I wish anything would 'relapse'

[Chowda]

Sorry guys, just kind of venting...

Everyone talks about relapsing, or symptoms coming and what brings them on. I cannot relate to any of this and it scares me.

In May '13,I started to have vision problems, very slight. Then no balance, very slight. For about a week, I had very severe stabbing pain in what I felt was my left lung. I was a smoker for 10 years and thought I must have cancer. One morning I woke up and my feet were numb. I decided it was time to see a doctor.

Blood test, negative on everything including cancer and diabetes. Next was CT scan, mri avoided because of eye surgery I had. Negative. I had weird chest, not pain, itchyness now, but scratching it hurt like it was an open nerve. My doctor didn't seem surprised and said worst case scenario: MS. Referred to neurologist. Also by this time my left hand had gone numb for a few weeks, but then it was normal.

Neurologist had MRI and evoked potential scheduled. The next Monday I saw my doctor again because I was having headaches. He called the company that did the MRI and they said they couldn't give him the code, it was too big, they have to fax. About 10 mins later, doctor came back and said he was 98% sure it was the worst case scenario. He called the neurologists office and got me an appt 2 days later.

Saw neurologist and he said based on MRI and evoked potential 'I am showing advanced stages of MS--for my age.' This was the first week of Dec. And when I said 'very slightly ' to begin, just know that now I'm very dizzy at the slightest head movement. The number feet was mainly my right, now it's mainly my left, both my feet are still numb. Vision has gotten worse, one morning I woke up and had very double vision and still do. Also my left hand stopped being numb. A few weeks later it was back, and a different numbers.

Every symptom got worse and I developed new ones. I constantly read posts about relapsing symptoms. What are those? 'i had an attack of occular neuritis' what is an attack? 'some days I almost forget I have ms' how is that even possible?
I know what the users mean but I cannot relate to one shred.

'I'm 28 so I'm too young for PPMS. Relapsing symptoms can last weeks' do they last for 8 months now?

I am seeing an MS neurologist on Thursday. Finally some progress. I'm sorry for the length of this post. I know no one's a doctor so it's just your best advice.

Do I actually show signs of RRMS or do you feel more PPMS?? I've just been wanting answers for 8 months now. And yes, I've got lots of psychological issues too. Luckily no severe pain except for that one week. So just tell me something, I'm just really... I'm sure you can imagine. I can't relate to anything on this forum except some symptoms, but they have never gone away for me

Okay, I'm don't ranting. If you read this, thanks. Any input is appreciated. I just needed to get this off my chest.
And also note I am in Canada, a different healthcare system than most of you have experienced. I've gotten some advice that must be only for US based patients. The kindness is appreciated.

[Thinkimjob]

I wish I knew, and could help you, Chowda.

A "good" sign that it might be RRMS is that you say you had a numb hand for a few weeks, then it went away.

How's your mobility? Can you walk as well as you could when all this started?

Have you been offered any steroids? They might help.
If you can't have a MRI, have you had a Lumbar Puncture?

RR usually starts with numbness and tingling and vision stuff. My first symptoms, 16 years ago, were numb fingers and ON. The ON went away, but I have had double vision when I'm tired or hot, ever since.

The scar is still there when I have my eyes examined.

The numb fingers on my right hand never regained any feeling.

The flare I'm having, steroid-free, has lasted at least four months and waxes and wanes in intensity. Heat (not a problem for you at the moment), stress and doing too much make it worse.
Nothing has gone way completely, but then I'm 16 years in, and obviously a bit SPMS.

Other thing, "remission" doesn't mean you necessarily go back to where you started.

All the best.

[Chowda]

Thanks for the input

I believe I wrote in the post how the numbness in my left hand stayed for a few weeks then was gone. A few weeks later it came back but differently. It's been numb going on two months soon.

When this all started I had a small lack of balance. Now I have very poor balance and am always dizzy. I walk with a weird limp and need a cane. It was worst like 2 weeks ago where i was convinced I could no longer shower, only baths. Today I had a shower and my balance was a lot better but still very poor. Still limp, need a cane.

I've had the one mri and got diagnosed. In Feb I am getting an mri on my spine.

I am only seeing an MS neurologist first time Thurs. I have never taken any medication except vitamins B12 and 4000mg D a day.

But thank you. It really helps me mentally/emotionally just to talk about it.

When I do get meds, I've heard thing dealing with interferon can make you sick a few weeks at first. And steroids can help with dizzy/balance.

Does anyone know how long the meds take to relieve symptoms?

[Thinkimjob]

Me again. Steroids, pretty instant. Interferons won't fix old stuff, a few months to cut down new stuff. And having had Beta for five years, long ago, expect to feel very flu-like.

[Temagami]

Please try eliminating all milk products from your diet- cow, goat or sheep. Research has found a connection between a milk protein and attacks on myelin.

My MS journey started in 2011- the foot tingling has abated significantly, but comes and goes on a daily, even hourly basis, though nothing like at the start where every footstep felt like a tuning fork. Eliminating the milk products lead to an immediate decrease in the buzzing.

