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Have number of neuro-muscular, connective tissue issues and inflammation. Prednisone works well. What can be done?

Nov 2013
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Practicing since : 1994
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I have a number of neuro-muscular, connective tissue issues, and have inflammation a lot...prednisone works well, but have to take often........trying to figure out how to help myself, and doctors not getting answer, ...

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.
Posted Sun, 29 Sep 2013 in Brain and Spine
Answered by Dr. Sudhir Kumar 5 hours later
Brief Answer:
First diagnosis would be collagen vascular disease

Detailed Answer:

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
Above answer was peer-reviewed by
Follow-up: Have number of neuro-muscular, connective tissue issues and inflammation. Prednisone works well. What can be done? 2 days later
What is collagen vascular disease? And also, I had nuclear testing to diagnose gastroparesis.....I had urodynamic studies, one done some time between 2000 and 2004, and the other being this year, same urologist along with ultrasound and various treatments where it was found neurogenic bladder with high pressure spasms and 2 parts not coordinated with mixed incontinence /retension. .......I am told I have some autonomic system problem.......all eye issues have been diagnosed via optometrist and others added by opthalmologist............surgeon saw with his eyes the nerve lesions, and/or scarring and inflammation. How can there be inflammation without it showing in the bloodwork? I have an interstim device implanted, so I can only have a head MRI, and with specific way as prescribed by Medtronic........If they are finding all these evidences of disease and disorders (was told degenerative disc disease, and some can it still be labeled psychosomatic? Is there an option for someone of poverty level to go out of area or research clinic or hospital to find out what is happening?
Answered by Dr. Sudhir Kumar 21 minutes later
Brief Answer:
Detailed answers are below

Detailed Answer:

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)
Above answer was peer-reviewed by
Follow-up: Have number of neuro-muscular, connective tissue issues and inflammation. Prednisone works well. What can be done? 14 minutes later
Thank-you for extremely prompt reply! I wish only that I knew how to send you some pics on my phone with face rashes, and facial swelling, atrophied muscles in ankles and lower calves, and swelling in upper calves, etc. Could fibromyalgia cause these things? Diabetes type 2? I have diabetes type 2 for sure. I am on a 70/30 mix insulin. Unless I figure a way to send them, I thank-you very much for your help. Peace and good health
Answered by Dr. Sudhir Kumar 8 hours later
Brief Answer:
Fibromyalgia and diabetes can not cause all these.

Detailed Answer:

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)

Above answer was peer-reviewed by
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