Mysterious Disease

This topic contains 13 replies, has 4 voices, and was last updated by  billwhit1 1 week, 6 days ago.

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  • #116135

    Zeinab
    Participant

    Hello everyone,

    I am new to the forum.
    I haven’t been diagnosd with anything yet, but I have been lookng for answers to my symptoms for over a year now. I stumbled on this website by chance while I was looking for a disease that might fit my symptoms.
    I have been having these weird symptoms that don’t fit “neatly” into one box and that left doctors puzzled. one diagnosed me with ALS, another suspected an autoimmune disease. done an uncountable number of blood work, imaging, and investigative procedures to figure out what is wrong with me, but no luck. I did an NCS & EMG which showed abnormalities and my neurologist decided to send me to a neuromuscular specialist at MDA. I saw the neuromuscular specialist and he examined me, ordered 12 more blood tests,an MRI for the brain (even though I have done that before with another doctor), and lumbar puncture. My question is do I really need the lumbar puncture to be diagnosed with CIDP? what if it is negative? I have all the clinical symptoms, NCS & EMG results of CIDP, would that be enough to make a diagnose?

    thanks in advance for your responses!!

    #116136

    Jim-LA
    Participant

    CIDP and its variants can be difficult to diagnose exactly. Even assessing the results of an NCV is a bit of an art. Usually, all the tests must be made to confirm the presence of CIDP. Neurologists that have specialized in treating CIDP know this and the signs to look for. Other tests can be found in the following publication and may help you and your doctor better understand your affliction, its variants, and how to best treat you:
    http://www.gbs-cidp.org/wp-content/uploads/2013/02/AcuteCareICU13.pdf

    #116137

    Zeinab
    Participant

    Thank you, Jim! I am hoping that my new neurologist will be able to figure whatever this is and give it a name.

    #116138

    Zeinab
    Participant

    This a question for anyone who had a lumbar puncture. My neurologist ordered a lumbar puncture, however, my primary care doctor put me on a low dose of prednisone (10 mg/day) for 2 months but I ran out of my prescription 13 days ago. so my question is, would the prednisone alter the results of the CSF??

    #116139

    Jim-LA
    Participant

    Zeinab, I thinks that’s a question best answered by you neuro.

    #116140

    Zeinab
    Participant

    Thanks, Jim!!

    #116141

    Kathleen Norton
    Participant

    I too am officially “undiagnosed” although I had CIDP previously and was treated successfully with IVIG in Los Angeles area. Now am in Nashville TN & am very sick with full on CIDP symptoms. Symmetrical numbness, weakness, electric shocks, burning in stocking glove pattern in lower & upper limbs, with ascension of symptoms into my legs, hips, shoulder girdle, neck, face, haven’t slept in 4 nights, in bed 24/7 – other disabling symptoms.

    My PA at Vanderbilt accessed me with CIDP however the “senior” team of Neurology at Vanderbilt has written me off for treatment, saying if I rapidly became worse (which has happened) I should enter VUMC ER & they would “figure this out”. Of course I won’t accept this & won’t admit myself as an inpatient.

    I am now pursuing assessment by other Neurologists.

    #116142

    Zeinab
    Participant

    Hi Kathleen,
    I am sorry for your suffering again from this and I hope you find someone who will listen and help you quick!!

    I have been suffering for over a year now and I went through SO many testings and procedures (angiogram, upper endoscopy, cholecystectomy and pancreatic neuroendocrine tumor removal) hoping that they find what’s wrong with me, unfortunately, that was not the case. All this was done in Qatar, where I was working as a teacher. The neurologist in Qatar said this is ALS despite the fact that my symptoms (i. e. pins and needles, tingling, prickling, areflexia) did not match ALS. I finally came back to the states, visited my PCP, she transferred me to a neurologist and put me on low dose prednisone to help with weaknesses. It helped a little but the dose was too low. meanwhile my neurologist conducted all his blood work, EMG & NCS. the NCS & EMG showed abnormalities, however, he was not able to reach a diagnose because I didn’t fit neatly in any one box. So, he referred me to see a neuromuscular specialist who ordered a gamit of blood work as well, in addition to the blood work he wants an MRI of the brain and a lumbar puncture. that’s why I was concerned about the lumbar puncture test with me taking the prednisone and nothing will show on it and I am back to square one.

    #116143

    Jim-LA
    Participant

    Kathleen, see if you can get into see Dr Peter Donofrio MD, or Christopher Lee MD MPH, or
    Amanda Peltier MD MSCI. These Docs are supposed to be some of the best at Vanderbilt Dept of Neurology:
    https://ww2.mc.vanderbilt.edu/neurology/26469

    #116144

    Kathleen Norton
    Participant

    Hello Everyone:

    Thank you for your responses. You should know that it is very difficult to type this as my hands are so affected. Hopefully I won’t make too many mistakes.

    Jim, I have seen Dr. Donofrio. Since I have already had a bout with CIDP, I’m convinced this is either CIDP or GBS.I got a cold & far more severe symptoms rapidly days after seeing Dr. Donofrio & having the NCS/EMG. The blood work & Nerve Conduction studies have led Donofrio to state this does not seem to be CIDP. The Nerve conduction studies (although very incomplete considering my widespread symptoms & compared to my earlier studies) were felt to include damage to the Myelin Sheaths, Axonal involvement, etc. although the Doctor did not go into detail about more specific findings- saying it could reveal early findings & might change later. Donofrio is aware I am worse & offered the possibility of entering VUMC through the ER & “they will figure this out”.

