Down to the Nitty Gritty

Just went to a neurologist and had an MRI. He showed me a lot of "old age expected stuff" but said nothing was wrong. The MRI was ordered to see if I had any significant reasons for having my gait problems. Which are essentially - I walk like a drunk. He said he could not give me any answers at all about that but said I didn't have MS. I thought that odd because I had been told one could not be diagnosed by an MRI for MS. Anyway, he want me to see an ENT which makes a lot of sense. I have known for a long time something was significantly wrong one day when I began to walk and began leaning forward, practically running and could scarcely stop. I bounce around the halls of my apartment building first one side of the hall to he other. I waddle, slide my feet instead of lifting them, and have fallen from losing my balance at odd times. I also get very tired and my legs turn to jelly. How can I get a definite diagnosis? I am a 78 year old female.

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  • An MRI will not diagnose Parkinson's ("PD") either. Did your neuro give you the standard in office examination / evaluation for PD? Mine did, and at the conclusion he said "you have classic PD" and he was right.

  • He didn't do anything I thought he would. I didn't do enough homework and didn't know what to expect. He did ask me to walk in front of him, I did, and he saw nothing wrong there. He did the strength test - mashing my arms down as I held them up, my legs too. So he and my daughter decided my core was really weak (no surprise to me!). I was told to go to an "balance exercise center" 3 times a week. That would cost $75.00. Can't afford that - I am being stubborn because I know I could find exercises on the internet but have just been too tired and lazy. it's crazy, it's like I am having to prove to the others that I am not faking - I really am sick! I'm not just trying to skip school!

  • Wow, I thought there was a standard examination but now that I have looked it up apparently there is not. So my neuro really had it together. Here is a description of what a PD exam should encompass: parkinson.org/understanding...

    Strength or lack thereof is not a symptom of PD.

    Let's see what we can do right here and now:

    Do you have tremors, tightness, or cramps, particularly of either arm?

    Any trouble with a foot on the same side - toe cramps or dragging the foot?

    Do you have any trouble with chronically tight or stiff muscles particularly on one side?

    How well do you sleep? Compared to say, 10 years ago?

    Has the volume of your voice decreased?

    Has your handwriting changed?

    Has anything changed regarding swallowing pills over the last years?

  • My handwriting is scarcely readable.

    Very tight shoulders

    Ache in right arm, but not my leg or foot.

    My sleep is not as good as before.

    I have no problems swollowing many pills at one time...but frequently choke on saliva.

    No tremors.

  • Tremors are the hallmark of PD although some PWP do not have tremors. The problems are worse on one-side. If both shoulders are tight that is likely not PD. People with PD tend to have handwriting get tiny. Sleep not good is a PD symptom, ache in right arm and choking on saliva could be PD symptoms, but overall your set of symptoms, including what you related up top, does not strike me as a good fit for PD. Sorry I am not more help. Did your neuro suggest anything?

  • Only that I visit a ENT. I am trying to get a referral now. It would be nice to have inner ear problems, if that makes sense! Much better than PD.

  • Given the symptoms you have mentioned it could be balance related. There should be simple ways to test your own balance but did not succeed in finding that online.

  • My husband gas had PD fir 10 years and dies not have a tremor!!

  • My husband has advanced pd but he freezes no noticeable tremor.The Neuro said he can feel a resting tremor which is not what you would notice by looking at him. Can not walk any more his feet are glued to the ground. No tremor does not rule out PD. They rule out all other posibilities. As more symptoms developed they make a diagnosis. Weakness on left side was a clue. It took a while and than shuffling and freezing occurred.

  • Yes I know that not all PD patients have tremor, which is why I inquired about other symptoms. I do not have noticeable tremor either, as long as I take my usual medication.

  • Park-bear you are dealing misinformation here. Tremors are not necessary in PD. It is possible to have PD without Tremors, I did for many years and thus went undiagnosed, and so have many others. Also the aches and tightness do not necessarily need to be one sided. Generally one side is worse than the other but it is not a determining factor and should not be considered such.

  • I made changes per your objections.

  • You sound like me. I only started having tremors about a year ago and I've had all the symptoms you speak of for several in fact many years. That's the problem, Tremors are so tied to PD diagnosis that doctors are reluctant to even think about it without Tremors. The fact is you can definitely have PD without having Tremors. A Datscan would be a way to get a true diagnosis, not an MRI.

  • A MRI will diagnose MS though. It shows lesions if you have MS. That is how MS was eliminate from my possibilities. I believe that is why they do an MRI when checking for PD, to eliminate MS and other diseases that do show up in the MRI.

  • Look up NPH symptoms and see if any of those look familiar. The doctor thought my Dad might have Parkinson's because of gait and balance problems, but ruled it out and diagnosed him with NPH. He'll be having surgery soon to drain the fluid. It's supposed to really help. He is 83.

  • I will have my neurologist look at the MRI film again with this in mind. I really don't think that I have NPH but would be good to rule it out. Thanks for giving me the information about NPH. I appreciate it.

