Health

Ask health experts and get answers to your health question ASAP

Ask an Expert,
Get an Answer ASAP!

I was just diagnosed with a few scattered foci of the sub…

Customer Question
I was just diagnosed with...
I was just diagnosed with a few scattered foci of the sub cortical t2 prolongation in the left frontal lobe. They also found my cerebellum has mildly atrophied. I have autonomic dysfunction that has affected my vision, walking abilities are slowed to a snails pace and I need to sit on a little stool I carry each time I stop. I am 48 and look young for my age and very healthy. I take Mestinon that keeps my diaphragm, stomach, intestine, bowel and bladder functioning. I have patchy small fiber neuropathy, autonomic neuropathy, Wicca syndrome, a biopsy showed my salivary glands have atrophied. I have kyphosis now and a mild twist to my spine, which is new. I've got every type of tremor in my body except for my ears, nose and toes. Everything from a fast tremor that doesn't allow me to eat soup, to my torso swaying. I have dismotility from my tongue to (can't spell) orengheal dismotility, esophageal dismotility and more. When I drink water, it comes back out my nose. I have tissues everywhere in the house. The list of my symptoms and diagnoses goes on and on. My husband and I have been waiting for a comparison brain scan that shows that my cerebellum has atrophied for a multiple system atrophy diagnosis. I had an MRI two years ago that showed no atrophy. My regular neurologist said there is no reason to repeat an MRI right now because it would be too quick to see a change. Another neurologist ordered an MRI and found within two years there was atrophy. No one will tell me anything. I'm not hearing back from my regular neurologist who didn't think the test was needed right now, and the person who gave me the test results over the phone couldn't speak English and was confused and literally missed telling me anything. When I saw my test results online, all the nurse said was how on earth did you get to see that online? I told her it's standard practice for their hospital to post all of my test results online. Why wouldn't I see them? She was really amazed that I got access to that information. It sounds like I wasn't supposed to.
So anyways. What do you honestly think a reasonable diagnosis could be. We are pretty bright people. Well aware of my major neurological symptoms. Specialists at Dartmouth say I am the most complex patient they have seen and they don't know what to make of me, so I keep getting passed along to the next doctor. A rheumatologist at Dartmouth after talking with me and examining me for 4 hours told me two years ago that every muscle, organ, and gland is going to atrophy on me. He told me my muscles are a mess and my nerves aren't communicating with anything properly, so they will atrophy. Parts of my adrenal glands have atrophied, so I have to take several medications to make up the difference of them not functioning.
I went from barefoot waterskiing, golf club champion, downhill ski racer, everyday mountain biker, to disabled in a very short period of time. Within 3 years. Now that you've heard just part of my ridiculously long mess, what do you think? I'm ready for the truth. Especially about the atrophying of my cerebellum. One doctor told me he knows I have major problems and to sit back and it will present itself, because it's in the process of doing so. Does the atrophying cerebellum lock a diagnosis in finally? Boy that was long! Too long to go back and proof. Sorry for any errors :-)
Submitted: 2 years ago.Category: Health
Show More
Show Less
Ask Your Own Health Question
Customer reply replied 2 years ago
I forgot to say, "Thank you" ...
Answered in 1 hour by:
6/30/2015
Health Professional: Dr. Arun Phophalia, Doctor (MD) replied 2 years ago
Dr. Arun Phophalia
Dr. Arun Phophalia, Doctor (MD)
Category: Health
Satisfied Customers: 38,436
Experience: MBBS, MS (General Surgery), Fellowship in Sports Medicine
Verified

Hello,

I am Dr. Arun and will be helping you today.

I am sorry that your question was unanswered for long.

What did your blood tests show?

Was a biopsy of some tissue recommended?

