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Internal tremor?

ConnieD
4 posts
Apr 24, 2007
11:57 AM
I've had "internal" tremor sensations now for about 10 months. Three neurologists have examined me and when I explained it to them they've not been able to see it or told me it was just "jitters caused from stress/anxiety". Last night I had another brain MRI to check for lesions, my first MRI there were no lesions. Finally my tremor was "seen" as during the MRI the radiologist repeatedly told to remain still and relax as the machine was picking up movement. I was as still as I could be and the more I relaxed the worse my tremor felt. The radiologist was very understanding and had before the test quizzed me extensively on my tremor, numbness, and migraine symptoms. We discussed how my doctor wanted my first MRI to be compared with this new MRI looking specifically for lesions. He came into the room after the technician removed me from the machine and told me that everything "looked" fine and he would have his report to the doctor by the end of this week. I'm taking it that was his informally telling me that I still do not have any lesions.

Have you had internal tremor? How long was it "internal" before it quit and/or developed into visible tremor? Extremity numbness and/or numbness in your face? I have numbness on the left side of my face. It feels like the skin is taunt/stretched and less flexible- could this be having a "masked face"? Can masked face happen on just one side as my right side still feels somewhat normal? I understand tremor and numbness can be signs/symptoms of PD, but how typical are they with YOPD/EOPD?

Thanks! Connie

AnnFerg
10 posts
Apr 24, 2007
1:56 PM
I too believe I have internal tremors in my hand occasionally.
Also, I have that same tight feeling on the left side of my face. I have been told this is masking by others on this board, but my doctor has not confirmed this.
I am in the process of confirming a parkinson's diagnosis.
Have you seen a movement disorder doctor?
judi
5 posts
Apr 24, 2007
3:22 PM
That is how my PD symptoms started. It would drive my crazy, I felt like I was "plugged in" AND just took 20 diet pills. My doc thought it was aniexty, so he prescribed me LORAZAPAM which is anti-anxiety and anti-seizure. It works SO well. Take 1, and ten minutes the "internal jitters" are gone.

Judi

Last Edited on 24-Apr-2007 3:23 PM

ConnieD
5 posts
Apr 24, 2007
3:30 PM
Hi Ann-

The last MS neurologist I saw in November said he was 99% sure I did not have MS and referred me to a movement disorder neurologist. She finally saw me about a month ago and after my "normal" exam she advised me I was "too young" for my "problems". She advised me to have a repeat MRI to check for MS again as it would be more likely, and then that I needed to go back on antidepressants to calm my stress/anxiety "jitters" down (ie my tremor that can't be "seen"). I decided one appointment was enough with this doctor- she completely wasted my time (and the only movement disorder neurologist on my insurance program). My primary doctor rescheduled the MRI for me. Two weeks ago I caught up with a PD patient here that knows a friend of mine who has MS. This PD patient gave me the name of a Polish doctor in his 80's here that specializes with PD, unfortunately he's not on my insurance program. I will wait for the report from this MRI last night to see if I do have lesions that have developed in the past year. If no lesions I will make an appointment with this PD doctor to see what he has to say.

Just have to say it was such a RELIEF to finally have someone in the medical profession "see" my tremor is real- that I'm not making it up, that I'm not experiencing "jitters" from stress.

Good luck with your diagnosis- crazy how long this process can take sometimes!

ConnieD
6 posts
Apr 24, 2007
3:43 PM
Judi- you've been diagnosed with PD? I dream of even getting any kind of medication to calm the shaking down- right now the doctors say they don't know what's wrong with me so they won't give me anything. The movement disorder neurologist wanted me to go back on Prozac, which I took for six months or so through the beginning of my daughter's pregnancy in 2003. I just knew that was her wanting to shut me up and so I would quit wasting her time.

My primary doctor tried me on Cymbalta a year ago when my first tremor symptoms started as he was sure I was having anxiety attacks. My heart started racing- 120+ bpm, and I swear I was having problems breathing because of it. I stopped it and still it took about 6 months for my heart to beat normal again. Now I'm hesitant to take any anti-depressant because I'm worried that my brain is messed up and that's why I had the adverse reaction to the Cymbalta.

