Hello Everyone -

[Littlebean]

Hi,
First of all, thank you all for being here, and allowing me to join Please excuse the length of my post. I have no one to talk to.

It's nice to know there is a spot for those of us stuck in limbo... and that's where I'm at. Google is not my friend.

I am a 37 year old mom, who has been dealing with autoimmune diseases since 2008. I have some obscure form of colitis, usually only found in elderly women. (collagenous colitis). I was also diagnosed six months post partum with hashimoto's thyroiditis, causing me to go very hypo. (in 2013).

The hypo is fairly well controlled, the hashimoto's antibodies are still off the charts. The colitis is not controlled. I tested negative for celiac many times. My MD has listed "systemic connective tissue disease on my chart - I have no idea what that is.

Since February of 2013 I have suffered from moderate to severe lumbar pain, with radiculopathy. It was managed well with steroid injections until 10/2014. Then it all went to ... well, I ended up having a fusion 2/2015 with decompression.

My recovery has been a bear. In July, I developed the pins and needles in my left foot, where it was just my right prior to surgery. My back pain is awful. I try not to take pain killers, as I have a 3 year old, and am with him all day four days per week. I am uncomfortable some days being home alone with him, or even taking him to the playground, for fear my feet won't cooperate in an emergency. I fall.

In July, I also developed what can only be described as a brain fog. I cannot complete tasks. I have difficulty finding the right words often. This is incredibly frustrating to me, as writing and speech have always been my passion. With the brain fog came this weird tingling in my right hand, and upper lip - the upper lip is almost like an allergic reaction. (though I know I haven't eaten any shellfish!) I've started to drop things. The most recent symptom is very tight painful hands.

Now, I have the most thorough nurse practitioner I see at my GP's office, who has ruled out vitamin deficiencies, Lyme, etc. She sent me for an MRI last week of my brain and called me Monday with the results. I know it's not good when she calls, and doesn't have the nurse call.

Few, scattered foci of T2 prolongation in the periventricular and

subcortical white matter, in the bilateral frontal lobes.

Differential considerations include migraines, demyelinating process,

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microangiopathy, and other infectious/ inflammatory processes.

I have an appointment with a neurologist tomorrow, as I've been waiting 8 weeks. She told me with my symptoms, and the results of the MRI, it was best to see what he says. I do not suffer from migraines. I live outside of Boston, and if I don't get a good answer from him, will go to one of the Boston Hospital's MS centers, just for piece of mind. I also have an EMG with a neurosurgeon, as my ankle reflex and strength has not returned post surgery.

I am nervous.

Should the neurologist want further studies, do they often go to evoked potentials? Or a lumbar puncture? I am incredibly nervous. I am a worrier. (could you tell?) I guess I'm just looking for an ear, or some similar stories. I don't have much support from my husband. He thinks it's my meds, my thyroid, etc. (that's another story.)

Thanks for listening, and I apologize for the length.

[Littlebean]

I apologize about the font. That's what I get for typing on a phone

[SNOOPY]

Hello Littlebean and welcome to MSWorld

I have an appointment with a neurologist tomorrow, as I've been waiting 8 weeks.

How did your Neurology appointment go?

[Littlebean]

Thanks for asking after me, and the welcome, Snoopy.

The appt. did not go well. He told me my MRI was normal, and dismissed my constant nerve pain as "anxiety and depression."
That's new to me! I have a pretty strong background in psychology and never knew depression causes neuropathy.

oh well. I guess they all didn't graduate in the top 25% of their class...

[Poppy7402]

With your thyroid issues and negative Celiac blood tests, have you investigated Non Celiac Gluten Sensitivity? There are many of us who test negative for Celiac but who definitely have some issues with gluten.

Although gluten may not be all of your answer, there is much written about the effect of gluten sensitivity on thyroid and neuropathy. Professor Marios Hadjivassiliou from Sheffield in the UK is one of the leading researchers in this area and has written several good articles, as have Alessio Fasano and David Perlmutter among others.

[Littlebean]

I have given the GF diet a go; and an very close to it again. I fell off the wagon after surgery. I'd been at it for a year.
I'm very familiar with the autoimmune / gluten connection. One of my most read books as of late is "the immune system recovery plan" by Susan Blum. I highly recommend it.
I will definitely do some reading up on your suggestion too, to get me back on track
thank you.