Ask Your Own Health Question
Customer reply replied 2 years ago
I have had more blood Tess than words can say. There are absolutely no indicators that I have an autoimmune disorder. I can't remember all of the test results over the last three years or so that many results we just mildly out of range, so not considered to be a problem. One that particularly bothered me for some reason was my co2 came back slightly abnormal twice. I have so many "abnormal", but again... Not enough to cause alarm. My liver blood work is fine except my BUN is consistently just a little low. They just found in an ultra sound that I have non fatty liver disease. They can't explain it, because it doesn't fit into my healthy life style, so they attribute it to my autonomic dysfunction. I have a cyst on my liver that keeps growing and they just found something on my spleen that I haven't had time to get tested. I Don't know what it is yet. I've only had one routine blood work test come back normal in at least three years. Usually it's my white blood cells, the things that begin with "N and L" are always just a bit low. My thyroid had always tested normal. We were really hoping it was Lyme disease, but my Western blot came back perfect. My heaven metal testing came back fine. My iron is a little backwards?? My doctor said when people have a problem with their iron, it's the exact opposite of what my blood work shows. He was a little baffled. I think the iron is being stored in my liver. They tested me for hymochromatosis, which came back normal.I live in Burlington, VT and I was on a plane coming back, and the poor pilot flew the plane at 5,000 feet for over an hour while I had an oxygen mask on because my pulse ox kept dropping. I'm Really not supposed to fly, and I've gotten away with it until now. I'll be fine if I just bring oxygen with me. It stressed the pilt out, more than me because I was able to see my numbers come up, so I knew I was fine.I walk at a snails pace. My brain won't let my legs go any faster. It's really strange. My kids are really sweet and ask me to just allow my husband or mother to push me in a wheelchair. I have quite a sporty red one, but I won't use it. We all just walk very, very slowly and I carry a stool with me to take breaks st sit. I'm only 48, I'm 5'6" and 124 lbs, I look perfectly healthy, unless I turn white as a ghost with black circles under my eyes. It's very hard to believe I'm in such tough shape if you were to look at me. I've had it written on my charts, "look younger than my age". I ad to write that as a joke. It's the one thing I seem to have going for me.I don't know if you are aware that I have great cholesterol numbers, no blood pressure problems, or diabetes. My blood pressure does tank out sometimes because of my autonomic dysfunction. I randomly checked it, when I was checking my friends. I had no symptoms and my blood pressure while standing was 60/30. I was quite surprised. I don't think that happens often, but I'm not taking my blood pressure very often to know.What type of biopsy where you talking about? Hopefully not on my brain :)I am sending my MRI that was taken at Dartmouth to a specialist in neuro-radiology and autonomic disorders. I'm on my way to Cape Cod today for vacation, so I'lol be gone when the disk gets to my house. I'm going to mail it to them with a complete list of my symptoms. I guess it's just wait and see. It's quite a bummer. I've got a 12 and a 15 year old. My daughter when she was 14 went to high school two days a week and the other days worked full time for the top lobbying firm in the state sitting in senate hearing committee meetings by herself, responsible for certain bills. She feels as if the senators, reps, speaker of the house, lieutenant gov, and gov are raising her. I'm just limping along as best I can, trying to keep up. My son is awesome and brilliant himself. They really love me. They tell me absolutely everything that goes on in their lives. We are a very close family. I hope I don't get bad news. It will really destroy them. I obviously just vented to you. I keep most everything to myself. It's too much of a burden (painful) to dump it on other people. Thanks for listening. Hope I didn't bore you to tears :-). Sue. This is way too long to go back and proof. Sorry for all of the grammatical errors. I'm writing quickly. My daughter would be horrified....
Health Professional: Dr. Arun Phophalia, Doctor (MD) replied 2 years ago

Hello and welcome.

This can be mixed connective tissue disorder which is an autoimmune disorder. But if you have not be investigated for deficiency and metabolic neuropathy; you doctor may get work up for following;

Investigations to ascertain the nutritional neuropathy;

Thiamine (vitamin B 1 ) deficiency: A serum thiamine (vitamin B 1 ) level

Pyridoxine (vitamin B 6 ) level

Folate deficiency: Serum folate levels .

Niacin (vitamin B 3 ) deficiency: Urinary excretion of N -methylnicotinamide

Cyanocobalamin (vitamin B 12 ) level

Pantothenic acid deficiency: Excretion is less than 1 mg/d.

