It has been almost 2 years and I am still without a diagnosis. My problem started when I started losing my balance and falling. This was followed shortly by severe muscle spasms (myoclonus) which left me unable to walk. The Dr. who saw me in the ER that night automatically summed up that it was either MS or ALS. He did send me for a CT scan to rule out a possible bleed.
Since then, my problems have escalated. I have seen a couple of Neurologists who basically told me that it was "all in my head" I have had an MRI done but because no lesions showed, they would not diagnose MS.
List of Symptoms:
Loss of Balance
pins and needles in hands and feet and face
zero tolerance for heat
pain (primarly in legs and feet)
lost of strength in hands
Bladder problems plus bowel
Low Vitamin D
Low IGG and IGA
Extreme burning sensation in hands and feet
High body temperature but no fever
Bright flashes in eyes
I was sent to a massage therapist and a physiotherapist but it always made my muscles go into major spasms. Both therapies had to be stopped. When this happens, I have to use a walker for stability.
I was see by a psychiatrist/psychologist who both confirmed that the problems were definitely NOT psychological.
I am a single Mom of three teenagers and every day they see me choke on my food, or if I am having a bad day, pick me up after yet another fall.
I am scared but I seem to have gotten lost in the system and unfortunately the wait time to see specialists is outrageous.
My physical state continues to deteriorate..any help would be greatly appreciated.
I am not exactly sure what the levels are, however, my Dr. is sending me to see an Immunologist because there seems to be a continuous drop.
Sounds like a good plan. Are you on any meds that could have caused your low IGG & IGA? I have CVID and have low IgG, IgA, IGE. Typically its at least 2 standard deviations below normal and then given a vaccine challenge, pneumonia and tetanus, then wait 3 weeks and see if your body made antibodies to it. Good luck with immuno.
Aloha... Sorry to hear of your difficulty. Hang in there... May I suggest that you stay on the path of investigation because I have learned an important thing about how doctors arrive at a diagnosis. I was finally diagnosed in 2010 w/neuromuscular disorder yet it did take years of follow up and assessment. The disorder I have is a "diagnosis of exclusion". I would not have been able to get a definitive diagnosis out of the gate at the front end of symptom onset and initial formal inquiry per Diagnostic standards used in our country. Some illnesses cannot be confirmed by an objective method like a blood test for example. It took doctors about 4 years to arrive at a definitive diagnosis. Take care.
I know this is an old thread, but better late than never i guess. I strongly advise you to see a neurologist. I have a rare genetic disease without a cure that is progressive(HSP). Some of the symptoms you are describing are dead on with some of mine(as well as other neuromuscular diseases). A neurologist works with these diseases every day, and can give you an official diagnosis. Your condition may be genetic, so looking into your families medical history may answer a lot of questions before you even see a specialist. It is very important to get treatment ASAP for a progressive condition. Hope this helps, and I really hope you get a chance to read this.