Dizzy spells/chronic pain etc. Please help!

[AnxiousGurl]

My mom has been to several doctors, and is looking into traveling to the Cleveland Clinic, she heard that they have the best neurologists. My mom suffers night and day with chronic neck and shoulder pain that is unmanageable and severe, she also has head tremors, bad balance, slurred speech, mini-strokes/dizzy spells- where her eyes roll to the back of her head, she loses all control of her muscles and if she is able to hold on to something she sways back and forth, otherwise she falls. She also has a hard time writing and eating, she tends to miss her mouth, so she holds the fork with both hands. When she is doing anything else her hands are steady and still. The doctor she saw put her on ultrum and cymbolta for the pain( I'm not sure if I spelled that correctly), then another doctor said that she couldnt take the two together, so now she's just taking cymbolta in the morning and she still suffers alot, she gets up in the middle of the night almost every two hours, if that, and hops in the hot shower which helps the pain a little bit, sometimes she in and out of the shower all night just so the pain isn't so bad. Also, she had seizures when she was a little girl. I know it would be better if you actually saw her and could take a look at all of her records, but I was hoping for some thoughts and knowledge from a doctor's perspective, maybe there is something you know that the other doctors couldn't pin point. Thank you for your time and all you do.  

[shurly]

When I read about AnxiuosGurl's Mom (Feb 2008) I couldn't believe it!  My Mom is going through the same thing.  She was misdiagnosed with a stroke 6 months ago and her symptoms kept getting worse instead of better.  We got a 2nd opinion from a new neurologist that confirmed Cerebellitis (Acute Cerebellum Ataxia) by doing a spinal tap. Her symptoms started with neck and shoulder pain, nausea and vomiting.  Then, she had slurred speech, couldn't write, difficulty swallowing liquids, and her balance and depth perception was off.  After several months her symptoms became worse...all of the above as well as double vision and jerky movements in hands, arms and legs.   The Dr. said it is very rare in adults and that it is from a viral infection that affected the cerebellum and caused swelling in the cerebellum.  My concern is this:  She has been on high doses of steroids via IV in the hospital for 5 days.  Now, (3 weeks later) she is at a rehab hospital in the Medical center in Houston and they put her on predisone (60 mg) She is not getting any better.  Is there any other course of treatment?  Will she ever get better?  She can't do anything by herself.  It is so frustrating as no one knows much about this.  Any advice would be much appreciated.

[AnxiousGurl]

Ok, thanks again for all your help, input and knowledge. It is appreciated greatly

[Abhijeet Deshmukh, MD]

Hello.

I do not practice at the Cleveland Clinic. You have done a good job searching for the diagnosis. But in my opinion, you should not consider this as the final diagnosis. There are a few points, like, the age of onset, the clinical progression which are not in favor of SDS.

But I would like you to visit the clinic and consult the doctors there with a neutral approach. You should ask them about the various possibilities. I guess, she will be examined thoroughly. The tilt table test will be done.

I hope your visit is fruitful.

Regards

[AnxiousGurl]

Last night I was doing some research and came across "Shy-Dragger Syndrome" also known as "Multiple System Atrophy." Some of the websites descriptions were different, but she has all the symptoms-

an excessive drop in blood pressure which causes dizziness or momentary blackouts upon standing or sitting up. There are 3 types of Shy-Drager syndrome: Parkinsonian-type which may include symptoms of Parkinson's disease such as slow movement, stiff muscles, and tremors; cerebellar-type which may include problems such as loss of balance and the tendency to fall; and combination-type which may include symptoms of both types 1 and 2. Parkinsonian symptoms and symptoms of autonomic dysfunction such as constipation early in the course of the disease. Constipation may be unrelenting and hard to manage in some patients. Shy-Drager may be difficult to diagnose in the early stages. Other symptoms may also develop, such as generalized weakness, double vision and/or other vision disturbances, impairment of speech, sensory changes, difficulties with breathing and swallowing, irregularities in heart beat, inability to sweat.                  
It describes her completely, she used to be able to go on bike rides, and would never sweat. She also used to be constipated, now I think it has a lot to do with the medications. She has the tremors, the bad balance, vision problems, slurred speech, trouble breathing at times ...I mean could this be it. One of the websites said that its more common in men, and it usually happens to people ages 37-50 something, and most individuals die 7-10yrs of onset symptoms, but my mom has had most of these problems for way over 10 years, her speech and balance problems have been going on for as long as my mom could remember, everything else came about when she was a young adult, and now shes 47 everything is getting worse. What do you think about this Shy-Dragger Syndrome or MSA? Also, are you at Cleveland Clinic? We want to go there soon, if you could actually see my mom, that would be great.