  • Normal Pressure Hydrocephalus (NPH) does not seem to fit because glenellen did not mention two of its three cardinal symptoms listed below, namely dementia or incontinence:

    "Significance of the problem--Difficulties in diagnosing the cause of dilated ventricles:

    Patients with dilated ventricles are not all suffering from hydrocephalus. Other diseases such as Alzheimer’s and Parkinson’s diseases can also induce a dilatation of the ventricles and create similar symptoms (gait difficulties, dementia and incontinence). Here, the mechanism of ventricular dilatation is associated with reduced brain volume due to tissue atrophy, allowing the ventricles to dilate and fill with CSF. The similarities in the symptoms and the abnormal size of the ventricles between NPH and other disorders makes NPH patients difficult to identify, leading to misdiagnosis. This is a real challenge for the medical community. It is extremely difficult to differentiate them on the basis of the neurological deficits and measuring ventricular size using conventional medical imaging techniques . . . "

    Reference: brainfoundation.org.au/wp-c...

  • I appreciate the information you provided and your opinion. I will take a look at the link you provided. My dad only has the one symptom of gait/balance & does not have the other two, but the doctor still believes he may have NPH, enough for us to talk to the surgeon on Tuesday about putting in a shunt. He had a spinal tap to see if he improved any & he did improve a little for a short time, but they could only remove 1/2 the fluid they wanted. If you have any other advice, please let me know.

  • NPH suddenly resolve itself suddenly. My sister has many of the symptoms. She simply could not hold her urine. Than one day it was as if it never happened. The episode lasted about 3-1/2 weeks. I will read from the above link - I may find some answers there. Thanks!

    also, notice I can no longer type properly. CAN NPH suddenly resolve itself. Duhh!

  • Hi,

    Did your dad's Neurologist diagnose NPH from an MRI alone?

    Also - does your dad have any eye problems? I think my mum either has PSP / CBD or NPH. She has gait/ balance issues - falls / memory probs / incontinence / slight speech slurring and slight eyelid / gaze issues. They are not sure what it is yet. MRI and DaTSCAN normal.

  • Hi sennen7. My dad's doctor did an MRI first & then did a spinal tap. They were supposed to get 30cc's of fluid to see if his gait seemed better but they could only get 15. He did see a tiny bit of improvement but that was to be expected because of only getting 1/2 the amount. As far as eye problems, he did have cataract surgery in both eyes a few months ago & he has the start of macular degeneration, but I believe that is just because of his age. The doctor never indicated they were related. Does this answer your question?

  • An MRI is used to diagnose MS, not PD. There are four cardinal characteristics of PD: tremor, gait, rigidity, balance. In addition nearly everything you named is on the expanded list of symptoms of PD. The doctor you should see is a Movement Disorder Specialist. Once you see a MDS, you'll understand what you have and will be able to develop a course of treatment that should show some returns. Best of luck.

  • I second everything Nancyclist has said but would add that that 30% of people with parkinsons do not present with tremor and may never develop that particular symptom

  • Thank you for the advice. My insurance company is tricky and I will probably have to jump through some hoops but it only stands to reason that I should see a MDS. I know with any disorder it only benefits one to be in the best shape as possible to weather the storm. I need to exercise as the neuro said, but I don't think having a strong core will not solve all my problems as he seemed to think.

  • Good advice NanCyclist

  • The defined diagnosis of Parkinson's disease or Parkinsonism is a DAT Scan, Was the MRI normal? MS is diagnosable on MRI Parkinson's disease isn't

  • Isis6361 -- YUP

  • The MRI didn't show any lesions as in MS. It showed that my brain had atrophy and (my memory is so bad) but it was major ischemic disease. The way I understand it is not brain bleed but tiny little strokes in the blood vessels in my brain. It showed on the MRI as white patches. My daughter has the actual disc showing all this and the printed diagnosis so I can't go look it up. I noticed for the last month or so that when walking I strike the surface with my left heel first, almost making me look as if I have a limp. It's something new - sound familiar to anyone?

  • Only an autopsy will yield a "definite diagnosis" of Parkinson's; however, an office visit interview and clinical evaluation by a competent Movement Disorder Specialist (MDS) is the next best thing.

  • LOL I will jump right on the autopsy option. I just want to know so I can whine and get away with bad behaviour! (Joking of course!)

  • To get a diagnosis of Parkinson's you might need to get a neurologist that knows what they are talking about.

    This one doesn't seem to be much use at all.

  • 'Ya think? lol My sister went to him and I found out more on the internet than he was able to tell her. She was not told about arthritis of the spine causing headaches.

  • It would be useful on this site if you said which country you live in. The route to diagnosis and treatment is not the same worldwide.

  • I am from Houston, Texas

  • Before I went to the UAMS Medical Disorder Clinic, I went to a general Neurologist. He told me that DatScans are not done unless you are in a trial....WRONG! At the Medical Disorder Clinic they do them all the time if the diagnosis is questionable and in fact use them in a series over time to check progression. That same general Neurologist said that pain was not a symptom of PD. MAJOR WRONG! I am so happy I'm now being treated by a doctor that knows and specializes in PD.