Glad your anti-seziure med is working well to control your internal tremor.

chris74
1 post
Apr 25, 2007
12:25 PM
Hi to everyone. I feel strange emailing on this board, as I do not have a dx. but, have very similar problems as you all. Actually, because of my age and lack of visable tremor the neuro.'s keep checking me for MS but, I have NO lesions. Anyway, I have a run down of symptoms and would SOOOOO appreciate anyones help with explaining them to me....are they PD related or not??
Internal tremor (no external unless I have my chin resting on my hand for awhile), feeling like I am walking through water but no one else can tell how slow I feel, facial tightness to the point of being hard to pucker up but, again, no one else can tell, blurred vision that comes and goes, bladder hesitancy, feeling like I am not swallowing well even though so far food and drink goes down fine, forearm, writs, fingers PAIN, neck, shoulder and upper back tightness and pain, NUMB lips BURNING tongue, Shock-like twitches, jumping thumbs, FOGGINESS like I'm in a freeze frame mode (watching myself in slow motion: this is very weird), lower eyelid twitches, nostril flares, neck tic, SEVERE headaches and nausea and many other weird things. Oh, that finger-tap test is hard to do with my bad side : it gets slower and slower as the arm burn gets worse and worse (is that an indicator of bradykinesia??)
All this just stinks. I have been to soooooo many neuro.'s and no answers. This all started about 2 years ago with tingling sensations.
I have sponken to some wonderful YOPA members over the phone and just decided to post here to see what others make of my symptoms. ANy comments would be so helpful, Chris
ConnieD
8 posts
Apr 25, 2007
2:05 PM
Sorry to hear you are still waiting for a dx too Chris. I agree that it stinks to be having all this and not one doctor getting anywhere near a diagnosis. Sometimes I feel like they'll test me away for years to come bound and determined that because they think it's MS it'll turn out to be MS. I have no lesions either- anywhere and lumbar puncture also came back negative. One neuro doc said he was pretty sure I did not have MS and that was his specialty. Still, we wait on and try to be patient all the meanwhile (at least for me anyway) shaking, twitching, burning, cramping, numbing away because the doctors we have seen say they don't know what's wrong (either that or we're "normal" because they can't see anything) so they won't prescribe any medication to even try to help calm the symptoms down. Frustrating, but as my friends say- this is why they call it "medical practice" because often many symptoms relate to many different problems. If only this could be more cut and dry- ha! I like this board too- hang in there!
chris74
2 posts
Apr 25, 2007
4:11 PM
Thanks Connie! Did you say they put you on Prosac when you were pregnant? Did your symptoms start during pregnancy? Mine did (almost 2 years ago with our last baby); they said I was anxious/depressed too and gave me the dx of fibro which really means they don't know what the hell you have.
I am only 33 anf am so scared that I am dieing from what ever this is. Do you feel foggy a lot or disconnected? Can you relate to the "freeze frame" feeling I described before? Please tell me more of your symptoms. Thanks, Christine
Susan
10 posts
Apr 25, 2007
6:16 PM
Christine- I'm 35 with 2 young girls (4 & 2)and some times I just don't feel like having a phone conversation b/c I'm so "foggy and disoriented". It's a struggle to get my words out and I feel like they won't make sense anyway. I also feel like I have a hard time focusing on one project at a time. Then while multi-tasking, I get mixed up and my hands sort of freeze b/c they can't keep up with all the little jobs I'm doing.
Then all that makes me mad and I go and find something else to do.
It is the Mirapex or the PD??

P.S.- I'm always looking for moms w/ YOPD. Please contact me if you would like to talk sometime. I'd love to hear from you.
sbrister@erac.com
Thanks
~Susan

ConnieD
9 posts
Apr 26, 2007
9:40 AM
Hi Chris and Susan!

I'm 36 with a 6 yr old son and almost 3 yr old daughter. When I look back on my symptoms I really started having problems in my teens. Severe migraines daily and then by my mid 20s I had "TMJ", skin and dandruff problems too. Then when I was about 29 (a year before my son was born) my migraines completely stopped- like a light switch (no joking!) they quit happening. At 32, my husband and I were trying for our second child when I had a miscarriage. I started having severe shoulder and abdominal pain and my doctors immediately thought ectopic pregnancy which wasn't the case, but over a 5 month period the pain worsened and I became extremely stiff and sore- could barely move-felt, looked and walked like I was 90 and needed a walker... and that's when my depression set in. I was checked for endo & PCOS, ulcers- all negative and finally told I had Fibromyalgia. I was put on anti-depressants daily to control the pain and constant fatigue/malaise and depression feelings. At 33 I seemed "normal" again (although I've never been able to walk fast since then) and we wanted a second child so my doctor put me on prozac- I did that until I was 30 weeks pregnant. After my daughter was born the FM seemed "gone" to me, I had long gotten over the depressed feelings so I held off of going back on the meds. Then just over a year ago (at 35) the tremors started. That's when my doctor finally sent me to a neuro as he was sure it wasn't FM- all my symptoms had changed and he said now weren't common FM, but the rapid "onset" he was more readily to contribute to MS. After seeing two MS neuros and having them say not MS, I brought up PD (now having researched about every neuro condition possible) and he said no I was too young and didn't have the "pill-roll" tremor.

