Hi, Quix.

   I am headed back to Cleveland Cinic tomorrow. I am scheduled to have the QSart & QTilt tests on Tuesday.

   Dr. K ruled out Cauda Equina & CIPD. So, now she is testing my autonomic nervous system.

   I would appreciate your thoughts.

   Hope you are well. I'm clearly, not.

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Avatar universal
Quix, my last hope was CCF. I did go to a pain management clinic last year, where the 'specialist' proceeded to give me 4 nerve blocks and a radiofrequency that, as it turned out, should not have been done. My Neuro was irate that they worked on my 'normal' spine. Furthermore, they did not help, at all.

My babies have been pressed up against me whenever I am sitting still. One of my girls, holds my chin with her tiny paw, kisses me soundly, then looks into my eyes, as if to say, "Is that better?".

I told hubby you send him thanks for taking care of me, he smiled, and said, "Always".

Thanks for thinking of me.

T. Thank you for the soft hugs & prayers.

Rich truly is a gem.

I hope to hear from Dr. k this week, with the results. I am hoping for answers, but I have this deep fear that they will be negative.

I am getting copies of everything, but I do wonder how much worse I need to get before the answers are clear.

My D.O. said last week, to give him 6 weeks, he wants to check a few things. I think he is stuneed by how rapidly I have gone down.

Need to get off the computer, hurts like 'you know what' to sit here.

I'll be back when I have results.

In the meantime, know that I am also praying for all of you, as well.

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Avatar universal
Sending you soft hugs and prayers.

Your hubby is a gem

I hope DR K  can find some answers with these test.

I agree with Quix as in getting some pain management to give you some releif

Yorkie,I hope you are getting copies of all these test results for your personnal files as they may not know now,but some disorders can bring out nasty symptoms before it completely manifests itself.

Sending you prayers to be pain free.

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147426 tn?1317265632
Dang it!!  You were supposed to get real answers.  That was my ray of hope today!  I am so sorry you are in such pain and further entrenched in LimboLand.  Well, then, your place is rightly here.  Can she or your reg doc give you a referral for some pain control -management?

The long drive with it's vibrations sandwiching a sleepless night could not have been good for you!  I bet the babies are beside themselves with worry.  Mine are always upset when I am hurting or not feeling well.  Hug them tight, I send thanks to your husband for caring for you.

May you sleep well - have you tried sleeping in a recliner?  I still cannot make the transition from recliner to adjustable bed, so now for two years I am camped out with the livingroom as my bedroom.

Take care, I'll be thinking about you!, Quix
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Avatar universal
I'm home from CCF. Rough trip. We stayed in a hotel the night before the trip, as it is a 6 hour drive. We had a room next to a stairwell, and people were stomping up and down all night long, so we got no sleep whatsoever. (Drove home after the tests.)

Dr. K and my Neuro at home both ruled out MS, in Sept.  Dr. K ordered a Deep Nerve/Muscle EMG then, and it was normal. Then, she ordered Solumedrol infusions and oral Prednizone to reduce inflammation in the nerves of the spinal column, based on the 2 og bands in my spinal fluid. No relief.

I think the QSart caused me some issues. Approx. 3 hours after the tests, my neck became stiff, and I could barely turn my head to the left. It became so stiff and painful that soon every little bump in the road caused pain. When I got home, I coud not get out of the car without assistance, and I could not lay down. Finally when I managed to lay down, I couldn't movw without pain. then, the toes on my left foot began to spasm, and my left hip hurt.

The symptoms I am still having are burning in the legs, sosmetimes thighs, my low back hurts so bad I can barely walk most days. And the nerves in my spine sting. I cannot empty my bowels, only get very slight urge. Tight anal sphincter muscle.

Dr. K told me when she ordered these tests, that after this, she doesn't know what else to test. My Neuro at home is at a loss.

It's starting to look like I am going to live in the 'Land of Limbo'.

Thank you both for replying.

I am so depressed right now. I am tired of the pain. And all the pain meds give me such headaches.

