Can CFS be misdiagnosed as Parkinson's?

Discussion in 'Fibromyalgia Main Forum' started by teller7, Apr 12, 2009.

  1. teller7

    teller7 New Member

    Wow you've changed the message board. I hope I know what I'm doing here. Quite awhile ago I remember, I think, asking this same question. Mikie answered it but I can't remember what she said. My PA is convinced that I have Parkinson's. Also my neurologist but he's not quite sure. And he doesn't believe in CFS. You know how you feel when you run out of gas so to speak. With me if I do too much I'm like a rag doll and I have to lay down to recharge. Sometimes for days. I was diagnosed in 2003 with CFS at OHSU in Ptld. I was having a crash (that's what I call running out of gas) and my PA told my husband to increase my sinemet that the neurologist has me on. The Pa said to make me take 8 a day and that I was having a Parkinson's flare. I kept shaking my head NO and he got mad and said I'm the dr here and I want you to listen to me. I took the 8 for about 4 days and it about killed me. I went to the neurologist and luckily had a crash. He was very concerned and said that that crash was NOT a Parkinson's symptom. He said it could be caused from the viruses I had 7 years ago. But he wouldn't say CFS and I didn't talk about it to him because he wouldn't listen anyway just like my PA. He told me not to take more that 2 and a half sinemet a day. Talk about drs making us confused. It almost makes you want to give up trying to get help from them. My question is - Mikie if you're still here on the message board could you tell me again about this subject. Also where can I look on the internet to find the info so I can take it to the drs and shove it in their faces and make them read it? The frustration is really getting to me.

    If anyone else has any input about this I would appreciate hearing from you too.

  2. But, could you maybe detail some of the MAJOR, & Specific symptoms, that are making your PA SOOO sure it's Parkinson's... and making your neuro at least consider it?

    Also, any/all neuro tests they've done on you?

    (MRI/MRI, EEG's, ENG,....

    Evoked Potentials- (SSER, BAER, sorry, I forget all the types- I've had SSER, "somatosensory evoked response")

    EMG (lots of needles, stuck in each different seperate muscle of the limb being tested, & electricity of sorts, being passed through, (sounds barbaric- and it IS unpleasant, but, tolerable)..

    I too can be (and usually am) bedridden for days, after 'simply' attending a family function (hubby's family is LARGE, and very 'social' (I get overwhelmed from ALL the voices, kids, etc, NOISE), and their 'dinners' can last 4,5 hours, sometimes MORE... but, hardly ever under 3.5-4 hours...

    I almost always get SICK, because... my sister-in-laws BOTH will take their children all over God's green earth, regardless of WHAT the kids have at the time. My poor nephew (4 yrs old now,) last x-mas, had been up the entire previous night, vomiting, fever, the FLU, and they still bring him to my MIL's house for x-mas (they live next door, "up the hill").

    Even if I don't get 'sick'... in terms of an actual active 'bug'... I am bedridden, sore, swollen glands, burning skin (having that again right now, like every single little (?? for lack of a better term) "Nodule" is inflamed & sore... not just my 'lymph nodes' & 'glands'... throughout my back, ribcage, etc... I hurt, like a DEEP 'sunburn'... almost..


    I have a cousin, (male), who, at 28 yrs old, was told "they" (A LOT of specialists/neurologists, etc) were "pretty sure" he had Parkinson's disease... and the "final" word(s) on it, to him were this:

    "We'll know in 5 yrs" (UHH??!! Talk about not having Peace of MIND!)

    They'd told him he either had PD, or he'd "had too many blows to the head" (he has SEVERE seizures, and many other health problems- he was a prison guard in the Marines, in places like Cuba, & other countries, as well, as working in Prison's all over the state, here..)

    So, my cousin was put on PD drugs, in combination with tons of anti-convulsant drugs... and right at that 5 yr area or so... they told him he did NOT have PD... & also did that 'brain mapping'... to see if he was a candidate for surgery, to try & stop his seizures with the device they implant, that helps control/stop electrical impulses, that cause seizures. (He was not a candidate, unfortunately)

    Anyhow, just from going by HIS experience... they sure don't seem to have extremely definitive tests for Parkinson's STILL... I mean, he was 28.. and they told him, it *would be* extremely rare, at his age (I think Michael J Fox might disagree)...

