Hi everybody,
I have been evaluated by many doctors, but they haven’t given me a consistent diagnosis? They’ve called it ataxia, dystonia, myopia, drug allergies e.g. I suspected that it might be muscular dystrophy or cerebral palsy or even tardive dyskinesia? I also have schizophrenia and conversion disorder. Can you all help me to find what my condition is?
I’m having the same problem in my diagnosis. I can’t seem to get anyone who really knows.frustrating
To find ataxia Gene test or MRI would work 99% accurate and your doctor has to be neurologist to look at your reports.
Wish I could help. 3 doctors say the same now, but it did take me over the years (close to 10) of mis diagnosed. When I saw chronic anxiety in the drs notes, I stopped seeing drs all together until 2 years ago. Hope you do get a proper diagnosis soon though.
Hello Camasy,
I am not a health professionnal and am not capable of telling you what your problem is, but I did not know what “conversion disorder” was, and I researched it. I found some explanation on tbe Mayo Clinic website and Iread that tbe symptoms of conversion syndrome are the same as many of Ataxia’s which could be the reason why your doctors have mentioned Ataxia and other conditions with similar symptoms.
Here is the quote from the Mayo Clinic article:
"Symptoms
By Mayo Clinic Staff
Conversion disorder symptoms may appear suddenly after a stressful event or trauma, whether physical or psychological. Signs and symptoms that affect movement function may include:
Weakness or paralysis
Abnormal movement, such as tremors or difficulty walking
Loss of balance
Difficulty swallowing or "a lump in the throat"
Seizures or convulsions
Episode of unresponsiveness
Signs and symptoms that affect the senses may include:
Numbness or loss of the touch sensation
Speech problems, such as inability to speak or slurred speech
Vision problems, such as double vision or blindness
Hearing problems or deafness"
May be if you are experiencing those symptoms, since you have conversion syndrome, they are only the confirmation of the diagnosis of conversion syndrome and not necessarily another condition…
I hope I am making sense and that you find satisfaction in a firm diagnosis soon.
Best wishes to you. Take care.
Cicina
If you have regular pain or health issues it is advisable to contract doctor rather then to look for solution on chat forum.
my 2 cents
I’ve had a few MRIs but none of them were for Ataxia? The neurologists seem to just evaluate for narrow predefined diseases and avoided diagnosing any others.
sunny8088 said:
To find ataxia Gene test or MRI would work 99% accurate and your doctor has to be neurologist to look at your reports.
I’ve been through this same phase!!! That appearance of mental illness in the doctors’ exchange made me avoid them, too, but their medicine works!
lca said:
Wish I could help. 3 doctors say the same now, but it did take me over the years (close to 10) of mis diagnosed. When I saw chronic anxiety in the drs notes, I stopped seeing drs all together until 2 years ago. Hope you do get a proper diagnosis soon though.
Right!!! All those regular symptoms have been suppressed.
sunny8088 said:
If you have regular pain or health issues it is advisable to contract doctor rather then to look for solution on chat forum.
my 2 cents
And i’ve talked to him for many years about the myopathogy?
sunny8088 said:
If you have regular pain or health issues it is advisable to contract doctor rather then to look for solution on chat forum.
my 2 cents
Oh!!! Maybe comorbidity with ataxia as a secondary disorder???
Cicina said:
May be if you are experiencing those symptoms, since you have conversion syndrome, they are only the confirmation of the diagnosis of conversion syndrome and not necessarily another condition…
I hope I am making sense and that you find satisfaction in a firm diagnosis soon.
Cicina
Dear Camasy, Have you seen a neurologist that specializes in ataxia? Have you had an MRI of your cerebellum? If not, I would suggest these things for you..., ;o)
I have had many cerebellar scans but not for ataxia? It might help!!! To find the type of ataxia!
Except, if the ataxia is secondary to another disorder (conversion disorder, dystonia, cerebral palsy, e.g.,) should I put more effort in finding it?
Testing for diabetes instead of numbness in limbs for example?
I was diagnosed eleven years ago with Sporadic Cerebellar Ataxia (unknown cause/symptoms 24/7). I had an MRI, which showed atrophy of my cerebellum. I also had am EMG (nerve/muscle test, I think?), many blood tests and visual testing. I see a neurologist that specializes in ataxia's and is an ataxia researcher as well. I know what I have, but don't know why..., oh well, one out of two isn't bad...,ha! If it would give you peace of mind, by all means, try to find out! ;o)
Comorbidity strikes us all..keep asking and never stop your own research especially these 'forums'b/c we have Ataxia and no-one knows just how that feels like we do...accept that a new life-change has begun !!!
..best wishes..Ozzy
OH!!! Ok! I will.
Thank you Rose!
I hope life changes for the better for us all!!! Thanks Ozzy !
The body is a very complicated thing and more and more is being found out every day. Conditions are being identified now on a gene basis. Only a few days ago after having Ataxia symptom's all my life was diagnosed. It is so complicated. I had to be very patient and leave it to the professionals to diagnose. It took arms full of blood muscle biopsy's etc and a lot of hard work.They all have your interests at heart and want to "sort you out" It has become relatively easy to symptom check on the net, but this can and is misleading.It is horrible not knowing and I think everyone can recognise where you are. Cicina speaks with a lot of authority and knowledge. Be patient, realise you are not he only one going through this process and through forums like ours you can get support but NOT diagnosis, leave that to the doctors and laboratories who work behind the scenes. Hopefully before long you will get sorted..
Thanks Ashbourne for your wise statement. It is true that forums should not be the place to go for a diagnosis, but in the case of rare diseases, it is a place where there is the biggest number of people with the same rare disease and where doctors themselves could find answers to some of their questions. We must realize that some doctors will not see a case of ataxia through their entire career, as it is a “rare” disease, therefore even if they “read” about it at med school, they cannot possibly be expert in the matter unless they see cases on a regular basis.
To come back to the question CA2015 asked, in my first post, I was not thinking of comorbidity, although it is always a possibility, but I was thinking only of your ataxia being a symptom of your conversion syndrome. In this case, you need to treat this syndrome as a whole, rather than look at the ataxia as another entity.
Also, you must realize that there are medications, which cause ataxia. Check if any of the ones you are on could cause it…sometimes, changing medications eliminate a problem…
This is just a thought, nothing scientific, just an opinion to be taken as what it is… Just trying to use common sense.
I wish you the very best and hope you get the answer you need.
You need a doctor who is going to look at the whole picture. This is usually the role of the internist. Often, specialists will see you as the body part that they are trained to heal. A gastroenterologist will see you as a digestive system, a pulmonologist as a pair of lungs, a neurologist as a brain and a bunch of nerves etc…
The internist will try to see the connection with the rest of the body.
Do not think the worst right away. Many symptoms of serious diseases are the same as the ones for little ailments…
Have a good day.
Cicina