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**Aknight** · 07-05-2015, 10:56 PM

Forgot to add...

I forgot to add that I spoke to my endocrinologist about the possibility of my thyroid diseases causing my symptoms, and she shut that down immediately. I don't know if that's because she didn't care to look or if she really believed my symptoms couldn't be related.

Another thing- when I spoke to the woman with MS she asked me if I ever take hot showers. I explained to her that I do, I actually love hot showers, but they make me very tired so I'll often lay down for a bit afterward to cool down. She told me she gets very worn out by hot showers as well and that her neurologist told her that was an MS specific symptom.

**SNOOPY** · 07-06-2015, 12:09 PM

Hello Aknight and welcome to MSWorld.

One thing that should be considered is medication side effects. What first caught my attention was your diagnosis of Hyperlipidemia. I am assuming you have high cholesterol and are on a Statin? If this is true the Statin would need to be a serious consideration for your memory loss/brain fog, muscle pain/weakness, extreme fatigue and many of the other symptoms you have mentioned.

Information about Statin side effects:
http://www.mayoclinic.org/diseases-c...s/art-20046013

You may want to research side effects on all of the medications you are taking to see if they might be responsible for your symptoms.

**Aknight** · 07-06-2015, 01:21 PM

Thank you for your reply, and the link you posted Snoopy. I didn't know all of those side effects were possible with that medication, and yes I am on Atrovistatin.

I assume that that could definitely be related but I don't think it's the full cause of my symptoms for 1 reason-

When my symptoms started I wanted them gone, so I quit smoking cold turkey, lost 60 lbs in 6 months and was able to stop taking the cholesterol meds because my numbers were finally normal again. My symptoms never went away with that unfortunately.

I am however now back up with my weight (though still not smoking), and back on statins now. I have to be honest and say I was so disappointed that that didn't even stop my symptoms (particularly my numbness which is my most predominant symptom) that I stopped caring and gained the weight back.

**SNOOPY** · 07-06-2015, 02:25 PM

Hi Aknight,

Thank you for your response. I'm sorry you have gained the weight back, it can be so depressing when that happens. I hope you are aware that Polycystic Ovarian Syndrome (PCOS) makes it difficult to losing weight and difficult in keeping it off. Many women that have PCOS are also obese.

I have to be honest and say I was so disappointed that that didn't even stop my symptoms (particularly my numbness which is my most predominant symptom) that I stopped caring and gained the weight back.

The issue of numbness could be a result of your c-spine bulge. My husband had a bulging disc and it caused weakness, numbness, tingling and severely affected his mobility.

Information about bulging disc:
https://www.laserspineinstitute.com/...ing_disc/neck/

Have you had blood work done to rule out a vitamin/mineral deficiency? A vitamin B-12 deficiency can cause Neurological symptoms.

The other day I spoke to someone with diagnosed MS who told me that it not only took 5 years for her MS to show up on an MRI but also that she was diagnosed through a spinal tap and CSF analysis.

Some take years to receive a diagnosis of MS and some receive a diagnosis quickly. Diagnosing MS is based on medical history, neurological exam, testing and the Diagnostic criteria.

The diagnostic criteria for Multiple Sclerosis is The McDonald Criteria.

http://www.nationalmssociety.org/Nat...osis-of-MS.pdf

http://www.nationalmssociety.org/Sym...ns-to-Rule-Out
http://www.nationalmssociety.org/Sym.../Diagnosing-MS

when I spoke to the woman with MS she asked me if I ever take hot showers. I explained to her that I do, I actually love hot showers, but they make me very tired so I'll often lay down for a bit afterward to cool down. She told me she gets very worn out by hot showers as well and that her neurologist told her that was an MS specific symptom.

Many, many, many years ago MS was diagnosed with the "hot bath tub" test. They would put a person in a tub of hot water and if they couldn't walk or had difficulty walking a diagnosis of Multiple Sclerosis was made. Thank goodness for newer medical technology

For a person that has a diagnosis of MS the effects heat has on them is definitely due to the disease process. This would not be MS specific for a person not diagnosed with MS. Heat intolerance can happen to anyone for many different reasons.

**jreagan70** · 07-06-2015, 06:41 PM

Hi Aknight:

There are a couple of things that come to mind about your situation.

First is the automatic assumption that you have MS based on symptoms alone.

There are no symptoms that are unique to MS. The same symptoms occur in many other conditions. So when someone says that you have the symptoms of MS, the most they can really say is that you have neurological symptoms, and MS is one of the possible causes of those neurological symptoms. That's what doctors mean when they say that someone has symptoms of MS, and I wish they wouldn't do that because it can cause some misunderstanding later on.

And someone who doesn't really know much about medical conditions will mean that MS is the only condition they know of that causes neurological symptoms, so anyone who has those symptoms must have MS. And that, of course, is wrong.

And Internet searches are somewhat misleading as well, because no matter what kind of weird or even benign neurological symptoms a person searches for, MS always comes up as a possibility. ALWAYS. And because it always comes up as a possibility, too may people just assume -- based only on vague generalities they read -- that they have MS.

