The (going slightly) Mad Scientist

Good Morning Bleeps.

I am on a mission today, I am going to research every MS mimic that I can and so today I have put on my scientist coat.

I have already been ruled out for the obvious ones such as Lyme and B12 deficiency via blood tests so I have decided that since I am not back to my Neuro until April to do some more research. Since my Doctor went back on the fence and changed my diagnosis to Probable MS in January (after I was officially diagnosed in December) I have been left in a horrible place of "what if".

What if all the other tests come back negative/normal? What if the Neurologist can't explain what is wrong with me? What if my symptoms get worse and I have nowhere to turn? What if, what if?!

Of course nobody WANTS to be told they have MS but personally I think being left in limbo is worse. Somebody recently commented that the only difference between getting an official Dx of MS versus one of Probable MS is merely documentation. I totally agree however without the i's being dotted and the t's crossed I dont get an MS nurse or any medical support. I need it to be definitive and so today I am going to try to get one step ahead of the game in the event that the further tests come back with nothing.

You might want to grab a cup of coffee or something as this one is going to be long, not that my blogs are ever really short as one thing that I know I suffer with is verbal diarrhoea.

I am researching what other conditions can mimic MS but only the ones that have the presence of MS-like lesions of the brain's white matter on the MRI, which is what I have. So the first one I have come across is:

Polyarteritis Nodosa.

Reading the information on this illness, I think that SOMETHING would have shown up in my blood tests so I think I can safely rule it out. Also, another major symptom of this one is that there is usually a weight loss of equal to or greater than 4.5kg. I wish!!!! I have gained weight and am struggling to get it off (thanks heavy, tingly, exercise hating legs).

Next I come to:

Lupus erythematosus

Now this one rings more true to me on the symptom list (I will say yes or no where applicable).

• Common symptoms include: Chest pain when taking a deep breath - Sometimes and that is why I am under a cardiologist.
• Fatigue - always (but a very common MS symptom too)
• Fever with no other cause - no, not this one.
• General discomfort, uneasiness, or ill feeling (malaise) - every day!
• Hair loss - YES!! I even blogged about it.
• Mouth sores - Nope.
• Sensitivity to sunlight - Never, I LOVE the sun although I haven't been in it since my symptoms kicked in bad. 
• Skin rash -- a "butterfly" rash over the cheeks and bridge of the nose affects about half of people with SLE. The rash gets worse in sunlight. The rash may also be widespread. - No
• Swollen lymph nodes  - No

Other symptoms depend on what part of the body is affected:

• Brain and nervous system: headaches, numbness, tingling, seizures, vision problems, personality changes - YES!
• Digestive tract: abdominal pain, nausea, and vomiting - right-side abdominal pain and nausea but no vomiting.
• Heart: abnormal heart rhythms (arrhythmias) - yes, again under cardiologist.
• Lung: coughing up blood and difficulty breathing - no blood but trouble getting enough air in my lungs sometimes. I always put this down to an MS Hug.
• Skin: patchy skin color, fingers that change color when cold (Raynaud's phenomenon) - Yes, suffer from Raynauds often.

Hmmm, so where does that leave me with that one? Quite a few yes answers here, will keep this in my top pocket in case I need further investigation. I am sure you don't have to tick all boxes on a symptoms list do you?

Syringomyelia

This one is a condition in which a cyst forms within the spinal cord, I will wait to see what my spine MRI shows but this one doesn't ring true for me either.

Other conditions that are listed but just dont sit right for me or would have shown up in one the billion blood tests I have had are:

• Tropical spastic paraparesis 
• Some cancers 
• Certain tumors that compress the brainstem or spinal cord. 
• Progressive multifocal leukoencephalopathy 
• Stroke 
• Neurosyphilis 
• Spinocerebellar ataxias 
• Pernicious anemia 
• Diabetes 
• Sjogren's disease 

As you can see I am going around in circles and perhaps a bit mad. The thing is, I am sat here with my body doing weird and whacky stuff with no definitive answer as of yet. I was happier in December when my Neurologist said that yes, it is MS. I least I KNEW! Now that my diagnosis has changed but my symptoms haven't it is so frustrating. I just want answers and I want them now. I am not a patient person, never have been. I am impulsive, head strong and basically a typical Leo. All of this waiting and wondering is driving me bonkers.

I want to know if this is as bad as it is going to get? Will I wake up one day and it all be gone? I know there are no guarantees in life and I don't expect one but just a nod in the right direction would be very welcomed. I am SURE everyone will tell me to just wait for my test results and then do all this research if they come up with nothing but it isn't in my nature. I don't know how to quiet the control freak within when I feel totally out of control?

I am sure anyone that has been through this process will understand.

So enough about me, how are YOU?