Searching for Diagnosis for 10 Years

[PacificPink]

Hello all!!

I'm going to try not to ramble and make this easy to read so you don't get bored before you get to the end.

I have been having symptoms for 10+ years. I will list below.
I am currently seeing a new Neurologist (my 5th so far), who is about to give up, just as they all have.
I'm 36 years old, born and raised in the Northwest. My symptoms are becoming worse as of the past year and with two children at home, I'm becoming increasingly desperate to find a diagnosis in order to get treatment so I may live life with my family as normally as possible.

To be clear in advance, I do NOT have a B-12 Deficiency.

Family History
All on Maternal Side:

3 Aunts have MS
2 Cousins with MS
1 Uncle with MS
1 Cousin with ALS
1 Aunt with ALS
My mom has Rheumatoid Arthritis


Symotoms:

Heat Intolerance
Dizziness/Vertigo
Blurred Vision in Right eye Only
Extreme Fatigue
Memory Loss
Cognitive Function Issues
Constant Headaches
Facial numbness
Numbness and tingling in extremeties
Strange sensations on skin (crawling feeling, cold sensation, wet sensation)
Heart Palpitations
Leg cramps
Muscle twitching/jerking/cramping
Arm and leg weaknedd (suddenly unable to hang on to things and will drop them or will suddenly lose ability to write/type mid-sentence)
Swallowing Difficulties
Stabbing/tearing/squeezing pain in chest
Bladder control issues (urgency, frequency, etc.)
Constipation
Smelling things (strongly) hat no one else smells (gasoline, fruit loops)
Aspirin taste in mouth


I have had three MRIs done within the last 5 years. (The last two done this month) They have all come back with no signs of demyelinating disease. No tumors or anything else.

ALL bloodwork came back normal.
Vitamin D is Fine
B-12 is fine
Negative ANA
Negative Sjogrens
Negative Lyme Disease
EMG came back fine
Sleep Test came back fine
EKG came back fine
Nerve Function Test Came back fine
A huge gamut of testing has all come back normal. The neurologist is scratching her head and giving up. They ALWAYS give up.

My cousin and one of my aunts went through this same wild goose chase of medical testing before finally getting a diagnosis. They all say my symptoms are very much like thier own and they are sure I'm dealing with the same thing and if I were to only get started on some treatment, I would be back to as normal as possible in no time. My cousin lives a beautifully normal life, works full time, takes care of her family and is in perfect health, except her weekly injections to keep her that way. She is sure that I have the same symptoms as her and could live a full life as she does, if I can only get treatment. Wouldn't that be wonderful!!

So I'm here, scouring the boards, hoping to see something familiar. Looking for someone (outside my own family) to tell me if I seem to be on the right track or if I'm barking up the wrong tree thinking it's MS.

For anyone who read this all the way through: THANK YOU!
I'm super frustrated and after ten years, I am no closer to figuring out why all of this is happening, and it's just getting worse.........

[ElliotB]

Sorry you and your family members are having such a tough time.

Have the Neurologists you have been seeing been specialists in MS? Is there a Cleveland Clinic near you or are you able to travel to one (their neurological department will see anyone within a couple of days)?

Keep in mind that there are about 400 illnesses that mimic the symptoms of MS. And sometimes MS can be difficult to diagnoses, especially with clean MRIs.

[PacificPink]

Thanks for the reply.

Looks like I'm nowhere near a Cleveland Clinic. I'm in Oregon. =)

My current Neurologist is not an MS Specialist, unfortunately. My current insurance is REALLY bad, and I don't have a lot of options on whom I can see. I had seen two really good MS Specialists before (one happened to diagnose and treat my cousin) but they both gave up. I was told my case was too difficult. I just wish I could find someone who enjoyed a challenge! =)

[ElliotB]

A couple of suggestions...

First, contact the nearest Cleveland Clinic and see if they take your medical insurance. If they do, it will be worth the trip to see them. You will get the right answers quickly.

Second (if the above is not an option), contact your insurance company to see if they can assist you to find the 'right' doctor for you. You are probably wasting more of your time seeing neurologists that do not specialize in MS.

If you don't mind me asking, how is your health overall (aside from the description already provided)? How is your weight? Do you follow any kind of diet and/or exercise program? Are you doing anything else to insure you are as healthy as possible?

[lyndacarol]

Family History
All on Maternal Side:

3 Aunts have MS
2 Cousins with MS
1 Uncle with MS
1 Cousin with ALS
1 Aunt with ALS
My mom has Rheumatoid Arthritis


Symotoms:

Heat Intolerance
Dizziness/Vertigo
Blurred Vision in Right eye Only
Extreme Fatigue
Memory Loss
Cognitive Function Issues
Constant Headaches
Facial numbness
Numbness and tingling in extremeties
Strange sensations on skin (crawling feeling, cold sensation, wet sensation)
Heart Palpitations
Leg cramps
Muscle twitching/jerking/cramping
Arm and leg weaknedd (suddenly unable to hang on to things and will drop them or will suddenly lose ability to write/type mid-sentence)
Swallowing Difficulties
Stabbing/tearing/squeezing pain in chest
Bladder control issues (urgency, frequency, etc.)
Constipation
Smelling things (strongly) hat no one else smells (gasoline, fruit loops)
Aspirin taste in mouth


I have had three MRIs done within the last 5 years. (The last two done this month) They have all come back with no signs of demyelinating disease. No tumors or anything else.

ALL bloodwork came back normal.
Vitamin D is Fine
B-12 is fine
Negative ANA
Negative Sjogrens
Negative Lyme Disease
EMG came back fine
Sleep Test came back fine
EKG came back fine
Nerve Function Test Came back fine
A huge gamut of testing has all come back normal. The neurologist is scratching her head and giving up. They ALWAYS give up.

Welcome to ThisIsMS, PacificPink.

Like ElliotB and all the rest of us here, I am so sorry that you and your family members are dealing with this diagnosis/symptoms.

Your doctors have certainly been busy investigating the possible culprits. You are fortunate to have found medical professionals who have tried their best. As ElliotB has said, there are many conditions that share your symptoms. After other possibilities have been ruled out, you may very well be left with the diagnosis of MS.

When you say, "ALL bloodwork came back normal," I wonder if that bloodwork included any nutrient testing – for example, copper, iron, magnesium, zinc. I wonder if there could be a malabsorption problem in your digestive tract. Maybe it would be useful to test for gluten sensitivity/celiac disease – celiac disease can cause neurologic symptoms.

Most of us have not found answers easily; we understand your frustration only too well. We wish you all the best.