Alpha-tocopherol (vitamin E) deficiency: The serum α -tocopherol (vitamin E) level.

Investigations for metabolic neuropathy:

Hypophosphatemia: Serum phosphate level

Biotinidase levels

Aminolevulinic acid synthase in urine (porphyria)

Arylsulfatase A and B (leukodystrophies)

Hexosaminidases

Urine oxalate levels

Serum lactate, ammonia, and pyruvate

Urine myoglobin

Muscle histochemistry

Enzyme assays of muscle, blood, and fibroblast

Leukocyte glycogen levels to detect acid maltase deficiency

Leukocyte, DNA analyses (McArdle disease)

Please feel free for your follow up questions.

I would be happy to assist you further, if you need any more information.

Thanks for using Just Answer.

Ask Your Own Health Question
Health Professional: Dr. Arun Phophalia, Doctor (MD) replied 2 years ago
Thank you for the opportunity to answer completely your Question. Please make sure to rate me because that is how I am credited for my work.
Now, I will provide an Additional Service offer so that you have this option available on your question list to get a hold of me directly in the future.
This additional service offer can be used for
- if you would like to schedule a new, private email session or to ask me directly a new question. It's up to you.
Thank you.
Ask Your Own Health Question
Was this answer helpful?

How JustAnswer works

step-image
Describe your issueThe assistant will guide you
step-image
Chat 1:1 with a health professionalLicensed Experts are available 24/7
step-image
100% satisfaction guaranteeGet all the answers you need
Ask Dr. Arun Phophalia Your Own Question
Dr. Arun Phophalia
Dr. Arun Phophalia
Dr. Arun Phophalia, Doctor (MD)
Category: Health
Satisfied Customers: 38,436
38,436 Satisfied Customers
Experience: MBBS, MS (General Surgery), Fellowship in Sports Medicine

Dr. Arun Phophalia is online now

A new question is answered every 9 seconds

How JustAnswer works:

  • Ask an ExpertExperts are full of valuable knowledge and are ready to help with any question. Credentials confirmed by a Fortune 500 verification firm.
  • Get a Professional AnswerVia email, text message, or notification as you wait on our site. Ask follow up questions if you need to.
  • 100% Satisfaction GuaranteeRate the answer you receive.

JustAnswer in the News:

Ask-a-doc Web sites: If you've got a quick question, you can try to get an answer from sites that say they have various specialists on hand to give quick answers... Justanswer.com.
JustAnswer.com...has seen a spike since October in legal questions from readers about layoffs, unemployment and severance.
Web sites like justanswer.com/legal
...leave nothing to chance.
Traffic on JustAnswer rose 14 percent...and had nearly 400,000 page views in 30 days...inquiries related to stress, high blood pressure, drinking and heart pain jumped 33 percent.
Tory Johnson, GMA Workplace Contributor, discusses work-from-home jobs, such as JustAnswer in which verified Experts answer people’s questions.
I will tell you that...the things you have to go through to be an Expert are quite rigorous.

What Customers are Saying:

I can go as far as to say it could have resulted in saving my sons life and our entire family now knows what bipolar is and how to assist and understand my most wonderful son, brother and friend to all who loves him dearly. Thank you very much

Corrie MollPretoria, South Africa

I thank-you so much! It really helped to have this information and confirmation. We will watch her carefully and get her in for the examination and US right away if things do not improve. God bless you as well!

ClaudiaAlbuquerque, NM

Outstanding response time less than 6 minutes. Answered the question professionally and with a great deal of compassion.

KevinBeaverton, OR

Suggested diagnosis was what I hoped and will take this info to my doctor's appointment next week.
I feel better already! Thank you.

ElanorTracy, CA

Thank you to the Physician who answered my question today. The answer was far more informative than what I got from the Physicians I saw in person for my problem.

JulieLockesburg, AR

You have been more help than you know. I seriously don't know what my sisters situation would be today if you had not gone above and beyond just answering my questions.

John and StefanieTucson, AZ

I have been dealing with an extremely serious health crisis for over three years, and one your physicians asked me more questions, gave me more answers and encouragement than a dozen different doctors who have been treating me!!

