[Evonne]

It has been awhile since I last posted on this forum. Not much has changed since I last posted, but things have gotten worse as far as my upper body stiffness and tremor. I have had a horrible stiff neck for the last week. My upper body from my bra strap up is completely hard like a rock. It is so sore and it aches and burns. I went to Urgent Care and saw a different doctor. He explained that my muscles were in a state of constant spasm. He prescribed 10 mg. Valium 3 times a day. I asked if he had some time to go over some of my symptoms, mainly the tremor that I have. After examination, he stated that my tremor is NOT related to Fibro like my MDS suggested. He said he suspects essential tremor, intention tremor, or PD because of the stiffness and cogwheel rigidity. Cogwheel rigidity is pretty specific to PD, although some people with MS have it as well. He told me that if it is essential tremor or intention tremor the Valium will reduce the tremor. The Valium will do nothing for PD. He said that he isn't a specialist and he couldn't put a label on it for me. He asked me when I would be seeing the new Neuro. I told him that my appointment is November 13th. Just to remind you, I had been treated by the first Neuro that I saw for PD. He felt there was a 50% chance that I had it, but if I was helped by the medication, he would be more like 90% certain. I was on the meds for six months. My Neuro didn't feel that he was seeing enough of a benefit from me being on the medication and felt that there was more to what was going on. He suggested that I go to the University of WA and see Dr. Samii. I opted to see a MDS that was closer to my home. He is the one that determined that the tremor was caused by the muscle weakness that is associated with Fibro and he said that it was exacerbated by stress and anxiety. My MDS office closed in July and now I have an appointment with Neurolofist number three. This is all so confusing and frustrating! I can surely tell you that a lot of this stiffness improved while I was on the PD meds. The tremor reduced, but never completely went away. I am not sure what to think about all of this. Any thoughts???

[reverett123]

I just tried something that seemed to help. Try balancing a book on your head!

[Conductor71]

Originally Posted by Evonne

Now I have an appointment with Neurolofist number three. This is all so confusing and frustrating! I can surely tell you that a lot of this stiffness improved while I was on the PD meds. The tremor reduced, but never completely went away. I am not sure what to think about all of this. Any thoughts???

Yvonne,

Many of us feel your frustration! PD in its early stages can mimic other things, so it is really difficult to diagnose with a great degree of accuracy. I'm amazed that given the misdiagnoses stories and multiple attempts at diagnoses that they aren't beginning to develop PET scan technologies to confirm what doctors think is happening based on observation.

Also know that we respond to levodopa in many different ways. I'm lucky in that it all but makes my tremor disappear. I know that there are many members here who do not have their tremor respond to this drug. I have read here that Amantadine often works wonders for controlling tremor. It's not a PD drug, but a lot of us respond to it. Has your neurologist suggested it?

Laura

[lindylanka]

Hi Evonne,
My original dx was fibro, and meds for that did nothing for me, once dxed with Pd and on sinemet I improved but not enough for the docs who gave me a few years of runaround about whether it was or was not PD. Bottom line is without PD meds I am useless! Also had the rigidity in neck and shoulders, often a presenting sign of PD. Go with you instinct and what works for you, and try for something more definitive. If you still have some PD meds like sinemet you could try them and see whether you get any relief.......... In general PD meds help with a lot of symptoms if you have PD - but there are no guarantees that the symptoms will go away completely!

All the best in finding a solution,
Lindy

[Chicory]

Evonne-
I am sorry you have to go through this time of uncertainty. I know it is very frustrating. It took 7 years for me to get a diagnosis. I hope you can get some answers at your Nov. appt., but it may take more time. I hope you will like the new doctor and he will be willing to take the time to help you. I tried many neuros, but the one I have now said at the beginning he would help me find a diagnosis and he did. It was a slow process- going back every 6 months and seeing how I was doing. We think doctors should have all the answers, but they don't. Neurology is not an exact science. Doctors know more today than they did 20 years ago, but there is still a lot to learn. We still do not have a test for PD and PD presents itself differently in different people. I hope that your new doctor can help you in November. One thing you can try in the meantime, if you haven't already, is a heating pad for the stiff neck and upper body stiffness. I hope you feel better and will pray for you.

[jcitron]

Hello Evonne,

It's been awhile for me too. I've been lucky and not so lucky at the same time. I went back to school full time in September for music performance. I figured what the heck, I got laid off, and now it's time for me to do what I want to do. My neuro-psycologist is happy for me and excited I decided to do this now while I can. Physically I have good and bad days. The good seem to be better than ever, but the bad are worse than ever. I shuffle about the campus like a bug. It's great walking, but I've fallen up the stairs once. My legs froze on the second flight and flop I went. Thank God no one was around to see me! This incident last week was a rude awakening for me because this is the first time I've done this in public.

Your stiffness is horrible! I've had that and there's no way to get away from it. Have they tried something like Flexeril if you can take it? This is a hefty muscle relaxant that can bring down a race horse, but it really does work. I was put on this once for neck stiffness caused by stupidly sleeping with the fan going on all night on my neck. When I woke up, I couldn't move because of the stiffness and the unrelenting pain.

I hope your Neuro No. 3 helps you. The doctor thing is aweful because they treat the patient as though we're the problem and not suffering. Just because you don't fit the mold of being over 65 and have a constant bilateral tremor, etc. They'll treat you like it's in your head.

Here's a virtual hug to help you get better.

Get well soon.