[jreagan70]

He told me my MRI was normal, and dismissed my constant nerve pain as "anxiety and depression." That's new to me! I have a pretty strong background in psychology and never knew depression causes neuropathy.

Depression doesn't cause overt neuropathy. But depression, anxiety and pain are all controlled by the brain's limbic system. Because depression and pain are controlled by the same area of the brain, depression is frequently accompanied by pain, and pain is frequently accompanied by depression. They can and do go together.

That was the basis of the early marketing campaign for Cymbalta: basically, when you treat depression, you treat the aches and pains that go along with it, so Cymbalta treats both depression and pain. Later, the FDA approved Cymbalta as a pain reliever.

I am incredibly nervous. I am a worrier. (could you tell?)

The neurologist wasn't correct that all of your chronic pain is coming from depression and anxiety. But, with your limbic system having to handle your anxiety, it has to concurrently handle your chronic pain. And the way limbic systems do that often leads to a lowering of pain thresholds. So your anxiety isn't necessarily causing your pain, but it very well may be causing your perception of your pain to be worse.

That's anatomy and physiology, and something that psychology by itself doesn't explain. The neurologist wasn't wrong about that part, he's just wrong about how to treat it. It's not the answer, but it's still something you'll have to deal with as part of your other health issues.

Anxiety is also notorious for causing brain fog. Brains deal with anxiety by shifting blood and energy away from cognitive functions to deal with fear, anxiety and the perception of physical danger. Brains can't be calm and anxious at the same time. Being "incredibly nervous" has to be dealt with in looking for causes of cog fog.

I am a 37 year old mom, who has been dealing with autoimmune diseases since 2008. I have some obscure form of colitis, usually only found in elderly women. (collagenous colitis). I was also diagnosed six months post partum with hashimoto's thyroiditis, causing me to go very hypo. (in 2013). The hypo is fairly well controlled, the hashimoto's antibodies are still off the charts. The colitis is not controlled. I tested negative for celiac many times. My MD has listed "systemic connective tissue disease on my chart - I have no idea what that is. Since February of 2013 I have suffered from moderate to severe lumbar pain, with radiculopathy. It was managed well with steroid injections until 10/2014. Then it all went to ... well, I ended up having a fusion 2/2015 with decompression.

All of those are complicating factors that will have to be taken into account in an evaluation for MS. The diagnostic criteria for MS require that all other possible causes for the signs and symptoms must be ruled out.

Your history of fusion surgery can, by itself, explain your lumbar and leg issues. There will have to be something remarkable found for MS to override that as the primary suspect. And the lesions on your MRI are nonspecific. MS lesions tend to look a particular way. And because your lesions apparently don't look like MS lesions, they don't easily fit that need for something remarkable.

Differentials include inflammatory processes, which include whatever is causing your colitis and connective tissue disease. Again, something in particular would have to be found to make MS override that inflammation as the primary suspects of inflammatory lesions.

You said you don't "suffer from migraines." Although most migraines include head pain, migraine doesn't mean "headache." Migraine is a vascular/chemical phenomenon that can occur without pain. Migraines can cause damage without pain -- they're called "silent migraines." That's why migraine and microangiopathy are on the list of differentials for your nonspecific brain lesions. They can't be ruled out only because you don't have headaches or the kinds of headaches you think of as being a "migraine."

There are scientific bases for everything you'd like to rule out, even what the latest neurologist said. So I think your idea to see an MS specialist is a good one. Your case is complicated, and a general neurologist usually doesn't have enough experience with complicated cases to know what to do with inflammatory complications.

When you see an MS specialist, it will be extremely helpful for you to have the results of a current rheumatology workup for him/her to be able to refer to immediately. I wish you all the best on your journey.

[Littlebean]

Thank you so very much for such a thorough and thoughtful response. You are the first person to take the time to get into details with me.
I am currently regrouping and trying to wrap my head around all of this. It's terribly frustrating to get brushed off by a specialist. I. Am just hoping for someone to take me seriously and stop dismissing me as "depressed". Now I see how it all pieces together. Thank you so much. You don't know how helpful your response was to me.