MS symptoms return after 4 yrs?

[kitkat67]

Hi to all,
I was very active on this forum about 4-5yrs ago, searching for answers to my unexplained symptoms.

After going through the gamut of testing for diseases to rule out MS, I was referred to a rhuemotologist and given a diagnosis of Fibromyalgia/CFS/ Spinal Stenosis/ arthritis.

He was very attentive to me and even wrote a letter to support my SSDI claim. After 3yrs. showing stability, he told me to go back to my GP from there on out to have meds. taken care of.

Anyway, after that I kept doing what I was doing to maintain my apparent stability. Then the bottom fell out!

We lost our home to foreclosure, which threw me into a tailspin. I also am Bi-polar, and depression set in. I know deep depression can make your pain worse. But, I didnt have a Dr. to go to , in order to get medication to manage my pain.

After a few months of being in constant pain, I decided the only way , was to take myself out. That was the first of 3 attempts to commit suicide. Obviously, I failed and am now on meds to help with the suicidal thoughts. While in the looney bin, I had sudden weakness in both legs, and had to use a wheelchair. I was referred to a neurologist to be tested again.

I am not saying I have MS, but it was always in the back of my mind. During the 3 yrs. of being treated for Fibro, I secretly knew that my diagnosis was incorrect.

After researching once again about my symptoms, MS seems to fit. I know my back pain is due to disc disease and spinal stenosis. The painful spasms I have in my shoulders and legs, as well as spasticity, is not a common symptom of Fibro.

I have heard some people say that pain is not a part of MS? I wonder if this is true. The pain and lack of mobility had me on the brink of death. I would have rather died then to wake up with pain in my feet, weakness in my legs and the debilitating fatigue. Which are symptoms I still have today.

Because I am managing my depression through meds and therapy, I am not at risk for suicide. I dont want anyone here worried that I may take myself out.

I would like to hear from those that have experienced, or have been diagnosed with Fibro/CFS etc... And let me know if pain is associated with MS.

Thanks,
Kat

[mjan]

Hey Kat WELCOME BACK~

I am so sorry you have been going through all this. And yes I have HAD the RX of Fibromyalgia (meds) CF too and RX Provigil. Ok fine, but something in my gut, and I bet yours, says its something else. And it took 6 years (actually about 20) to finally get ALL the correct diagnoses. So hang in there. Many docs are limited in knowledge, testing and need to refer to MS neurologists.

We have the Limboland checkin so make sure you post there too as they truly understand the wait and frustruation.

Thank you too for being so straightforward about your mental illness and suicide attempts. Many are too ashamed and worry about being misjudged, so I applaud your courage AND your spirit--BRAVO!! Glad you are still amongst us. You have been tested a little too much.

Hope..courage, and gratefulness be yours~ You still have purpose, starting now by sharing YOUR story..you help others.

Much HUGS my dear~

Warmly, Jan

[Shashi]

Kat, I'm so sorry you've been through so much. I'm glad you didn't take yourself out. We need you here.

I know some doctors (mostly older ones) think that MS doesn't cause pain, but they are incorrect. Spasticity can cause a lot of pain, as can nerve damage and other problems. So yes, it's entirely possible that your symptoms may be from MS.

Have you had an MRI recently? If not, talk with your doctor about getting a brain MRI with and without contrast.

Also, there are ways of alleviating the fatigue you are suffering with. A lot of people here have tried the two anti-oxidant supplements in my signature with great results. There is a thread on the Nutrition board that I started so that you can read about other folks' experience with them. You can also do a search here and online for more information.

I do hope you get some answers soon. Not knowing what is going on can be so frustrating.

Hugs and prayers,

Lisa

[kitkat67]

Thanks for encouragement! The new neuro I am seeing now has ordered my medical records from all my past doc's. He will then order MRI's or any other tests he sees fit.

So, as if I had not had enough to worry about, my husband has recieved his long awaited transfer to Utah. We are to be there before Jan. 29th. UUUGGGHHH!!!

So, I will have to find a new neuro, psych docs and GP. The good news is I was looking online for neuro docs in utah. There is a very nice clinic right in the town we are moving to. And they have an MS specialist there.