What people overlook is the fact that there has to be EVIDENCE of MS in order for it to be diagnosed. But because it's the first possibility they read about or hear about, they assume -- based on nothing but generalities -- that MS is what they have. And because they've already convinced themselves that they have MS, they're absolutely SHOCKED when their test results come up negative. And then they can't understand how that could happen because the Internet and other people have said that they have "all the symptoms" of MS. But symptoms aren't a diagnosis.

MS, like other diseases, has diagnostic criteria. In MS, the criteria rely heavily on evidence of lesions on MRI that are typical of MS. (Nonspecific lesions alone don't count.) There also has to be evidence of dissemination of lesions and/or clinical evidence typical of an MS attack across time and space. And because your MRI is negative for MS lesions, your VEP is normal, and possibly your symptoms didn't present in a manner typical of MS, your neurologist has stopped pursuing MS as a diagnosis for now. You cannot be diagnosed with MS based on general symptoms alone. Nor would you want to be.

If you really feel strongly about it, you can press your neurologist for a lumbar puncture and somatosensory evoked potentials. But even if positive, both tests are nonspecific and can't by themselves lead to a diagnosis of MS.

Another criterion for the diagnosis of MS is that all other possibilities for signs and symptoms must be ruled out. And based only on what you've shared so far, that probably hasn't been done. So...

The second issue is the dismissing of the possibility that your symptoms are coming from conditions you're already known to have and attributing them to MS, which you currently don't have objective evidence of.

You said you have chronic migraines. Migraines can cause many of the symptoms you've described:

Pain on one side or both sides of the head
Blurred vision and vision loss
Sensitivity to light, sounds and sometimes smells
Pins and needles sensations in an arm or leg
Fatigue
Depression

http://www.mayoclinic.org/diseases-c...s/con-20026358

The bulging disc can be putting mechanical pressure on your spinal nerves, causing any of the other symptoms you have: weakness in your legs, urinary issues, and muscle pain in your back, arms and legs.

You already have conditions that could account for your symptoms, so it would be a good idea to have a deep discussion with your neurologist about why your symptoms are or aren't coming from those known conditions.

Another important aspect is that many of your symptoms aren't presenting in a way typical of MS. The body is wired in neurological pathways, much like the way your house is wired in circuits powering different rooms. If there's a short circuit affecting, say, the wiring in your kitchen and laundry room, the power to your bedrooms won't be affected. The bedroom circuit would have to also have a problem for there to be a problem there.

MS generally doesn't strike with lesions on all nerve pathways (circuits) all over the body at the same time. So the more body-wide the symptoms are early on, the less likely the problem is to be MS. That doesn't mean that there can't be lesions all over the central nervous system all at the same time, but it usually doesn't happen that way. So while it can take a while for lesions to show on an MRI, the greater the number of lesions necessary to be causing the symptoms, the less likely it is that NONE of them will show up on MRI. And your MRI didn't show any of what would have to be numerous lesions after 3 years.

So it makes more sense to start looking at conditions that CAN cause body-wide symptoms. Migraine is one. Chronic fatigue syndrome is another.

If you look at the symptoms of CFS, they also sound very much like what you're experiencing:

Increased malaise
Brain fog
Difficulties with memory and concentration
Persistent muscle pain
Joint pain
Visual disturbances (sensitivity to light, blurring, eye pain)
Depression or mood problems (irritability, mood swings, anxiety, panic attacks)

http://www.cdc.gov/cfs/symptoms/index.html

It sounds like there are several possible conditions that should be looked into as causes of your symptoms that may be more likely than MS.

It's important not to put attention on MS just because someone -- even your doctors, but especially one person with MS you spoke to -- or an Internet search suggested the possibility of MS based on symptoms alone and it's the first thing you heard. As you can see, you already have possible explanations for some of them, and there are more possibilities. In other words, don't go home with the first disease that smiled at you at the dance.

Due to lack of evidence, your neuro has -- justifiably -- taken MS off the table. I hope you can have a serious discussion with your neurologist and other doctors about those possibilities and maybe get some answers about what's going on with you.

**alanpgh** · 07-06-2015, 09:47 PM

_{Have you seen an MS Specialist? That might help with a diagnosis or to rule out MS.

You can often get in to see an MS Specialist for a second opinion.

Best Wishes!

Alan}

**alanpgh** · 07-06-2015, 09:53 PM

Find an MS Specialist in your area

This link might help you find an MS Specialist in your area:
http://www.msworld.org/forum/showthr...t-in-your-area!

All The Best,
Alan

**Aknight** · 07-07-2015, 12:33 PM

I want to thank you all very much for your answers.

Mostly I want to thank you, because your responses have brought me relief in the idea that it's unlikely that my symptoms could be caused by MS.

I was was pretty horrified the first time that was mentioned as a possibility, and afterward it definitely seemed like my symptoms were headed in that direction.

Alan, I have to see my neurologist every few months for now anyway. I don't believe she is technically an "MS specialist", but she does seem to know what she's doing. I trust that she is trying her best to help me.
If the need comes I may look for an MS specialist.

Thank you all for your replies, sincerely.

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Definitely in limbo land, and unsure where to go from here..?

Definitely in limbo land, and unsure where to go from here..?

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