So Confused, Would Love Some Opinions

[ChrisinAZ]

Good evening everyone,

My name is Chris and I am 33 years old, male, and living in Arizona. I've been seeing Mayo Clinic for some neurological issues. I still feel like I don't have a good handle on the situation and would appreciate input anyone may have.

June 2013 onset of numbness and tingling in my left hand, shoulder and arm. Also LH Syndrome when I bend neck forward, but only in my lower legs.

MRI reveals single, small, enhancing, dorsal cord lesion in cervical spine. Brain MRI is completely normal, thoracic spinal cord MRI is completely normal. No Oligoclonal bands in CSF and no elevated IgG in CSF. Normal neurological exam. No other symptoms besides those described above. No family history of MS or autoimmune diseases.

Been called a Clinically Isolated Syndrome with a fairly low chance of progressing to MS by Mayo Clinic, but that is where they left it...hardly a comfortable place to be when you are still in pain.

Right around the same time the neurological symptoms started I was also diagnosed with Pulmonary Sarcoiosis and put on 20mg Prednisone per day. I am now being weaned off this medication by the Pulmonologist at Mayo Clinic who says the Sarcoidosis is minor and does not need to be treated. Mayo Neurologist has pretty much ruled out Sarcoidosis being cause of neuro symptoms (though outside Neurologist actually disagreed).

Questions:

1- Is it normal to have symptoms show no improvement after 4 months from a single cervical cord attack? Am I stuck with the tingling and electrical pains for life?

2- Should I have been offered Solu-Medrol or something similar for the lesion?

3- Having had no other infections or diseases (besides the Sarcoid) what could cause an isolated incident of demyelination like I had?

4- Can I take some comfort in the "low chance of progression to MS" that Mayo has given me? I read a lot about MS online and hardly see any stories about CIS which did not recur...perhaps these people just don't spend time on the internet writing about their stories.

Thanks so much for any help.

Chris

[Fed Up]

In all probability you can rest in comfort this may not progress to M.S...but, cover your basis and be on a healthy diet, proper vit/min, exercise, rest..etc and treat yourself as if you have M.S..

No ONE could say for certain you cannot get it, a year from now.

Because you have had such a serious insult to your immune system with the Pulmonary Sarcoidosis, I would be suspect that, That would make you more prone to progression of some sort of auto-immune disease.

I'd work as hard as I could to keep my health and prevent it. Hopefully, you won't have another event.

If your symptoms persist and slowly get worse, I'd go back for a re-eval. With the Pulmonary issue, it would seem prudent for another MRI in a year, though. imho

I believe I'd re-ask the neurologist at Mayo IF this serious threat to your immune system would change the follow-up care and evaluation? fed

[Thinkimjob]

I don't think you're going to get any better answers than you got from the Mayo Clinic. They're as good as it gets.
I'm sorry you're going through this, but I don't know enough to be helpful.

[SNOOPY]

Hi ChrisinAZ and welcome to MSWorld.

I can only respond in regards to how MS works. If you end up with a diagnosis other than MS my answers do not apply

1- Is it normal to have symptoms show no improvement after 4 months from a single cervical cord attack? Am I stuck with the tingling and electrical pains for life?

Yes.

MS symptoms can come and go, be residual (permanent) or completely resolve. There is no time frame as to when symptoms may or may not resolve.

Learning to live with MS can mean learning to live with symptoms. There are Symptom Management Medications which can be of help for some symptoms.

2- Should I have been offered Solu-Medrol or something similar for the lesion?

It depends.

If the lesion was active (inflammation) the steroids may have helped. Usually steroids are not used for abnormal sensations (vibrations, tingling, pins and needles, numbness).

3- Having had no other infections or diseases (besides the Sarcoid) what could cause an isolated incident of demyelination like I had?

I believe that will be one of those "who knows" type answer

Also LH Syndrome when I bend neck forward, but only in my lower legs.

I have had L'hermittes for 28 years. It can be experienced as you have stated.