Janet VPhoenix, AZ

< Previous | Next >

Meet the Experts:

Family Physician

Family Physician

Doctor (MD)

5,660 satisfied customers

Emergency Medicine and Family Practice for over 26 years

Dr. Ketch

Dr. Ketch

Doctor

102 satisfied customers

Medical Degree, Former Assistant Professor at School of Medicine at Yale University

DrRussMD

DrRussMD

Doctor (MD)

5,096 satisfied customers

Practice Director

Dr. Arun Phophalia

Dr. Arun Phophalia

Doctor (MD)

38,436 satisfied customers

MBBS, MS (General Surgery), Fellowship in Sports Medicine

Dr. Chip

Dr. Chip

Doctor (MD)

14,249 satisfied customers

Over 20 yrs of Family Practice

Dr. Mark

Dr. Mark

Doctor (MD)

6,253 satisfied customers

U.S. Physician/Surgeon in Neurosurgery

Dr. Gupta

Dr. Gupta

Doctor (MD)

5,053 satisfied customers

Vastly experienced MD Physician with 19 years of experience.

< Previous | Next >

Related Health Questions
Bowels aren't working. Not having movements, my dr.took me
Not having movements , my dr.took me of fiber and on milk of magnesia till I clear then Mira lax after … read more
Dr. Arun Phophalia
Dr. Arun Phophalia
Doctor (MD)
38,436 satisfied customers
I was looking for information about a pain i have on my left
I was looking for information about a pain i have on my left side, below the ribs and above the hip. It has been there for over a year … read more
Dr. Arun Phophalia
Dr. Arun Phophalia
Doctor (MD)
38,436 satisfied customers
I can not go to the toilet usually It takes me almost one
I can not go to the toilet usually It takes me almost one week to go once … read more
Dr. Arun Phophalia
Dr. Arun Phophalia
Doctor (MD)
38,436 satisfied customers
My daughter is 14 years old and was diagnosed last year with
.My daughter is 14 years old and was diagnosed last year with mono and this year with CMV. she has constant stomach issues and recently headaches. She doesnt eat right and has a hard time waking up in… read more
Dr. Arun Phophalia
Dr. Arun Phophalia
Doctor (MD)
38,436 satisfied customers
I have a almost 12 year old son who has been having
Hello!! I have a almost 12 year old son who has been having abdominal stabbing pains on both sides and said it hurts on both sides and also hurts on upper right side and he has been this kind of pain … read more
Dr. Arun Phophalia
Dr. Arun Phophalia
Doctor (MD)
38,436 satisfied customers
Second opinion] - my thighs have been feeling shaky, weak,
Second opinion] - my thighs have been feeling shaky, weak, numb, heavy, and spastic for about 2 years. The symptoms have been getting worse and lately my legs have been hurting. … read more
Dr. Arun Phophalia
Dr. Arun Phophalia
Doctor (MD)
38,436 satisfied customers
Constipated with no urge even taking laxatives doesn't help
Constipated with no urge even taking laxatives doesn't help I have diverticulitis could this be causing it or something else I take Metamucil caps every day … read more
Dr. Arun Phophalia
Dr. Arun Phophalia
Doctor (MD)
38,436 satisfied customers
My daughter has had trouble with nausea and dizziness and
My daughter has had trouble with nausea and dizziness and flushing for years. We have taken her to numerous doctors and every test comes back normal. She has period when she is so sick and in pain she… read more
Dr. Muneeb Ali
Dr. Muneeb Ali
Senior Registrar Critical Care Medicine
Doctoral Degree
8,363 satisfied customers
Type Your Question Here... my question is: how do I solve a
Type Your Question Here... my question is: how do I solve a very long period of constipation?… read more
Dr. Arun Phophalia
Dr. Arun Phophalia
Doctor (MD)
38,436 satisfied customers
FOR DR. ARUN ONLY PLEASE. ON-GOING DISCUSSION. THANK YOU.
FOR DR. ARUN ONLY PLEASE. THIS IS AN ON-GOING DISCUSSION. THANK YOU. Dear Dr. Arun, I am having a very diffiult time finding a lab to do the Porhyria urine test. I spoke to someone on the telephone to… read more
Dr. Arun Phophalia
Dr. Arun Phophalia
Doctor (MD)
38,436 satisfied customers
Dear Dr. Arun, I emailed Just Answer about the reply