    Tomorrow I have a visit with a neurologist at another Nashville hospital who saved my life when I had severe, life threatening seizures (Status Epilepticus) in May & was hospitalized for nearly a month, in & out of thE ICU, On a ventilator, etc. Although I am still on 2 jut of the 3 anti-seizure meds (including high dose Gabapentin) the “cause” was guessed at by a Vanderbilt Specialist Dr. Sonmezturk who may or may not be correct. Gabapentin is used to treat some of the symptoms of CIDP – interesting.

    OK, hello Zeinab. Thank you for sharing your experience. It is encouraging to hear stories from other patients – if somewhat discouraging. Sorry to hear you had to go through all that. The diagnosis of this condition can be devilishly difficult.

    You apparently had the classic symptoms of bilateral pins & needles, numbness, tingling, weakness, etc. it is often difficult to perceive just how difficult it can be to negotiate the Medical Corporatocracy as a patient. However your story exemplifies how tenacious one needs to be to help find a diagnosis at times. I assume you have received IVIG & are better? Let us know!

    Thank you all again for the support. Will let you know what happens.

    #116145

    Kathleen Norton
    Participant

    Apologies Zeinab: I missed your full description – that you are unsure of the diagnosis & remain in question.

    I have read studies where they treated CIDP with 60mg of Prednisone per day orally. Not sure how successfully. It’s not a treatment I would accept. I believe IVIG or Plasmapereis (sometimes with Prednisone) are the currently used treatments.

    Again good luck with finding a diagnosis and treatment you feel are correct. Keep us posted.

    #116148

    Zeinab
    Participant

    Hi Kathleen,

    Sending prayers your way to find relief from the agonizing pain you are enduring!
    I’ll keep you posted on my situation once there is news.

    #116170

    Zeinab
    Participant

    Hello everyone,

    Had my spinal tap on Wednesday, it went fine but I have a terrible headache ever since. It’s relieved when I lay down, but it’s unbearable if I sit or stand.

    #116181

    billwhit1
    Participant

    Mine also was mysterious and advanced.
    I’m having another bought of GBS or CIDP. We found that the infusions of IVIG were not working. We decided to revert to Plasma pheresis. After 6 times the PP was not working either. They concluded that my age had a lot to do with the system failures. The big one is Blood Pressure. It wonders all over the place. There is absolute no order to it when it jumps up. Sometimes I take my meds as the Dr requested and it still goes up. Later it plummets. So we take a smaller dose and nothing happens today but next week It tops the BP machine.
    I’m also having stomach problems as I’ve lost over 80 pounds. There are several other autonomic systems that are failing. This set of CIDP is the worst I’ve ever had. The neuropathy of my feet goes right on. My energy is at a low point. I breath hard just walking from the bedroom to the kitchen for breakfast. I’m able to sleep well this week but the is not always the case.
    I’m scheduled in to Mayo Clinic next week. A team will study my problems and separate the CIDP and old age. The tests are, to see if my nerve pathway is inhibited by loss of myelin . They shock you over 50 times and measure my response up and back. That we hope will all stay in the milliseconds. But I get so jumpy i do not understand how they separate an advanced shock and one that is normal (me at ease). The other difficult test is a nervebiopsy. Ever had something strike a nerve? It hurts. I’m sure by now they have thought of other hurtful tests. I should be down in warm Jacksonville no more the 3 days and I’ll be home on Friday. Must at least stop at Tybee, Savannah and other southeast spots. There are several misspelled words but you get them and tell me after you read the report, my “Resume’. It went very smoothie and NO pain. not.at all. My CIDP/Lewey body did not interfere with that procedure.
    I’ve read more about Lewey Body mine case particularly. It is sometimes called Lewey Body Alzeimer’s. Not good It will stay with me until my memory forgets everything. Mayo says 3 to 5 years/ Hey I’m 76 now , Split the difference 4 years I’ll be 80 years old then. I’ve had a wonderful life and I’m grateful for all I’ve had. Two years ago my Mother had Alzheimer’s for her last 2 years. She even forgot who I was and being big she was frightened of me. She was on a liquid diet because she had forgotten how to chew and swallow. My progress will be a little different not really except I’ll go out with my boots on. I have a little shop in my large basement and I love every bit of it except the coldness. One day one of my friends said why don’t you insulate your hot water heater? Then the basement would be cold.

    Mayo had more to say like a little Dementia., little Parkinson and Age. So I know my days are numbered , I’ve told my wife where to take me when she can no longer care for me. I’ll accept that but knowing she is safe and in control of our little home is enough. One day she will have to give up the home (52 years). I probably will not be able to help her but maybe we can be together again for another 50 years. Then I’ll see her for eternity.
    How does one keep from crying?. I guess by dwelling on the good times and a wonderful wife.

    Eternity??, but the Bible says we won’t know our wives. Now I’m about to cry again.
    Last week I saw an article about donating a brain for Doctors to try to determine more about GBS/CIDP/Lewy Body Alzheimer’s. Maybe it will help another lost soul.
    I whole heartily thank Mayo in Florida. Go its not as expensive as one might think.
    This was my second trip to Mayo (once up north in the winter and the last to Florida in late summer. Fla is the way to go.
    Right now its just a waiting game. The future looks bad for me. My Mom had Alzheimers to the point of forgetting how to swallow. You loose a lot of things by that time.
    I hate to be the bearer of poor news but Pray for me and yourself. Courage my man! I’m not a strong person and ap to cry when I know I will leave my wife, courage Bjill I do’n want her to see my tears. Love

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