Frustrated!!

[Aggie_Ama]

A few years ago I lost 40 lbs and along the way developed a tremor. They technically call it a Benign Essential Tremor but benign it is not. At the height of it I couldn't write or eat anything with sauce or soup.

First the doctor did a battery of blood tests, I seriously had multiple blood panels, EEG, wore a heart monitor and then sent me to a neurologist for evaluation. The first neurologist was terrible and but me on an equally terrible medicine. At one point I was taking 250 mg 3x a day of Neurontin. I was dispressed, irritable and stupid (it made me feel foggy).

I finally gave the doctor the bird (not literally) and went to the Parkinson's clinic at Baylor College of Medicine. They are also a premier movement disorder clinic. There I got put on Primidone and went on with my life feeling less depressed and a little sharper. I moved here and found an amazing neurologist and gained 30 lbs where I was back at my pre-weight loss level. The neurologist became convinced last summer my tremor had done the rare thing of going into remission and took me off the meds.

Okay, now here we are. In the last month I have been back on Weight Watchers and lost about 10 lbs to date. The tremor is back. It is faint but it is here, the wobbly handwriting is the first sign and I know it will get worse if it follows last time's path. I am so frustrated. Every doctor says there is no weight correlation, my blood work looks normal everytime but something is up. I am going to my GP next week for a blood panel but I am so frustrated. I don't want to go back on meds but the alternative of throwing dressing, salsa, food everywhere and having handwriting I cannot read isn't an option for me either. I know we have worse health conditions on here, heck my husband has a worse one but dang it. Can I not be thin and shake free?

Sorry, reservation for a pity party of one.

[maillotpois]

How incredibly frustrating that must be!! Congrats on the 10 lbs - but GRR!!!

Can you go back to that good neurologist?

[SadieKate]

How frustrating! Have they done any MRIs or scans for anything that might not show up on blood panels?

Maybe 10 lbs in one month is a bit fast for your metabolism. If I tried that I'd be shaking all the time from hypoglycemia.

[redrhodie]

Oh, I'm so sorry! That is frustrating! Are you on the same diet you were on when you originally lost the 40lbs?

[Aggie_Ama]

Maillotpois- I am still a patient of the neurologist here, so I can see him if necessary. Probably can get in pretty quick too as opposed to a new patient. He is still on my insurance and I would pay out of pocket after my experience with Dr. Neurontin pusher.

Sadie- Well it has been less than 2 lbs per week, I guess I am at closer to 6-7 weeks. This is via Weight Watchers so I am still eating fruits, veggies and even candy but less calories and I wonder if there is a correlation. I am still thinking I might have cut out too much of something unbeknownst to me and my body is revoluting? That is why I wanted to start at the GP with a blood panel. But no MRIs or anything past the EEG, heart monitor which were actually more for some vision issues that arose at same time.

Red- Yup, Weight Watchers both time. Basically I have really cut down on the junk food but otherwise my diet is business as usual. I am just eating less total and less fast food.

[OakLeaf]

(((((Amanda)))))

My dad's had a tremor for years, so I can definitely empathize with how tough that is. Sending good thoughts and prayers that yours stays away.


ETA: I am not a dr. etc. etc... and I'm only superficially familiar with the various diet plans... but IIRC Weight Watchers is low fat? Good fats are definitely implicated in neurological health. (As well as being important for weight loss... you may find that you actually lose more weight on a diet that's rich in good fats.) Maybe try an Omega-3 supplement like Udo's Choice or freshly ground flax seeds, or just try to get more good fats in your diet - cut out something else if you want to keep the same total calories?

[Miranda]

Aggie_Ama... I'm so sorry hun, that just plain ole sux.

I have several things that have weirdly fell apart with my 30-something body in the last 10yrs. One being an autoimmune/neurological disorder as well. It can be so frustrating indeed. The neuro docs are smart fellows, but none of them really knows what causes most of this junk, or what the miracle cure is.

For ME, just my lil humble op fwiw, I know that my symptoms increase, or come out of remission, with any stress to my body. Emotional/mental stress overduely, lack of sleep, getting my immune sys activated even with the common cold, etc.

With that being said, I know this is not what you want to hear, but losing weight is sorta a stress on your body. It kinda goes into a fast I think is one way to put it... aka a stress. Now, WW is a very healthy program. I've been on it before. I have also lost a significant amount of weight before at one time. I think I remember my symptoms flaring too. But, they cycled out. I dont' have the tremor issue... but other things.

Losing weight is a very good thing overall for your health. For some of my other issues, less weight is best. So, it's the balance of the evils. I have no real clue if this could be a possilbe theory. I hope your family doc can help with the blood work. The chemical imbalance might be a starting point too. ((((hugs))) Miranda

[Miranda]

(((((Amanda)))))

My dad's had a tremor for years, so I can definitely empathize with how tough that is. Sending good thoughts and prayers that yours stays away.


