is the case for you
Well I am no medic but surely any numbness is a neurology issue and VM most certainly is. Probably not so much a double whammy as a new manifestation or extension of same condition. Just a thought. Have you ever been tested for Charcot Marie Tooth?
@Naejohn That is quite a commute. I don’t know how you did it. With being a PA at the end of the job, right now I am located in the home office which is just over 5 miles from my house. I can go home for lunch and see my dog, which I love. Being that there’s a pandemic, they have us all spaced out so I am in a room by myself. If they keep me on and I go back out to the jobsite, depending on where I go, it might be around a 30 minute drive one way which isn’t bad. I prefer being on the jobsite with the men than with the women in the office. When I had to be tested for Covid the first time, they let me work from home and it was only a few days and I was grateful for that. The second time I had to be tested, I was told they weren’t letting anyone work from home right now. I always considered these people like family also, but that really hurt me emotionally and financially because I have no time on the books so I didn’t get paid. When the pandemic first started they let the people in the office work from home for months, but since I was on a jobsite with only 2 men, I had to go to work every day. Now that I am sick, one would think since I asked to work from home, that they would let me under the circumstances which leads me to believe that they may not want to keep me on. Or maybe I am just paranoid and they are savings dollars where they can, but either way it shows I am not as valuable to them as I would like to think I am. My mom and I discussed the fact that maybe all these issues I’ve had for 8 years could be related to what I am going through now, but just now found someone that knew what they were doing and possibly diagnosed it (sort of). I never even heard of VM before the ENT suggested it the other day and I have done tons of research on my symptoms. I think I am going to change my GP also. I just hope I am finally going to get answers and depending on what they are will have to decide where to go from there.
My VM flared up at the worst possible time last year: I had just left one job, and taken two weeks off before starting my new job (which was sort-of a dream job). So of course the dizziness flared up during that two weeks, leaving me unable to start the new job, and unable to return to the old job! And of course I had just, one month earlier, moved with my partner to a new flat, so there was a lot of rent to pay, and no way to get out of the contract. Which left me not only dizzy but in full-on panic mode, and crying a lot of the time, which definitely didn’t help the symptoms!!
I was very lucky that I found something else a month later - a busy shop job, but I explained the condition and they were understanding and allowed me to take time off the shop floor, sit quietly out the back, etc. Most importantly, it’s two minutes walk from my house, whereas the old job had been a train ride away. At that time I couldn’t get on a train for about six months, not only because the journey made me imbalanced and disorientated, but also because, standing on the platform, I felt I was falling onto the tracks, which was very scary.
These days - yes, still full-time work in the same shop, which is fairly good, most of the time… though occasionally the lightheadedness and head pressure flare up. But it’s tolerable.
To give yourself the best chance I would say try to control the depression/anxiety.
Yes I was a full time college student and am still a teacher.
@Lunapalm oh you’re a teacher?? Me too. I’m off for the rest of the year. So my sick leave is well and truly gone. I’m anxious about next year already. Please give me tips about how you manage for when I return. How far along this recovery journey are you?
I am a full time Emergency nurse. I took 9 weeks off and saw a neuro who put me on a big dose of amitriptyline and I’m 90% better. Now I’m on a phased return to work.
Well done you!
I am sure being able to take some time out without having to worry about making ends meet greatly enhances a speedier result.