Dear Dr. Arun, I emailed Just Answer about the reply problem. Of course, I didn't mention your name. Their prompt response seemed to indicate they are not aware of it and that they think my expert was… read more
Dr. Arun Phophalia
Dr. Arun Phophalia
Doctor (MD)
38,436 satisfied customers
I was wondering How can I gain weight naturally??? I'm 25
Hello, I was wondering How can I gain weight naturally??? I'm 25 years old male, 5'8. For 7years i been stuck to 125pounds,I've never gained a single pound ever since...what would you recommend for me… read more
Dr. Arun Phophalia
Dr. Arun Phophalia
Doctor (MD)
38,436 satisfied customers
I was born with constipation and have had nothing but
I was born with constipation and have had nothing but problems all my life here are my symptoms : extremely Hard very large oddly shaped stool, Difficulty passing stool,Straining to pass stool,Bloatin… read more
Dr. Arun Phophalia
Dr. Arun Phophalia
Doctor (MD)
38,436 satisfied customers
I have an excessive amount of iron in my blood which is not
I have an excessive amount of iron in my blood which is not caused by hemachromatosis - what else could be causing this abnormaility and what does it do to your body...?… read more
Dr Basu
Dr Basu
Physician
Doctoral Degree
11,307 satisfied customers
I am having severe left lower quadrant abdominal pain for
I am having severe left lower quadrant abdominal pain for the last 2 months. It started about 4 months ago,and got better for awhile, where tylenol and ibuprofen helped with the pain. At that time, I … read more
Dr. D. Evans
Dr. D. Evans
Consultant, Head and Neck Surgery
MD
2,478 satisfied customers
I am asking a question about my wifes health. She has severe
I am asking a question about my wifes health. She has severe abdominal pain just below her sternum. We live in a little town and we have seen every doctor here. We have aslo seen specialist's in Denve… read more
Dr. Gupta
Dr. Gupta
Doctor (MD)
Post-Doctoral Degree
5,053 satisfied customers
All i know is that this runs in my dads side of the family.i
all i know is that this runs in my dads side of the family.i just want to know what it is?… read more
Pauline
Pauline
Doctor
Bachelor Degree
776 satisfied customers
This may be a unique medical problem, but I hope you can
This may be a unique medical problem, but I hope you can help me with it. When I was age 13 or 14 (I'm now a 19 yr. old male) I started using digital stimulation to go to the bathroom. I know suffer f… read more
PvtCareDr
PvtCareDr
General Physician
706 satisfied customers
Disclaimer: Information in questions, answers, and other posts on this site ("Posts") comes from individual users, not JustAnswer; JustAnswer is not responsible for Posts. Posts are for general information, are not intended to substitute for informed professional advice (medical, legal, veterinary, financial, etc.), or to establish a professional-client relationship. The site and services are provided "as is" with no warranty or representations by JustAnswer regarding the qualifications of Experts. To see what credentials have been verified by a third-party service, please click on the "Verified" symbol in some Experts' profiles. JustAnswer is not intended or designed for EMERGENCY questions which should be directed immediately by telephone or in-person to qualified professionals.

Disclaimer: Information in questions, answers, and other posts on this site ("Posts") comes from individual users, not JustAnswer; JustAnswer is not responsible for Posts. Posts are for general information, are not intended to substitute for informed professional advice (medical, legal, veterinary, financial, etc.), or to establish a professional-client relationship. The site and services are provided "as is" with no warranty or representations by JustAnswer regarding the qualifications of Experts. To see what credentials have been verified by a third-party service, please click on the "Verified" symbol in some Experts' profiles. JustAnswer is not intended or designed for EMERGENCY questions which should be directed immediately by telephone or in-person to qualified professionals.

Show MoreShow Less

Ask Your Question

x