ETA: I am not a dr. etc. etc... and I'm only superficially familiar with the various diet plans... but IIRC Weight Watchers is low fat? Good fats are definitely implicated in neurological health. (As well as being important for weight loss... you may find that you actually lose more weight on a diet that's rich in good fats.) Maybe try an Omega-3 supplement like Udo's Choice or freshly ground flax seeds, or just try to get more good fats in your diet - cut out something else if you want to keep the same total calories?

OakLeaf.... that's interesting about the good fats. I never knew that about the diet and neuro health... but I live on those. DH was suppose to convert to the South Beach Diet way for his cholesterol, but *sigh* is non-compliant. I, however, follow some of the principles and am an almond eating monster, good fat freak. I would NEVER buy anything "fat free" ever again after reading that book. Fat free was the big fad I used to live by. Shooot... all they did was strip out the fat and dump in empty carbs to make it taste richer. I eat the low carb/high fat salad dressing, non-oily nuts (not peanuts, oily = not so good), etc. Maybe it's helped my neuro health without even knowing it. Thanks for that.

[Aggie_Ama]

Oakleaf- Honestly I feel like I cut out the full of sugar sodas I used to have and no drink Diet in moderation. I was already drinking diet though. I added fruit but subtracted fried foods (was eating 4x a week minimum). I still have candy and sweets so it isn't a complete absence of that. I just don't see the big arrow saying "silly put this back". BUt maybe the doctor can have a -ha moment. I did cut out nuts, maybe some trail mix instead of candy would help.

Miranda- Thank you so much.

The weird thing is last time when I initially developed the tremor it never leveled off. It amplified until I got good and drugged up on the anti-convulsants (Neurontin then Primidone). The doctors at Baylor were insistant that the weight loss was just a random coincidence but I can't buy that now. I was completely med free in December and weighed 165-170 but was also completely shake free. I am now a 155-157 and starting to tremor.

It was such an emotional roller coaster in 2004 and although I know Primidone works I don't want to be on the meds. I am really upset and nervous about if it will get more intense. It is just a terrible feeling to not be able to calm my hand or write a grocery list.

Hopefully the doctors will be a little more willing to consider my diet and changes this time. I did learn from the past and I am very stern with the doctors, they may have med school but that doesn't mean they don't have to listen to me.

[jesvetmed]

(((Amanda))): I wish you luck in figuring this out. How very frustrating. One thing I would recommend is that you ask to have your Vitamin D levels tested. Studies are showing tremendous links between low Vitamin D levels and neurological / neuromuscular diseases.

I know you live where the sun shines a LOT more than here in grey Washington, but it is still worth checking.

If you don't get any answers where you are, don't be afraid to look elsewhere... sounds like you've already done that once. Good for you. Only you can look out for your health.

Keep us posted.

[newfsmith]

Before going on WW were you drinking a lot of non-diet soda, and are you now drinking a lot of diet soda? It wasn't clear from your reply. Like MSG, a lot of artificial sweeteners may have neurological effects. Maybe you need to avoid them. Try to think of the actual changes in what you are eating, not what your weight is. You might find a clue there.

I agree that it is not fair that you seem to have a choice between weight loss and tremor. Maybe you can get your neurologist to refer you to a really good clinical nutritionist with experience in neurologic conditions. Are you sure you are getting enough B-vitamins? I really think you should consult with your neurologist again.

[Fredwina]

Another thing. I've been told BET is inherited. And yes, it runs in my mom's Family. Although it shouldn't start until you're in the 60's

[Aggie_Ama]

Newf- I was already drinking diet soda but also regular. I am not taking a multi-vitamin (forget), that is something to tell my doctor.

Another thing. I've been told BET is inherited. And yes, it runs in my mom's Family. Although it shouldn't start until you're in the 60's

Yup, my father is adopted with limited knowledge of his birth family (we know how his parents died, his grandfather died and he still is in contact with a brother) so we aren't sure if someone had it. No one in my immediate family or on my mom's side has exhibited a tremor even though it is something like a 50% chance of passing it on.

Three neurologists (including the Baylor team) have diagnosed me and also stated I was a rare early onset case my first tremor diagnosis was at 23 and my tremors started shortly after my 23rd birthday. It does happen to younger people with some regularity but it is still more often an older age condition and because of that many never are diagnosed as they think it is just "old age". I also at the height of it I had it slightly in my leg which is rare and slightly in my voice. If it is indeed flaring back up it has only started faintly in my right hand. My handwriting is definitely indicative that the punk is back but there are other things to investigate before I start popping anti-convulsants again.

[Fredwina]

it may be something in your diet/ daily regimen. I have to avoid caffeine

[TahoeDirtGirl]

The only thing I could see would be that when I did WW for a short time, it sort of encouraged you to eat packaged stuff and do the point thing. Not sure if you're eating packaged stuff but I would start looking at some of that. I try not to use any artificial sweetners because I realized it was driving my eating off the charts. I was always hungry! Hope you figure it out...