  • I am going to have to catch up on terminology - namely DatScans? I have learned a lot here and at the major Parkinson web site.

  • People can present differently with Parkinsons. Mine was brought on or unmasked by a knee replacement. I had tremors immediately afterwards but they disappeared after a month and now I only have them occasionally at night and to a very minor degree. I am about a year and a half post diagnosis. I understand some folks never really have tremors. My physician noticed I was moving more slowly and that my steps were smaller. I was also having trouble with my right hand, was pitching forward a bit and my handwriting had deteriorated. A neurologist and a movement disorder specialist both diagnosed me with Parkinsons after putting me through some movement test. My muscle strength is still fairly strong but I have a number of pre existing back problems that bother me more than anything else. Good luck!

  • Thank you. I hope I can find a movement disorder specialist.

  • See a neurologist that specializes in movement disorders.

  • A couple of years ago my GP said I was showing symptoms of MS and sent me to a neurologists for testing. I too got an MRI and it was clear. I was then diagnosed with low B12, which I did have -- but what the neurologist did not see was PD which was the real problem. Just this past August I was diagnosed with PD as a result of a positive reaction to the L-Dopa medication.

  • What made the Dr. decide to give you L-Dopa? Did he continue to suspect PD?

  • I finally did develop tremors and I was pretty obnoxious that he was not helping me at all after years of complaining about my symptoms. He had me pegged as a hypochondriac I'm sure. I had been researching -- as you are -- on all sorts of possibilities and when I developed the Tremors I looked at Parkinson's. I read how a positive response to L-dopa (dopamine replacement) is pretty much a positive test for Parkinson's....so being the obnoxious person I am, I insisted on it, and he capitulated. When I went back to him after only 1 week the difference was unbelievably remarkable. In fact in only one day of taking Carbdopa/Levodopa (Sinemet) 25/100 3 x a day, my rigidity relaxed, my depression lifted, my tremors subsided and I was so much better it was like a miracle. That's when my doctor realized I was not a hypochondriac....I've since dropped him ....long story.

  • Wonderful! I really admire determined people especially when it comes to their health. Darn it, with your body, you know what you know!

  • glenellen, I had an MRI done and I don't think that this is really out of the norm though it does not confirm a PD diagnosis. My Movement Disorder Specialist / Neurologist from Cleveland Clinic in Miami suggested the MRI to rule out a tumor or anything else that may cause tremor (my dominant symptom). This seemed like a prudent course of action to me. He also suggested a datscan but was clear in his diagnosis of PD. My migraine neurologist read the MRI (He reads all the MRIs from the small local clinic) and told me he believes I have had a silent stroke in the area that would cause a tremor right hand. 2 Movement Disorder Specialist / Neuros, including the Neurologist from Cleveland Clinic, subsequently disagreed saying that could not be determined by the MRI. I will ask a third Neurologist on Monday. Frankly, I am getting tired of seeing neuros but you do learn from each one.

    I have not had a datscan yet but that is because they are now usually required in a clinical trial - which means they are free - and also I do not want to get a datscan unnecessarily. So I am waiting to enroll in a clinical trial to get the datscan.

    So my advice, for what it is worth as I am not a clinician but only a patient, would be to see another Doctor a Movement Disorder Specialist / Neuro. When you do, ask about clinical trials. Ask about all the medication options. I really hope you feel better.

  • Thank you for telling me your medical roads to discovery! I looked for a Movement Disorder Specialist and I found several at large teaching hospitals in Houston. I will see an ENT this coming week, and don't expect much, but can't rule anything out. Next I will start wrangling with insurance company for approval to see a Movement Disorder Specialist/Neuro.

  • If you are on Medicare getting approval to see a Movement Disorder Specialist should not be a problem at all. You will need a referral from your Primary care doctor.

  • Teresa, I have a medicare (Texan Plus). I think I can get a referral, but my regular doctor left the practice recently after having been my GP for ages. I have chosen a new doctor and will see her for the first time on the 8th. I will see an ENT on the 12th. After that time, with another visit, I can tell her about the report from the MRI - and try to establish a rapport with her and explain that I would like to see a Movement Disorder Specialist and hopefully get a referral, then on to an approval. The only specialist I have found on the internet is about 42 miles away, but would be worth the drive for some information.

  • I do not tremor however have a lot of the other sy,proms such as rigidity, pain in legs,loss of smell,sometimes es balance is off fatigue and anxiety in social Setting among a few. To find do a doc has been difficult. Doc can be an expert in their field, but you are an expert in how you feel. I told of e doc that you would get that I'm I'll if I were tremoring but this is frustrating for you but also for me. It wasn't until I went to a teaching g hospital that I got help. E en then doc did not think I had pd but gave me prescription for carbolevo! It worked so now he thinks yes I do have pd. Also he is noticing changes in my gait and other evidences of pd. Doc is a movement specialit.it took time for these doctors to get to know me. Wish you the best.

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