John

[stevem53]

Originally Posted by Evonne

It has been awhile since I last posted on this forum. Not much has changed since I last posted, but things have gotten worse as far as my upper body stiffness and tremor. I have had a horrible stiff neck for the last week. My upper body from my bra strap up is completely hard like a rock. It is so sore and it aches and burns. I went to Urgent Care and saw a different doctor. He explained that my muscles were in a state of constant spasm. He prescribed 10 mg. Valium 3 times a day. I asked if he had some time to go over some of my symptoms, mainly the tremor that I have. After examination, he stated that my tremor is NOT related to Fibro like my MDS suggested. He said he suspects essential tremor, intention tremor, or PD because of the stiffness and cogwheel rigidity. Cogwheel rigidity is pretty specific to PD, although some people with MS have it as well. He told me that if it is essential tremor or intention tremor the Valium will reduce the tremor. The Valium will do nothing for PD. He said that he isn't a specialist and he couldn't put a label on it for me. He asked me when I would be seeing the new Neuro. I told him that my appointment is November 13th. Just to remind you, I had been treated by the first Neuro that I saw for PD. He felt there was a 50% chance that I had it, but if I was helped by the medication, he would be more like 90% certain. I was on the meds for six months. My Neuro didn't feel that he was seeing enough of a benefit from me being on the medication and felt that there was more to what was going on. He suggested that I go to the University of WA and see Dr. Samii. I opted to see a MDS that was closer to my home. He is the one that determined that the tremor was caused by the muscle weakness that is associated with Fibro and he said that it was exacerbated by stress and anxiety. My MDS office closed in July and now I have an appointment with Neurolofist number three. This is all so confusing and frustrating! I can surely tell you that a lot of this stiffness improved while I was on the PD meds. The tremor reduced, but never completely went away. I am not sure what to think about all of this. Any thoughts???

Hi Evonne..I think the fact that the pd meds improved your symptoms speaks for itself, especially when you said.."I can surely tell you that a lot of this stiffness improved while I was on the PD meds

Over the past 9 months Ive developed something in my right leg..Dystonia for sure..Then it started to shake, and my neuro said it was a resting tremor..Six months later it was moving alot more, and at that point he said it moved too much to be a tremor, that it had to be dyskinesia..So he put me on Amantadine 100mg 3X daily..It helps alot, but it doesnt completely go away..I was taking an extra Sinemet at night, and since Ive been on the Amantadine, Ive been able to completely eliminate that night time dose

[Evonne]

I was prescribed Amantidine my the MDS that I saw. I never took it because I had heard some horror stories about it causing hallucinations and stuff. I shared my concernes with the doctor and he told me not to take it. I think I tossed it out, If I can find it, I might try taking it because I am miserable beyond belief. Two months ago I walked into my GP's office and told him that I didn't care if I woke up in the morning...a subtle way of saying that I could care less if I died! I am now on Effexor 75 mg. for depression and anxiety. I am supposed to double my dose but I want to wait until I get used to the Valium first. Let me be clear...I wasn't really depressed until just before all of this stuff started happening to me almost three years ago. When you feel miserable and your quality of life stinks it is pretty normal to be depressed! Am I anxious? Yes, but who wouldn't be when you KNOW that there is something wrong with you, but you can't seem to find a doctor that can figure you out! I wish that I could swap bodies with a healthy doctor for just one day. Maybe then the Doctor would feel my pain and try harder to help me. At various times I have tried Robaxin 750 mg. 3x's a day, Flexeril 5 mg. 3x's a day, and now I am currently taking the Valium 10 mg. 3x's a day. The Valium doesn't do much except make me feel pretty drugged out...to the point where I don't really care about the pain. That is not a great option because I have a life to live and I don't want to live it stoned out of my mind! Plus, it is not getting to the root of the problem. I am 34 years old with two sons to raise and a husband to try and keep happy. That isn't going to happen if I am drugged out of my mind and disconnected emotionally. Oh, BTW, the Valium hasn't reduced the cogwheel rigidity or the tremor either. Just one more reason I think that I am dealing with PD. None of these meds have done a thing for my stiffness either. Both of my elbows are stiff and sore as well. When I was on the Mirapex I felt much better as far as my symptoms were concerned. The side effects of the Mirapex were not so pleasant...especially the OCD, swollen ankles and overspending money without any second thoughts. I have had TMJ for about twelve years. It is causing me a lot of pain right now. My jaw clicks and tightens and the pain radiates into my right ear. It has never been this bad before. It feels like my jaw is going to get stuck and that scares me. Honestly, I feel like driving to the the Neuro's office and sitting there until someone agrees to see me. They would probably think I am some sort of lunatic and call 911 or something! It is really amazing to me what living in this kind of pain can do to a person! It is constant, grating, and NEVER goes away.

Thanks for all of your thoughts and prayers. I need them more than ever right now. I will keep you posted on any new developments.

[Evonne]

Oh...I went looking for the Amantadine, only to discover that it was Artane 2 mg. instead. I am going to look it up on the internet and call my pharmacist and see if she says it is safe for me to take with my other meds. Might as well give it a try! I will let you know what she says and what I decide to do.

[jcitron]

Originally Posted by Evonne

Oh...I went looking for the Amantadine, only to discover that it was Artane 2 mg. instead. I am going to look it up on the internet and call my pharmacist and see if she says it is safe for me to take with my other meds. Might as well give it a try! I will let you know what she says and what I decide to do.

The Amantadine was one of the magic drugs for me. I take it 3 x per day. What a big difference that made in my overall feelings.

Good luck,

John