Hello

[havingfun]

Hello from Arizona. I am currently a kindergarten teacher. I have also taught children with special needs. My neurologist has written 'assumptive MS' in my chart. The neurologist, rheumatologist, and nurse practitioner all say it is MS but they have to wait for another flare before they can call it MS. At this time the brain MRI does not show lesions. The neurologist plans to scan more than just the brain during the next flare. It is a little frustrating for me because I have been having flares for over 10 years now but since the neurologist and rheumatologist have only seen me a few months they can't diagnose anything yet. I thought this was a very long flare but was told this is my new baseline. Yuck.

I am using a cane to walk due to 'wonky' (love the word) legs and dizziness. When I talk I may or may not be aware a wrong word came out. I struggle to find the words I want to say. Not good for a teacher.

The rheumatologist said if the gabapentin decreases the pain he can diagnose fibromyalgia. That at least will help me when I apply for disability the last month of school in May. We will have to sell our horses to make ends meet. My husband will make $550 a month after he pays for my health insurance. We are praying for a miracle for disability to go through quickly. We have a good savings and the house is paid off but it will go quick.

That's the bad. The good is my daughter and son-in-law moved in a few months ago before my body really gave in. They have been a tremendous help and surprisingly we all get along very well. My husband of 30 years is extremely supportive willing to do anything he can to help me. When I asked if I should spend the money on a good set of Leki trekking poles when our income will decrease dramatically in a couple of months, he didn't hesitate to say yes. The cane just isn't enough when the dizziness get really bad. (It was bad before the meds which made it worse.) The dogs sense something is wrong and cuddling an extra lot which helps ease the pain somewhat. Once FMLA reduced my work week, the pressure is off at work. I admitted I have not been teaching well this year. Despite that, 3/4 of my little ones are reading.

I have a close friend with MS that has been telling me for years I have MS. She has been helpful loaning books and pressing me to be more active when I have been afraid to the past couple of months. I looked up exercises for MS and what did I find? ActiveMSers!!! I have started water walking in the pool and doing Callenetics DVD which combines yoga, pilates, and stretching on my days off work. I love to walk so will start doing that again when the trekking poles are delivered.

I'm looking forward to getting to know some people on here.

[teena marie]

Welcome,

You've a lot on your plate. Good for you to keep moving. It's the best medicine. These crutches are amazing as you'll see in the review section https://www.sidestix.com/ and may be covered by insurance. Good idea to go for bilateral support.

Keep us posted,

Teena Marie

[Suebee]

Havingfun,
I am sorry you are going through so much. Know that you're experience, unfortunately , is not unique and you're not alone. In my case, i had to learn to be a strong advocate. I suggest getting a consult "second opinion" from an expert dr in MS. As I understand it, there are some who believe a case senerio such as the one you describe can be diagnosed with other evidence in order to start disease modifying drugs. For eg, EMG may be able to demonstrate your pain is of CNS origin, as well as EEG. In addition there are some special MRI's that can show damage to brain based on activity. Also be sure they have tested for markers for lupus, Lyme , and sarcoid. For example, a chest x-Ray can help diagnose sarcoid. Glad you joined our club. We do understand!

[havingfun]

Thank you for responding. I realize the process I am going through is normal. I really am fortunate to have my husband, daughter, and son-in-law in the house to support me. (And get on me to move.) Today is was 90 out and I was exhausted from working the previous 3 days. My new Leki trekking sticks arrived so I have been alternating resting and walking around the house. The dogs don't quite know what to make of them. My legs are a little less wonky this evening.

I also have lots of prayer support from church. We have asked for finding a good home for our horses. The lady we buy our feed from is very interested in one. Having her buy him would be an answer to prayer. She spoils her horses.

The sidestixs seemed so expensive so for now we went with the poles. My legs still have muscle, just fatigue and dizziness get in the way. I am trying to keep the muscle as long as I can. They are feeling weaker each month so I know I will have to move on to something else eventually. By then insurance should be willing.

We are very much trying to be positive by figuring out how to do what we like, maybe not as much or in a different way. We plan to do our walks in the park where there are lots of benches to rest on. My husband mentioned getting a canoe to go on the water since I cannot paddle board. The wind picks up suddenly here and I stopped about 3 years ago when I struggled to get back to shore a few times. We decided to give ourselves permission to cry and through an occasional fit and move on.

Future income is our biggest worry. Not having any diagnoses yet means I am not eligible for disability. Once I have one, I have been paying into long-term disability insurance. A lawyer told me I should qualify with the diagnosis of fibromyalgia. If all goes well, I will sign the contract to teach next year, the rheumatologist will diagnose April 30, and I will tell my principal the doctor says I cannot work and must file for disability. That will give her lots of time to hire a new teacher for next year.

I live in a smallest town. My friend with MS is insisting I drive 4 hours to a hospital in a bigger city with a MS department. I thought I should wait and go after the diagnoses of MS. I emailed them for advice & if they take my insurance. My rheumatologist was surprised the neurologist didn't start MS meds. They have tested for many things. Vials and vials of blood have been taken multiple times since August. The doctors are amazed how good my blood work is. I have been eating good for years and take lots of vitamins. I'm not sure about the sarcoid; I don't remember seeing anything about testing for it.

I'm trying to get things lined up while I still have this much of my brain left. Cognitive issues are a big problem. I had lots of problems writing 3 checks to pay bills today. My husband lets me do things because I need to feel needed and then checks I did it correctly or helps me (like taking lunch out of the hot oven this afternoon due to my wonky arms). Like I said, I am very fortunate to have the support from so many people, especially him.

[ActiveMSers]

Hey havingfun, wanted to personally welcome you to ActiveMSers! Been swamped lately and am finally getting back onto the forum. So glad you found us.

[Suebee]

Having fun, I think your friend that suggests you go to the big hospital and see MS specialist is a good idea. A MS specialist will be able to review all medical info and make a diagnosis with out the standard 2 separate flares requirement. This was imperative for me, I had one aggressive attack that made me bedridden. Because I had a top notch neuro, I went on DM drug and had intensive PT OT Speech, which I credit to my current ablebodiness. Also an MS expert will have knowledge of what low levels of vitamin d and b12 levels require supplementation. These vitamins can affect cognition. The MS specialist will have experience in what level of disability will qualify for SS or LTD. This is why I think it's so important that you go. It could be you feel afraid if official diagnosis but that will allow you to get on meds and start recovery. MS is a fickle disease. Your body could improve, give it every chance Best wishes. Suebee

[havingfun]

Thank you for the replies.

SueBee, I thought I couldn't be diagnosed with MS with the MRI showing no lesions & lumbar puncture clear. My friend said they should have done the neck and spine as well. I haven't received a return email so will call the MS department of that hospital on Thursday when I have a day off. I also need to set up cognitive testing when I can find someone that does it.

I was so tired and dysfunctional today they set me up to work 1/2 day tomorrow on top of the usual Thursday and Friday off. My D and B12 level is on the high side of normal. I supplement quite a bit.

It's nice to hear from people that get it. My family loves me but can't.

[ActiveMSers]

havingfun, it's rather uncommon to have a clear brain MRI and spinal fluid yet still have MS, but it's common enough. My first brain MRI was clear, but lesions showed up on a later spine MRI.

As for your family not getting it, at least you have this family to lean on! Hang in there.

[havingfun]

Hello,
Dave-My family is having a harder time with this than me. I am used to being in pain and am so relieved the gabapentin is working to decrease it. They are seeing the other symptoms I told them were there but hid otherwise increase to the point I can't hide them anymore. They are wonderful.

Sue-Bee-I will private message you.