My strength and courage will continue to be tested through this move. I have made a deal w/God...I take suicide off the table. It will not be an option for me.

Thanks for the replies,
Kat

[kitkat67]

Feeling Emotional

I just re-read the responses, and I am feeling very emotional. I cannot express how grateful I am to have total strangers really give a damn about me. My husband is supportive, but not the same thing.

Again, thanks and keep the atta-boys comin! I need all encouraging words in this uncertain quest to find answers.
God Bless,
Kat

[cosake]

Kat -- try to keep yourself "sane" and as stress-free as you can during the holidays. Don't overdo things.

I've cut back myself this year to help avoid a possible flare-up.

Try not to think about your upcoming move until after the holidays - get over one hump before moving on to the other.

I love this board - everyone here is great ! )

[Rich Marcell]

Pain

According to the symptom info on the national ms society web page (http://www.nationalmssociety.org/abo...ain/index.aspx) 48% of MS patients in one study were troubled by chronic pain.

Constantly amazes me when "people" say that pain doesn't happen from MS.

[kitkat67]

About pain

Rich,
I appreciate the link and I am sure others will too. I have wondered why many Dr.s dismiss pain as "in your head". Especially when they can feel the spasticity in certain areas. When my legs gave out on me, the next day my legs were so tight I couldn't straighten them enough to use a walker!

About 18 years ago, I contracted viral meningitis. This nasty monster is swelling of the meninges around the brain and the myelin surrounding the spinal cord. I can only speculate that some MSers have chronic headaches. I dont mean the type of headache I had with meningitis, but chronic migrains that are debilitating.

If MS attacks the myelin, leaving lesions in it's wake, on the spinal cord particularly ,the nerve center of the body- how can that not be associated with nerve damage? I have neuropathy in both feet and it hurts a heck of a lot.


I hope people that read this post will comment or list their chronic pain issues as it relates to MS. I have read a lot on the net, but so many times you find that it doesn't list more uncommon symptoms.

Thanks to you guys. I am gaining more insight and I feel like I can do more each day.
Blessings,
Kat

[nana-anne]

Kat, I'm in limboland right now but one of the things I have been diagnosed with is fibromyalgia and CF like symptoms.

My son (21 years old) has also been diagnosed with fibromyalgia and is in a lot of pain, so much so that he has had to change what he will do with his life and career. His muscles stiffen up constantly so that he uses a cane and has fallen down stairs. (I personally feel his needs to be tested some more!)

Anyway, I don't have a lot of pain but reacted to the pressure point test as positive. I have many symptoms of MS but no lesions. I have had a lot of pain in my right foot, weakness in right leg/arm and the debilitating fatigue as a few of my symptoms.

My pcp and pulmonologist think its possibly MS, old neuro says its all fibromyalgia and new neuro says its all Epstein-Barr.

Interesting enough my new neuro was talking about MS pain last week to me and said that when MS patients have pain it's MS, not fibroyalgia. Just his opinion. I'm sure this is something neuros probably argue about.

Sorry, you are having such a rough time. I truly understand because I have good days and bad days and sometimes I have to tell myself just to wait to tomorrow because it might be the best day yet. Hope some info was helpful in some way.

HUGGS!!! to you, Kat.

[kitkat67]

Hi nana-anne,
I did indeed gain something from your response, thank you. I find it interesting that your doc said that to you about pain in fibromyalgia, is MS. Maybe I am interpreting wrong.

It sounds like your son needs further testing. Although Fibromyalgia can cause some of his symptoms, I dont believe it can put you off balance.

When I saw my new neuro doc, I explained to him about Fibromyalgia DX. But this DX came only after exhausting all tests that ruled out other things. I do have all if not more of the trigger points, but I have many others that are typically not seen in Fibromyalgia.

I also read an article about Epstein Barr. It can be the catalyst to developing MS, RA and Parkinson.

I have not been tested for the virus being present, but know I have it through some unconventional medicine.

I will have you and your Son in my prayers. You both seem to have a lot going on, more than me.
Thanks for your response,
Blessings to you,
Kat