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147426 tn?1317265632
I am sorry I didn't get to you and even sorrier that you are feeling crummy.  SL gave you the same info I would have.  I am not not knowledgeable about autonomic neuropathy, except for the same articles she cited.  I do know that autonomic problems are often a part of MS and that many neuros do not seem to be aware of it.

How did she rule out CIDP?  Did you have normal nerve conduction studies?

We have another member who doesn't post much who also has autonomic neuropathy of unknown cause.  She also has had a horrible time obtaining a diagnosis.

What symptoms are you having now?  I know we won't hear from you until you are back from the CCF, but I didn't want to pass you over.

My best, most healing thoughts are coming your way, so that you begin feeling better soon.

Helpful - 0
198419 tn?1360242356
        Autonomic Nervous System and MS


MS and the Autonomic Nervous System

       Symptoms related to alterations of the autonomic nervous system are frequent in patients with multiple sclerosis (MS). Bladder or bowel dysfunction or impairment of sexual performance is highly distressing for most MS patients,whereas the clinical relevance of other autonomic symptoms is less clear. Cardiovascular autonomic alterations might relate to clinical signs such as orthostatic intolerance; a relationship with fatigue is uncertain. However, the frequency of abnormal findings in tests for the cardiovascular autonomic system varies due to the lack of standardized test performance or differentially used cut-off values. The incidence of additional symptoms such as pupillomotor or sweating alterations and especially their relationship to overall autonomic nervous system abnormalities is not well known. Although their impact on daily life is low, they can at least serve as diagnostic tools. Beside these clinical aspects, alterations of the autonomic nervous system have also been reported to alter immunological cascades in experimental conditions. However, corresponding results have not been confirmed in clinical trials yet.

Autonomic Dysfunction in MS

        Multiple sclerosis (MS) is the most frequent chronic neurological disease affecting young persons in developed countries. MS is, however, considered as a secondary cause, of central origin, for autonomic dysfunction. The most common autonomic symptoms in MS are disorders of micturation, impotence, sudomotor and gastrointestinal disturbances, orthostatic intolerance as well as sleep disorders. The majority of the patients suffer at some period of the disease from lower urinary tract symptoms and sexual dysfunction. Awareness and treatment of these conditions is vital to improving health and quality of life in patients with MS. The increased understanding of the pathophysiological mechanisms in autonomic dysfunction in MS, along with technological and pharmaceutical developments has advanced our ability to treat the multiple aspects complicating autonomic failure in MS.

Have a safe trip,

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Avatar universal
Hi, SL

   I appreciate you're chiming in. Actually leaving in about an hour, but thought I'd check in one more time.

  Actually, that helps quite a bit. Thank you so much.

   I am hoping these tests will provide the answers, because after this, my Neuro here, and Dr. K at Cleveland have no more ideas.

   Now I am off to pack my Yorkies food and supplies, as they are going along. They are so excited, have been following me around all morning.

  Again, thank you. See you on Wednesday.


Helpful - 0
198419 tn?1360242356
Hi Sheila,

I know you posted this to Quix, but thinking you are already on your way to the clinic, so thought I'd chime in.  

If I've caught you in time, hope this info is helpful. It's from the net.  Looks like it's good they are doing these tests.  As it states, to determine normality, or dysfunction, and whether the results of the test determine it being the primary (depending on the findings) or secondary disorder. . .  .

***            In a patient with a suspected autonomic disorder the major aims of the investigation are to determine the normality of autonomic function, to assess the degree of dysfunction with an emphasis on the site of the lesion and on the functional deficit, and also to ascertain whether the abnormality is of the primary variety or secondary to recognized disorders, as the prognosis and management may depend on the diagnostic category. Investigatory methods are available for recording cardiovascular, sudomotor, gastrointestinal, genitourinary, respiratory and pupillary autonomic functions. They are in routine clinical as well as in research use to study both central and peripheral ANS functions.

Wishing you all the best w/your appointment and tests,
I'm sorry you are not feeling well.

Helpful - 0
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