[hunterd]

"1- Is it normal to have symptoms show no improvement after 4 months from a single cervical cord attack? Am I stuck with the tingling and electrical pains for life?

2- Should I have been offered Solu-Medrol or something similar for the lesion?

3- Having had no other infections or diseases (besides the Sarcoid) what could cause an isolated incident of demyelination like I had?

4- Can I take some comfort in the "low chance of progression to MS" that Mayo has given me? I read a lot about MS online and hardly see any stories about CIS which did not recur...perhaps these people just don't spend time on the internet writing about their stories."



Signs of no improvement after four months could possibly indicate another spinal cord issue. Your neurologist is best suited to address this.

Steroids of any kind have pretty serious side effects ( that may or may not happen), they are also an anti-inflammatory agent as I understand them ( I have never had a steroid treatment). I do not think ( someone please correct me if I am wrong) that steroids will make your lesion disappear.

I have no idea of an answer for question number three. I am not positive about what may or may not happen with CIS, AND NOBODY can predict what may or may not happen in the future. With that being said, I would advise that you enjoy your life to the fullest.

I would make sure that all your vitamin/mineral needs are met. Especially your vitamin D levels.

[22cyclist]

I think SNOOPY answered your questions perfectly. The only one she left out was the one about CIS progressing into MS. It is true that most do. I am surprised that your docs did not offer you a disease modifying drug as an option. These are the CRABS drugs you hear about, the shots. Now there are pills available to take. Anyway, most CIS patients are offered these to try and keep the progression to MS down. I would talk to my neurologist about these drugs.

Good luck and Take care

Lisa
Moderation Team

[Special Kay]

I was originally diagnosed with CIS on the basis of one big cervical spine lesion, two small (equivocal) spots on my brain, and O-bands in my CSF.

I was offered a DMD, to forestall progression, and I began Avonex right away (I'm taking Tysabri now). For what it's worth, I have had no progression in 7 years, either in symptom profile or MRI findings.

I will tell you, however, that my symptom-ology was by far the worst during my first year.

Many of the things that bothered and freaked me out so much that first year (paresthesias in my legs, forgetfulness/cog fog, unsteadiness, and fatigue) are mostly things of the past. I assume I was in an inflammatory period then, coupled with the stress of it all, that made things worse.

[ChrisinAZ]

Thank you, everyone. I will take some of these questions and comments back to my Neurologist.

[ChrisinAZ]

I was originally diagnosed with CIS on the basis of one big cervical spine lesion, two small (equivocal) spots on my brain, and O-bands in my CSF.

I was offered a DMD, to forestall progression, and I began Avonex right away (I'm taking Tysabri now). For what it's worth, I have had no progression in 7 years, either in symptom profile or MRI findings.

I will tell you, however, that my symptom-ology was by far the worst during my first year.

Many of the things that bothered and freaked me out so much that first year (paresthesias in my legs, forgetfulness/cog fog, unsteadiness, and fatigue) are mostly things of the past. I assume I was in an inflammatory period then, coupled with the stress of it all, that made things worse.

Kay, thank you so much for the reply. Would you say it took a full year for the sensory symptoms to recover and that they eventually disappeared 100%?

The stress definitely makes my symptoms worse, I know that for a fact, but unfortunately it's tough to get past the stress when you are dealing with an unknown illness.

Thank again.

Chris

[Special Kay]

It's hard to remember specifically, but I would say that I have not noticed any significant numbness/tingling for at least 5 years. It did take me almost a year to get diagnosed, so I probably had the symptoms for 18 months or so, off and on.

During that first period, since I was so nervous about having (and fully expecting) a flare/progression, I was kind of freaked out all the time and hyper-vigilant when it came to my body (I'm an athlete, so it comes naturally

Basically I was waiting every day for the other shoe to drop. My PCP sent me to get trained in biofeedback to help manage the anxiety, and I would recommend that to anyone (MS or not). It is SO helpful!

Also, getting my body out of an inflammatory situation probably did the most. Not sure what made the difference for me, but I take a DMD, Fish Oil, and Vitamin D, as per my neurologist. Oh, and I've also been a vegetarian for a long time (pre-MS).