Since my symptoms started progressing this past year I've had the internal tremor- which I first noticed with my vision, then short soft patter muscle spasms/twitches (3-6 cycles) in the left upper eyelid- they went on forever- spread to the right side of my face and finally sporadic locations about my entire body. Now I have none of these soft muscles spasms anywhere on the left side of my face, the skin feels taunt/stretched ("masked"?) and I notice my left eyebrow is higher than my right and doesn't move when I smile (even the left side of my lips have issues). Maybe this is why I often bite the insides of my cheeks and lips when I chew gum or even eating sometimes? I have tinitus (ringing and pain) in my left ear and on/off left eye pain. I've had memory (forgetfullness and having problems tracking thoughts and conversations) - I can't figure out where this is coming from as now I get in rooms where there are multiple conversations and/or loud sounds and I lose it- I can't process the conversation and end up getting frustrated and tuning out- withdrawing and/or just wanting everyone to quit talking for a minute for my head to stop freaking out- I guess maybe this would relate to the "freeze frame". About 8 months ago I started having feet cramps- my right first (weird as all symptoms had started on left side) with my second toe separating from my big toe and jerking up- extremely painful and often happening in the middle of the night in my sleep! In January of this year my left foot started having the same cramps. Oh, and besides walking slow, once in a while I get glitchy on stairs- can't get my feet to move- but it's very brief (sometimes I just don't get my foot raised or lowered quickly enough and trip up or quickly down the stairs). If that makes sense.

My fears are maybe I have ALS, but from what I read the symptoms are more painful twisting/distorting type muscle contractions- the only painful I have are in my feet- which I've decided are foot dystonia which I read is quite common with early PD. We've had three people die of ALS this past year, one lady 42 years old and they highlighted her story in the news and it was just horrific what she went through and how quickly- she lived 5 1/2 years after being diagnosed. That disease scares me greatly whereas I think PD may be embarrassing and/or frustrating, but not likely to result in death. I'm not scared of dying- scared of leaving my children at young ages- how would their lives turn out without me, how would my husband raise them alone- those kinds of thoughts.

I wish I had a dx of any kind as to my "real" medical condition just so I can learn how to move forward and deal with what is happening with my body... this is what frustrates me most. I can deal with the pain, the spasms, the tremor- I don't care how and/or what people see or think- I just need to know how to care for myself- how and what to tell my husband and children to help them understand how to help and care for me.

That's my story. Feel free to email me anytime too.
donalddouglas (at) comcast.net

chris74
3 posts
Apr 26, 2007
4:33 PM
Thank you CONNIE! You sound DITTO to me. Even the same thoughts about all this. I, too, feared ALS for the first year of symptoms now I'm in year 2 since the start and still no DX.
My heart goes out to you so much; I feel every ounce of your pain, anxiety and worry.
I am afraid of leaving my beautiful family. My sweet little 4 year old heard a radio comercial about Fibro. and a new med. for it and said, in the car, "listen mommy please listen they can help you get all better; it's going to help all your symptoms go away; a medicine for fibromyalgia. call daddy and tell him."
This is ruining my perfect family.
What is this punishment. I am a good person, as I'm sure you are, and all I want is to raise my family.
I just got back from the dentist because of this excruciating pain in my face, on my bad side of course, and I have to have a root canal and a wisdom tooth taken out but, she said all my face pain and tightening is called tringemal neuralgia steming from whatever neuro. condition I have but, that tringemal neuro. comes from the brain.
WE CAN"T WIN! I just told my husband. We now have financial woes because of all the doctors (especially Mayo clinic- who dxed the FIBRO)!

Do you have a positive ANA? I do but, nothing specific that's why they said fibro.
I've also been put on antidepresants and they don't seem to work and especially don't take away my physical symptoms.
I'm really worried I have a Parkinson's plus thing because of the automatic malfunction (hypersalivation or dry mouth, my blinking gets slower, my face especially my lips will go numb and I just get really slow motion like and a big FOG comes over, intermittent blurred vision, urinary hesitancy, slow heart rate, etc.).
Yes, please email me too: cdcruse@hotmail.com.
I would love to hear from you.
We have one of the best MDS in the nation here (MUhammad Ali PD center) but, they told me no PD.
Anyway, chat soon and thanks so much I am praying for you this moment, Christine