Brief Answer:
Needs a workup

Detailed Answer:
Good afternoon. Thank you for your question on our network. I hope to be able to give you some information that will assist your obtaining a higher level of workup and attention with hopefully, some treatment once a specific diagnosis can be made.

Now, let me say up front that with your history of AIDS and HIV I'm sure it will come as no XXXXXXX to hear that the most LIKELY culprit causing your movement disorders in both your limbs, body, and inability to speak are the consequences of your HIV. However, we should not just take that fact for granted until all other possibilities for this cerebellar presentation are worked up and discarded as possibilities.

First and foremost you would need a thorough and complete neurological examination. The fact that your cerebellum is a bit atrophied (which certainly COULD be a function of age) makes me automatically wonder about a family of diseases referred to as SPINOCEREBELLAR ATROPHIES or (SCA's). More and more are being added to the growing list on an ongoing basis. There are a number which have been classified and characterized based upon genetic studies. Therefore, a genetic workup would also be in order if there is any thought that SCA's could be involved.

Also, you didn't specify but I'm assuming that when you say ATAXIA yo are referring to 4 limb and even possibly neck/truncal ataxia, am I right? Or are we talking about just the legs? Just the arms would almost be unheard of.

I'm a bit surprised to see that your DNS of origin is literally "down the street" from Baylor and you say the neurologists have offered in terms of a formal diagnosis or workup except for treatment with BOTOX? Have you gone to the neurology department or more appropriately their Movement Disorders Division?

Have you been evaluated for the aphonia or perhaps dysphonia if you can at least utter sounds? If you have any type of quadriparetic or quadrispastic ataxia then, your inability to speak may be on the basis of laryngeal dystonia. BOTOX is consider the drug of choice for that problem. Have you been seen by ENT for the workup there or has it been determined that the dysphonia is clearly neurogenic in nature? If the laryngeal muscles themselves are not spastic or dyskinetic in any way then, the other possibility is that of cerebellar induced aphonia. Eye movement abnormalities are also highly associated with cerebellar pathology as the peduncular attachments go through the mesencephalon where eye movements are highly controlled and coordinated.

We know also that cerebellar ataxia is actually caused not usually as a DIRECT cause of HIV infection but by opportunistic infections that can occur as well as neoplasms AND an often overlooked problem of VASCULITIS within the cerebellar hemispheres and this can severely compromise or even shut down blood-flow to certain regions of the cerebellum necessary for movement control. Therefore, all these things would have to be considered.

I would also include a heavy metal screen and other routine labs which I'm thinking (hoping) you've had done such as thyroid hormones, electrolytes, and other standard bloodwork we get to start the ball rolling.

Take a look at this case report of cerebellar symptoms and a patient with HIV. I've provided you with the journal in which it was published:


April 23, 2014
J Int Assoc Provid AIDS Care. 2014 Sep-Oct;13(5):409-10. doi: 10.1177/0000. Epub 2014 Apr 23.

Cerebellar complications of HIV infection primarily manifested in ataxia, usually arise as the result of cerebellar lesions due to opportunistic infections, vasculitis or neoplastic processes. A 28 year old female known to have HIV infection for last four years, presented to our hospital with progressive unsteadiness in walking, slurring of speech and intention tremors for the last two months. There was no family history of similar complaints, and she was on Anti retroviral treatment for last one and a half years. The results of examination were notable for severe dysarthria, slow saccades, a conspicuous dysmetria and dysdiadochokinesia. She had no cognitive, sensory or motor deficits. MRI revealed diffuse cerebellar atrophy. Extensive laboratory work up failed to disclose a cause for subacute ataxia. Isolated cerebellar degeneration in an HIV patient is rare and should prompt a diagnostic work up.

I think there are many similarities between your cases though yours in many ways doesn't sound as severe...and in some ways perhaps, more severe.

In conclusion, I believe your ataxia requires a workup especially since the degree of cerebellar atrophy by your description seems to be out of proportion to the extent of your disease. However, we recognize the fact that your history of HIV infection and AIDS places you at extremely high risk and makes HIV the most likely culprit to all the neurological problems although we also can say that the virus itself may not be as relevant to the neurological symptoms as the consequences of having HIV in the central nervous is when it comes to the development of processes such as neoplasms, vasculitis, and opportunistic and rare infectious entities which can set up shop and disseminate throughout. I am sensitive to the fact that MRI images as you say fail to show anything but mild cerebellar atrophy but still the case study I provided to you illustrates the concept of still working an individual up even when diagnostic studies appear to be in favor of HIV as the primary culprit. Ruling everything else is worth it....and that includes SCA's along with genetic testing.

Treatment would depend upon a diagnosis and again, though it seems that antiretroviral therapy seems to be the most specific way of handling this particular case it is still the case that other entities should be ruled out such as infections and other issues in the event that another percentage of contribution to your overall condition of being unable to speak and bedridden could be caused by a treatable cause.

I do not specifically know anybody in the Dallas/Ft. Worth region of the country who is specialized in this particular problem but it certainly seems worth the chance that Baylor Medical Center may have at least a movement disorder or a NEURO-AIDS specialist who could be consulted for an opinion.

I am familiar with and know a wealth of people in the XXXXXXX area. Most of my connections are through the University Hospitals of XXXXXXX teaching system affiliated with Case Western Reserve School of Medicine. I am a general adult neurologist, however, quite interested in movement disorders and am a member of the Movement Disorders Section at the XXXXXXX Academy of Neurology. I'd be available to initially see you, do the full general neurological and movement disorder evaluation and then, based on what we've got build the team who can see to your various problems in order for things to be addressed that can be treated according to appropriate workups and testing protocols.

If I've satisfactorily addressed your question could you do me the kindest of favors by CLOSING THIS QUERY and be sure to include some fine words of feedback on your opinion as to our transaction? If you have any comments or are interested in potentially considering a visit to XXXXXXX OH for a workup feel free to let me know at your convenience and we can work to set that up.

Again, many thanks for posing your question to our attention on this network and do not forget to recontact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this topic or others.

This query has utilized a total of 52 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.

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Brief Answer:
Many thanks and all the best

Detailed Answer:
Please don't forget to keep me up to date on your status and what is found if you end up going to Baylor and being seen.

Could you do me the kindest of favors by CLOSING THIS QUERY at this time and be sure to include some fine words of feedback as to our encounter? If you have any comments or even after your visit to Baylor are interested in considering a visit to XXXXXXX OH for a workup feel free to let me know at your convenience and we can work to set that up.

Again, many thanks for posing your question to our attention on this network and do not forget to recontact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this topic or others.

This query has utilized a total of 57 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.

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