Baffled and frustrated

[swingingwillow]

Hi all,
I just got back my MRI and my GP and I are frustrated that my previous MRI showed lesions but my current MRI shows no lesions.

I have calmed down somewhat as I have looked on this site and found a thread with more than a handful of people who have had this happen to them as well and they have a diagnosis of MS. So it seems that I shouldn't be too alarmed by that. Meaning was the doctor reading my MRI just not paying attention and then the movie in my head had me phoning him/her and asking are you even doing your job?

My last neuro said that my lesions weren't in the right place on my brain anyway. ??? I have found this opinion controversial even on this site.

I'm housebound, I can't walk properly, I fear falling over. All of my neighbours and people who saw me going into the hospital for my MRI can see what's happening to my walk and comment and offer help. I look worse to others than I think that I do.

I'm frustrated because I don't have a neurologist to call up and show these symptoms to although I have a video of my first day. It's because by the time I can get an appointment my symptoms are gone. I'm not getting better so it's possible that a neurologist will see it but it depends on how long it takes to get an appointment but even with these thoughts, I really really really hope that my walk gets better regardless.

I'm also frustrated because I'm depressed right now and now I have this and I'm afraid of a neurologist jumping on the conversion disorder bandwagon and offering me the wrong type of help. My shrink already says my depression and my symptoms that seem characteristic of MS even though I have no dx are in fact separate.

My husband is doing everything but starting today I'm going to try and make dinner and see if I can do that every day. I also am aware that I have to be careful not to overdo it. Yes, I am doing that badly right now that the thought of making dinner seems like a huge challenge.

Any words of wisdom right now would be appreciated as I sit here with my hair standing up on my head.

Take care,
swingingwillow

[JerryD]

willow,
I am sorry that you have this 'elusive' malady. I can see your frustration. I have a suggestion that involves you taking charge of your own well-being.
I would suggest you try a change in diet. Drop dairy products and limit animal protein to less than 20% of your total calorie intake. Eat more green veggies and the 'rainbow' colored fruits and veggies.
Get your PCP to do some blood tests for vitamin D and B-12 levels, as well as the normal HDL/LDL/ triglycerides. This site has a lot of information about diet. Good luck

[lusciousleaves]

I'll second what Jerry said. The most we can do is to improve our own basic health as much as we can. At a minimum, you'll feel better, heal better, and feel empowered. For those of us in limbo, these are the only tools we have to fight back. The medical process is slow, cumbersome, and frustrating. Just try not to let it get to you, it only adds to the stress.

It's so hard to be patient when things take a quick turn for the worse. All we can do is call in to be seen, go to the ER, or wait for it to pass. You can request to see a PT even without a diagnosis.

I've been asking my docs for a game plan, hitting the what if's. This helps to give me direction in case certain things happen so I'm sure to not call in too often and become a pest. Neuro says for new onset leg weakness, go to ER. Bothersome blurred vision, call the neuro-ophth. Trouble urinating, see the urologist.

Over time, you build a network of docs that are up on your issues and can help alleviate whatever crops up during the diagnostic process.

After this recent breathing trouble, GP said that sometimes a diagnosis doesn't come from the obvious source, but often comes from a specialist on the periphery. The more data we collect on various health issues, the better the chances of getting to the bottom of things.

Just be persistent and make sure they don't get dismissive. If they do, you have every right to be as dismissive and find a new doc.

[lusciousleaves]

I'm sorry, I didn't see you were having trouble with balance. Are there any dizziness and balance specialists in your area? They can be really helpful in doing diagnostic testing and setting you up for PT to help regain your balance. The vestibular system is highly adaptable. These are neuros who are specially trained to diagnose and treat balance disorders. Among the tests they can run are VNGs, EEGs, auditory brainstem response, etc. These tests can find lesions in addition to MRIs.

[swingingwillow]

willow,
I am sorry that you have this 'elusive' malady. I can see your frustration. I have a suggestion that involves you taking charge of your own well-being.
I would suggest you try a change in diet. Drop dairy products and limit animal protein to less than 20% of your total calorie intake. Eat more green veggies and the 'rainbow' colored fruits and veggies.
Get your PCP to do some blood tests for vitamin D and B-12 levels, as well as the normal HDL/LDL/ triglycerides. This site has a lot of information about diet. Good luck

Thank you for your kind message.

I have been thinking of eating very healthfully as I once did before. Whether or not it helped me at the time was highly unclear but when I felt good I felt really good and it can't hurt to hope that taking care of myself as best as I can can benefit me in ways I may not even be aware of.

I have eaten a dairy free, wheat free and following that as much gluten free as possible for many years now. I have been thinking of going back to protein the size of my palm, half of my plate being veggies, and my starches being brown rice and sweet potato. I'm considering cutting out all chemicals, sugars, white stuff as much as possible as well. So your message is further urging me to just do it! Plus other beneficial stuff that I've done before. I'd like to add back in my supplements but I'm constrained by a forever shrinking budget and we're focussing on just feeding our family, however, I can still pick what I eat.

I'm waiting back to see what my Vitamin D levels and B levels are, and I think that includes HDL etc. but will double check and add it to my list of my next round of bloodwork if need to.

Thank you for encouraging me to look after myself. It gives me control over something if that makes sense and it makes me more positive in one area of my life.

Now is it my imagination? I first took a dive when I got overheated as the weather seemed to suddenly get nice again and warm, and now that it's cold out I'm starting to feel better and although I'm not 100% I have noticed significant changes - my walk shows an improvement, my energy level has risen, and when I look in the mirror I have my glow back as before I looked sick. I don't feel like my body is fighting to heal quite as much and I'm starting to look around my house and am starting to think "hey I wanna do that." Does the weather thing ring any bells?

You have a good heart,
swingingwillow

[swingingwillow]

@lusciousleaves
I typed out a response to you and then it went "poof!" Oh well, I'll try again.

So I'm understanding from you that I need to keep my head above water and keep myself strong for this ride. OK, I'm willing.

When you say PT do you mean physical therapist?

I was being largely dismissed by my last neuro as he just couldn't figure me out - I really wish that they could just say "Sorry, I don't know." I would respect that so much more than the attitude they can take on.

I did challenge him on one important point, I said "I can make changes to my life and accommodations for numbness, fatigue, etc. etc. but I cannot ignore the fact that I fall and the next time I fall I may break my neck or end up paralyzed if I land wrong." He said he couldn't help me with that but then promptly wrote up a referral to a movement disorders specialist. So I think that I may have been less dismissed than I thought.

I think that movement disorder specialists look after balance as well.

In your opinion, I'm starting to feel a bit better physically and have noticed that I got this way when the weather suddenly warmed up and now there is a cold snap and I'm noticing some improvements. Does this make you think of anything?

Thank you for your kind words and message of support.
swingingwillow