Good luck!

[Fed Up]

I believe I'd re-ask the neurologist at Mayo IF this serious threat to your immune system would change the follow-up care and evaluation? fed

I do feel this is an extremely important question? AS you have had a severe INVASION to your immune system...

That DOES change things. hope this is helpful. fed

[ChrisinAZ]

I did ask my Mayo neurologist about the Pulmonary Sarcoidosis possibly activating my immune system and causing a one time demyelinating attack in my spinal cord. They said it's possible, but it's an area that is currently being studied and there are no definitive answers to give me (of course).

Based on clear brain MRI, negative CSF tests, and only sensory (but hellish) symptoms, they have given me only a 10% chance of progressing to MS. That makes me feel better but I am still worried of course...especially not understanding how the ongoing Sarcoidosis could affect things.

My lesion popped up 3 months ago but my symptoms have continued unchanged so I am getting 3 days of IV Solu-Medrol this weekend. Had the first round today and haven't noticed a difference in the numbness or LH sign yet. Doctor told me that if Solu-Medrol doesn't help, my severe anxiety may be a contributing factor to why my symptoms are continuing even though the initial lesion is presumably healing by this point. My anxiety is through the roof and it's caused major physical symptoms in the past so I'm not going to doubt them...though I may ask for another MRI just so I can be sure the lesion is healing and there are no new ones.

Thanks all,

Chris

[ChrisinAZ]

Controlling anxiety and how it can affect symptoms

I did ask my Mayo neurologist about the Pulmonary Sarcoidosis possibly activating my immune system and causing a one time demyelinating attack in my spinal cord. They said it's possible, but it's an area that is currently being studied and there are no definitive answers to give me (of course).

Based on clear brain MRI, negative CSF tests, and only sensory (but hellish) symptoms, they have given me only a 10% chance of progressing to MS. That makes me feel better but I am still worried of course...especially not understanding how the ongoing Sarcoidosis could affect things.

My lesion popped up 3 months ago but my symptoms have continued unchanged so I am getting 3 days of IV Solu-Medrol this weekend. Had the first round today and haven't noticed a difference in the numbness or LH sign yet. Doctor told me that if Solu-Medrol doesn't help, my severe anxiety may be a contributing factor to why my symptoms are continuing even though the initial lesion is presumably healing by this point. My anxiety is through the roof and it's caused major physical symptoms in the past so I'm not going to doubt them...though I may ask for another MRI just so I can be sure the lesion is healing and there are no new ones.

Thanks all,

Chris

Forgot to mention in my last post, but I have found that medications which improve my mood and relax me also reduce my sensory symptoms, including LH sign. When I take 10mg of Ambien in the evenings my symptoms typically almost disappear. During the day, if I am stressed (which is always) the LH sign is horrible and can cause an awful feeling of electrocution in my arm and legs when i bend my neck downward. My left arm will also tend to have increased numbness, tingling, and pain when I am in stressful situations...sometimes flairing up and then back down in a matter of minutes.

If any others here have had experience with cognitive behavioral therapy or biofeedback and i would love to hear more about it. I really admire those of you with definite MS and associated disability that who are able to live lives not dominated my anxiety and fear.

[abeautifullife]

My LH sign did go away after about three to four months into my first attack. So it is not unheard of by any means. Mine never caused me any pain, it was just odd.

Also, if it is any comfort, I have full blown MS (I have the dx and MRIs to prove it, lol) and my life has basically changed not at all since dx. I work full time in a difficult, high stress field and I am thriving so far. I take my meds, no side effects, and I do very well, like the previous poster who has basically the same story. I have a little residual stiffness in a hand and that is about it in terms of symptoms. So take your health seriously, of course, but live life and thrive too. Do not let worry consume you.

[hestrella9]

Hey Chris. I have a similar situation and reside in Phx as well. I might have some good resources for you. I am online if you want to chat in the online forum.

Ella