Could this be "freezing"?

[Gaijin]

I'm new to this forum, I have not been diagnosed yet. I had been misdiagnosed with Polimyalgia Rheumatica and treated with steroids and a biological drug for two years when I realized that my symptoms were getting worse and were not responding to the drugs. I am now awaiting a muscle biopsy to rule out myostitis but I'm pretty sure it's parkinson's that I have. My symptoms remind me of my mother's who was responsive to levedopa but had no tremor.

My appointment with the neurologist for the muscle biopsy results and hopefully a diagnosis isn't till April 4th so I have started of the B1 supplements, the fatigue has lifted but I still have lots of muscle pain at night which makes it hard to get out of bed which I have to do often as I have polyuria and nocturia. I am at 2.5 grams at the moment, documenting my symptoms in order to have them ready when I am diagnosed and Dr. Constantin is back.

The other day I was at the gym doing my usual routine with weight machines. I got on the leg curl one and it wouldn't budge at the usual weight I used, so I lowered and lowered till I had taken all the weight off and I still couldn't move it at all. Same happened in the leg extensor machine. Today however, I went again and tried, I was able to do the exercise just fine. I am wondering if this could be what is called "Freezing" in Parkinson's. My mother had it but only when walking, or so I thought.

Another strange one-off symptom I had was that I couldn't hold my toothbrush with my right hand, fingers werent cooperating. It only happened once. Wondering if this is also a sign of Parkinson's as I didn't think that symptoms come and go.

Walking is a real effort, either I walk like I'm drunk or if I concentrate to walk properly, it's painful and robotic.

Hope I am not breaking any rules by posting before I have a dx.

[yogabonnie]

Hi. I am following you everywhere you go. You have helped me so much. I hope you will get some answers here. And please keep on posting in PMR/GCA also. Good luck and as you can imagine (from all my posts) I have NO ideas or answers when it comes to any of our health issues but I can say keep on! Breath! ox

[Gaijin in reply to yogabonnie]

Thank you so much..i wasn't aware that I helped you in anyway, I thought it was tbe ornery way around!

I am preparing a post to explain on the PMR/GCA forum. I owe that forum so much.. I learned everything I know about health from there, that made it possible to realize what really ales me. Xx

[MBAnderson]

Do you have other symptoms you can describe?

[Gaijin in reply to MBAnderson]

My right shoulder is always painful, I always wake up with my right arm with pins and needles and very stiff finger. My right arm seems very heavy when I walk and doesn't swing unless I think about it.

When I wake up I feel like I'm coming out of a long coma. I have difficulty turning over in bed. I have to really think about moving, not sure if it's due to the pain or rigidity.

I was on a rowing machine which was broken and got stuck just as I was pulling back which made me fall off the machine onto the floor. I got on it again another day and I felt I couldn't find my balance. Not sure if this was due to fear of fling or true loss of balance. Sometimes when Im walking I slightly lose my balance.

I also have hip, groin,lower back pain which changes from place to place. I have dry eyes and mouth for which I was tested for sjogrens for, but the blood test was negative for it. My vision changes frequently, sometimes I can't seem to focus. I remember my mother had all different strengths of reading glasses and would change them as needed.

I have IBS symptoms as well and can't seem to find the cause even though I have eliminated grains and dairy.

I also had symptoms of orthothostatic hypotension but since eliminating my BP medication (I was taking hydrochloriazide) I no longer feel light headed after bending down. I am currently on no prescription drugs at all, my BP is within the normal range.

I am getting very clumsy in the kitchen, things drop out of my hand without any apparent reason, sometimes I get a sort of electrical shock in my right wrist when cooking or getting dressed. I can no longer use chop sticks which I had done since I was a toddler.

I think that's about it.

[MBAnderson in reply to Gaijin]

Thank you for the additional info, but I'm not going to venture a guess because some of your symptoms are common to PD, but some don't fit the typical mold. Problem is, there's no such things as typical.

Lack of arm swing, difficulty turning over in bed, freezing, difficulty staying focused, loss of coordination, loss of balance, stiff shoulder are often common in PD, but the others are new to me.

It might be too early to know if you have PD. It might be that you have the early stages of PD along with other conditions.

Since Your mother had PD And many of your symptoms sound like PD, I think you have to stay open to that as a possibility.

Not much help, sorry.

[park_bear in reply to Gaijin]

I have dry mouth as a result of Parkinson's - that is a possible Parkinson's symptom. I also have difficulty walking in close quarters like around the house, similar to what you described. When I get out on the trail and open up my stride, walking is much better.

Welcome to this forum, and best of luck getting everything sorted out.

[Gaijin in reply to park_bear]

Thank you for your welcome. I have very dry eyes and mouth, specially at night, my dentist was who suggested I get checked for sjogrens, an autoimmune disease that affects moisture producing glands. It's good to know that dry mouth is a Parkinson's symptom.

[Hidden in reply to Gaijin]

Gaijin,

Until you get checked for Sjogren's Syndrome and get confirmation on that diagnosis, I have found that applying aloe vera gel around the outside of my eyes on the lids, but "not in the eyes" is helpful and I have to use eye drops much less often.

For the dry mouth issue, I have written a post about it that you may find useful. Here is a link to that post:

healthunlocked.com/parkinso...

The replies within the post are also useful so be sure to read those too!

Art

[Hikoi in reply to Gaijin]

I tend to think it is due to our medication rather than our condition. I dont think PD causes dry eyes or mouth but not sure.

[Gaijin in reply to Hikoi]

ncbi.nlm.nih.gov/m/pubmed/2...

Dry mouth at least seems to be an autonomic symptom of PD. Not sure about the eyes yet. I am currently not on any prescription medication.

[Ramondo in reply to Gaijin]

If Sinamet tablets help you , your ailments ,or some of them could

point to PD. please keep us posted.god luck.

[Gaijin in reply to Ramondo]

I hadnt thought of trying the sinemet, thank you. The B1 has definitely made me feel better but sinemet would be a better test. My OH is a retired Neurologist ironically so I will ask him for a prescription. Maybe I can prove it's Parkinson's and cancel the muscle biopsy. When I read how expensive they are, I freaked out! I don't want to spend public funds if not necessary. So, thank you for the suggestion. I will definitely keep posting.

[JohnPepper]

Hi Gaijin. I don't profess to be a doctor or any type of medic. I have had Pd symptoms since 1963. In 1992 when I was finally diagnosed with Pd I had already got to the stage where I was shuffling. At that stage I had over 40 symptoms of Pd, although some of them could be other forms of one or more of those other symptoms.

The thing that gets me about Pd is that there is no cure and I don't believe that anybody is actually looking for one. I know they say they are and maybe somebody is. But there is far more money to be made by selling the cure to the drug companies who make these medications to treat the symptoms. Who would want to kill the goose that lays the golden egg?

If you contact me on reverseparkinsons.net I will send you my videos and as much info as you can handle on dealing with Pd at no charge. I have been medication-free and neurologist-free since 2003. As long as I keep on walking I remain that way.

You already go to the gym. I gave up going to the gym because I was doing too much exercise and was getting worse. When I started walking as fast as could for one hour, three times a week I started getting better. It took me eight years of getting better, not getting worse, before I was brave enough to come off my Pd medication. Let me save you a lot of that, at NO CHARGE!

[Gaijin]

Thank you, John. I have read your book and was fascinated. I have tried the walking and being aware of my movement. It makes a huge difference! It's quite difficult to do though. for any length of time and to walk at the top of my speed for 10 minutes will take me time.

Thank you for your offer, will definitely take your up on it.