    But, said the 'normal' average age of diagnosis was around 55...

    So, my cousin went through the 'it is,' 'it might be' 'we think so' 'we'll know in xxx years" thing with Parkinson's...

    My aunt, and I both went through the same thing, with MS... she's STILL going through it, for all I know... we lost touch..

    I'm labeled in all my records as having MS, but, my NEURO, I do not think, has *written* it... maybe as "probable" in my early records... my first MRI report said MS... but, my neuro is *cautious* with 'handing out' diagnosis' he believes in Fibromyalgia, but, never mentions it, since that is not really 'his area'.. we just do MRI's basically when he feels like it... or if I'm having really bad, new, odd, long lasting symptoms,

    If you can detail your symptoms, tests, etc... I will sure do my* best, to offer any help, if I'm able to.

  3. ladybugmandy

    ladybugmandy Member mentioned that you had some virus 7 years ago...i was wondering which virus that was. epstein barr virus encephalitis can sometimes present as a parkinson's-like syndrome. i wonder if low-grade, chronic EBV (one of the possible causes of CFS) could also result in this.

  4. Nanie46

    Nanie46 Moderator


    It is important to pass along to you that both CFS and Parkinson's can be undiagnosed chronic Borrelia burgdorferi infection (lyme disease).

    Please post for me on the lyme board if you would llike more info.

    Read the symptom list in the back of this booklet:
  5. ladybugmandy

    ladybugmandy Member

    nanie you sound like me...i think it's always gotta be a virus and you think its gotta be borrelia! lol
  6. Nanie46

    Nanie46 Moderator


    ...and I always thought for 21 years that my FMS was caused by a virus and then discovered it was a Borrelia infection! lol
  7. ladybugmandy

    ladybugmandy Member

    21 may i ask why you thought it was a virus? mine started with a viral infection (EBV) so thats why i strongly suspected virus....
  8. 3gs

    3gs New Member

    i have been told i had parkinsons and ms. went on all the drugs for both.

    didnt have either tho had syptoms that looked like those. i feel i have lyme. every question on questioaire is a hhigh yes for me. still looking for a doc.
  9. Nanie46

    Nanie46 Moderator


    I initially thought my illness was caused by a virus because it started with a flu-like illness with a very sore throat. At the time...1987, I went to my family Dr and he told me it was viral and therefore did not give me antibiotics.

    I was never the same after that. When the flu-like illness resolved, I had a constant ache in my right hip. After a number of weeks I had an acute episode of throbbing pain in every joint in my body that lasted a couple weeks.

    When that resolved I was left with the chronic muscle pain, stiffness, fatigue. sleep disorder etc.

    I did not know at the time that this is when the Borrelia bacteria had disseminated throughout my body.

    Lyme often starts with a flu-like illness. Many people can't pinpoint the time though because the symptoms are common. There are also many presentations of lyme. My daughter has it also. She has chronic fatigue, migraines, insomnia, back pain, chronic sinus infections,etc.

    Lyme symptoms can look exactly like MS, Parkinsons, Alzheimers, CFS, FMS, ADHD, autism, lupus, RA, bipolar disorder, etc. It affects people differently depending on the paths it takes.

    I had viral testing 2 yrs ago through Dr Dantini in FL. He said some of my levels were high enough to treat. I took Famvir for 6 months. I did not improve from the med though. The following year I took acyclovir for several months with no improvement.

    I did get somewhat better at the time from eliminating sensitive foods from my diet.

    Since my symptoms were exactly that of FMS, I never really considered lyme. I should have though, since lyme is really just a bacterial infection that is chronic, like chronic viral infections can cause symptoms also.

    I am 9 weeks into treatment which is still very early. I have started to sleep better though, which is a miracle for me.

    All those years I was absolutely sure my illness had a viral cause, but it wasn't true.
  10. Nanie46

    Nanie46 Moderator


    If I can help you find a Lyme Literate MD, let me know....have you tried the "Seeking a Dr" board on
  11. carol/teller7 yes could you tell us what symptoms and why the dr thought it is parkinsons? Being exhausted doesn't seem like they would think parkinsons? Curious. What tests did they do?