[AnxiousGurl]

My mom is scheduled to go to the neurologist this month. I will print this out and bring it with us to the doctors, I'm hoping the help and knowledge that you've provided here has led us in the right direction.  I will keep you updated!

Thank you very much.

[Abhijeet Deshmukh, MD]

Hello.

Yes, it is possible that the cerebellum reduces in size gradually over days and weeks. This is called cerebellar atrophy.

The symptoms did suggest a cerebellar problem. An MRI should be able to note a change in the cerebellar size. There a several signs on MRI that can confirm cerebellar atrophy, such as enlarged fourth ventricle and prominent superior cerebellar cisterns.

If the cerebellar atrophy continues, she will have serious problems with balance and equilibrium and cognitive problems among many other problems.

Cerebral atrophy can be age related, alcohol related or spinocerebellar degeneration related. There are many other causes, but the ones mentioned here are more relevant to your mother's symptoms.

Atrophy can not be reversed. But it can be halted or slowed down, if we can nail the cause.

Regards

[AnxiousGurl]

The doctor thinks that-that part of her brain-the cerebellum-is getting smaller and smaller-is that possible, and is there a way to find out if thats whats happening, can it get any smaller, what happens to her if it keeps shrinking? Is there anything that can prevent this from getting worse-or can it be possibly reversed somehow?She also has to take a B-12 shot once a month.Any ideas?

Thanks again

[AnxiousGurl]

She has had several MRI's done of the brain and everything always came back normal. Then last year, she had another MRI of the brain: first, without contrast,  and then with contrast to see if she has ataxia, and that came back normal as well.

[Abhijeet Deshmukh, MD]

Hello.

Has she got an MRI of the brain ? This is to see if there is any tumor.

Cymbalta is helpful in neuropathic pain. It is marketed for that indication only. It is known to help diabetic neuropathy, and to some extent, other neuropathic pains. That's the reason why it may not be helpful here. But then, probably no other pain medicine will work. Her Neurologist will be the best person to guide you about any other medicine.

Please let me know if an MRI is done. If not, get it done as soon as possible.

Regards

[AnxiousGurl]

Well, the doctor she was seeing thought it was Cerebellur Ataxia- I believe thats what he said. She took the test and it came out negative so they ruled that out. On and off, she has been feeling very nauseas, sometimes to the point where she's had to crawl to the bathroom because she thought she was going to throw up. Sometimes she says it feels like everything is spinning, sometimes it is just a nauteous feeling.

Thanks so very much for your response, I really cant thank you enough.
She has had medical problems practically all of her life and no one can seem to help her or diagnose her, and her problems are getting much worse, the pain is unbareable making it harder for her then it already is and that is just one of her problems. So, what should she do about the Cymbalta she's been on it now for awhile..does she just stop taking it..I mean to me it doesnt even seem like its helping at all. And if it is a tumor..what can we do? I hate seeing her suffer every day shes 47 years old and still has time, I dont want to see her go. She's my best friend and my mom. I mean there has to be something that they can do.

[Abhijeet Deshmukh, MD]

Hello.

You have written a good history. I would like to say that Cymbalta is definitely not appropriate. Her problems are far from just the pain.

The imbalance, slurred speech, dizzy spells, up-rolling of eyeballs and the disturbed eye-hand coordination ( while eating) strongly suggest a dysfunction of the Cerebellum (the small brain).

Please let me know if she also has nausea or vomiting. I would like to consider and rule out a space occupying lesion in the brain (tumor).

Regards