Have Number Of Neuro-muscular, Connective Tissue Issues And Inflammation. Prednisone Works Well. What Can Be Done?
I also have gastroparesis, and a neurogenic bladder with spasms, uncoordinated in 2 spots, have had sling, interstim device, meds, and now I have to self XXXXXXX I have spasms and tightness, and some joints have pain with wrists and elbows sometimes bending the wrong way hurting me, and lower back and hip pain, left knee pain. nerves released are both tarsal, right tibular, left ulnar, right carpal, right ulnar with transpositioning....gallbladder is out. I have vertigo. Ataxic gait, have had a lot of migraines, different types....told I had complicated, and chronic with intractable migrain. sometimes the wrong words come out that don't fit. sometimes trouble swallowing, GERD, Obstructive sleep apnea, insomnia, disorders of muscle, ligament, and fascia, muscle weakness, and muscle is atrophying. poor endurance. occipital neuralgia-bilateral. peripheral neurapathy. autonomic damage. polyneuropathy. tremor. fibromyalgia. ataxic gait. hair loss. I am overweight. I have tri-focal script and use reading glasses with prism. I have trouble sometimes with focusing my eyes, at times they move around . THey are extremely dry with dry spots and scarring. chronic blepharitis. lower lids need stitches so eyes close. melbomian gland dysfunction. Pain in and behind and around left eye. reflexes don't work. left finger does not go right to nose on neuro exam. hearing issue recently. vitamin D deficiency, and iron. airborn allergies of some sort, do not know if other, never tested. get bladder, UTI and yeast infections easily. get sores in mouth, some around mouth, often on my tongue. a soreness and sloughing of skin on roof of my mouth. (mouth dryness and cavities). get hoarse voice a lot.
I am concerned about bloodwork, spinal fluid results, and have not yet had MRI due to interstim device, and am concerned that a doctor may be biasing information sent, that is too long a story to explain. I have searched long and need diagnosis or diagnoses or direction on how living in poverty level not knowing if research program or somewhere can run everything and find answer for me.
First diagnosis would be collagen vascular disease
Detailed Answer:
Hi,
Thank you for posting your query.
I agree you have multiple symptoms affecting multiple systems, and a doctor may get biased. Also, there are chances that he may label them as psychosomatic, especially if he does not find a cause.
However, my first diagnostic possibility would be collagen vascular disease with vasculitis. This condition can explain involvements of multiple systems, such as central nervous system (ataxia, etc), peripheral nervous system (nerves, muscles), skin, eyes, joints, bladder, gut, blood (anemia), etc.
Investigations that would help in diagnosis would be:
XXXXXXX profile, anti ds DNA, c XXXXXXX p XXXXXXX rheumatoid factor, ESR, C reactive protein
Nerve conduction studies (NCS)
Serum CPK and LDH (elevated in muscle disease)
Nerve and muscle biopsy may be needed, if NCS and CPk are abnormal,
MRI of brain and spine
I am sure you would improve with medications. Prednisolone is good, but has multiple side effects if used for long. So, today, we have the option of using steroid sparing drugs, such as azathioprine, cyclophosphamide, mycophenolate, etc. Once a diagnosis is established, then, the correct treatment plan can be made.
I request you to consult a rheumatologist and neurologist for evaluation and further guidance.
I hope it helps. Please get back if you have any more queries.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology) XXXXXXX Consultant Neurologist
Detailed answers are below
Detailed Answer:
Hi,
Thank you for getting back with more details.
Collagen vascular disease is an auto immune disease, which causes inflammation of multiple organs, such as bladder, kidney, liver, eyes, skin, nerves, stomach, etc. The disease is mediated by various antibodies, which are present in the blood.
Inflammatory markers are commonly seen in blood tests. These include ESR, C reactive protein, rheumatoid factor, anti nuclear antibody, etc. If these have not been tested, you can get them tested.
I do not think you have psychosomatic illness, based on the information you have provided.
MRI of head would be useful.
You can send your case details to certain academic hospitals in USA, to find out if any research is going on this disease.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Fibromyalgia and diabetes can not cause all these.
Detailed Answer:
Hi,
Thank you for getting back.
Fibromyalgia is characterised by generalised aches and pains, and tenderness on applying pressure. Autonomic symptoms and involvement of other systems such as skin, etc do not occur in this condition.
Similarly, diabetes mellitus can affect peripheral nerves causing tingling, numbness and weakness of hands and feet. Autonomic involvement too can occur as a part of diabetic neuropathy, causing problems with bladder and bowel functions. But other features including involvement of other systems does not occur in this condition too.
So, in summary, all your findings can not be explained by either of the two conditions above.
It would be nice if you could send the photographs.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)