If you really have MS, try to get on a medication ASAP and check out George Jelinek´s web site about overcoming MS- lots of good advice. When trying to narrow down the meds, check out the UK MS site- it has a section on all the med choices that is very user friendly. Also check out Terry Whals´information regarding diet. You can do a lot with diet.

Hang in there.

[tspaulding]

Thanks for the input

Does anyone know how long the meds take to relieve symptoms?

The DMD's, disease modifying drugs are to slow progression and reduce relapses, not to help current symptoms.

I would talk to your ms neuro about the meds and to read about them so you are aware of the side effects and which one seems best fit for you.

Tasha RRMS, dx 1995 age 21

[fairpace]

Chowda,
The MS DMD meds (interferons, copaxone, etc) are not intended to help your symptoms. Their function is to stave off further progression & minimize future relapses. (You'll find a lot of information about these on the Medication forum.)

There are other meds that can help with symptoms like pain, tingling, spasticity etc. Make sure to write everything down so when you see your MS doc they have all your current symptoms. Many of these meds are not perfect, have side effects, etc. I think it can be trial and error. The symptoms forum might be helpful here.

Although I have no idea what type of MS you have, I wouldn't consider your age too young for PPMS. (However, I don't think you have this.) Since you say the MRI result suggested advanced, then SPMS would be more likely (I think this one is more closely linked with age, due to the fact that it kicks in after a longish stint of good old RRMS.) Not sure you have this either... MS is so individualized, everybody presents differently & has a completely different journey.

As I write this, I recall that my sister's first symptoms were ON and numb arm. She was 30 at the time. Steriods took care of the ON and about a year of recovery helped the arm. She is now 25 years into the disease and doing great (much better than I).

Since you're just newly diagnosed, I would focus more on what you can do for yourself at this point (rest during day, get lots of sleep, eat well, start a journal, etc.)

I do think the initial flare (the one bad enough that gets a person diagnosed with any type of MS) can be scary and cause a lot of anxiety.... in return, the anxiety and stress of potentially have "the worst case scenario" can make that flare linger. Plus, you have to get used to a new "normal".

Good Luck with your MS specialist. Make sure to read up on the DMDs (medications forum). Push the PPMS & SPMS fear to the back of your mind for now.

[DebbieB]

Chowda, First of all, I'm so sorry you are going through this. My heart goes out to you.

For definitions of the different "types" of MS (as well as "relapse", "episode", etc.) see:

http://www.nationalmssociety.org/abo...sis/index.aspx

For what it's worth, my first episode was - in some ways - quite similar to yours in that it was "severe" and I was hit on multiple fronts. It was severe - within 3 days I couldn't walk - was in a wheelchair for almost 18 months. I share this because the good news is I did - eventually - go into a remission and was - ultimately diagnosed with RRMS. I enjoyed many, many years after that initial "episode" (despite how brutal and lengthy it was) of enjoying life with few symptoms.

I am now - 24 years later - in a different place - and am SPSS. But I just wanted to share with you that MS affects each of us very differently, and despite being hit very hard right now, you may still enjoy a remission in the future.

Always hang on to hope. Please keep us posted as to your progress. In the meantime, I shall keep you in my prayers.

Debbie

[Chowda]

Thank you so much Debbie. Reading that really helped me stop worrying so much.

I've seen a graph and PPMS is a straight line up, SPMS is similar in that it gets worse, but there are ups and downs. I guess those are remission.

I recall someone told me on here that PPMS is not covered under health insurance in the US. I don't have to worry about coverage like that in Canada but from that I gather PPMS is more 'serious'

But 18 months until remission, so I've had symptoms for 8 months that have progressively gotten worse. But sometimes they get a bit better, but have never left there's hope!

[Kimba22]

Hi Chowda,

I recall someone told me on here that PPMS is not covered under health insurance in the US. I don't have to worry about coverage like that in Canada

I think what you are confusing this with is insurance coverage for the DMT's. Since none of the DMT's are FDA approved to treat PPMS (since none have been proven to work in PPMS), it is highly unlikely any insurance company in the U.S. will pay for one to treat PPMS.

but from that I gather PPMS is more 'serious'

This is not necessarily true. Each "brand" of MS can be either mild or aggressive.

Only time will tell what each person's course will ultimately be. I truly hope yours will be mild.

Take care,

[Tawanda]

There is currently no way to accurately study the effectiveness of DMTs in PPMS, so most doctors will err on the side of caution and dx most of us with RRMS and treat us as such. Nobody has an easy road of MS as far as I can tell from being on this Board, so do the best you can with the MS you got...I think each of us has our own individual brand. Through trial and error with treatment, diet, and physical activity, most of us find a way to have a decent life.

I remember that first year. I call it my "lost year". For those people diagnosed with MS who were not freaked that first year, my hat is off to you! I have made adjustments. Things have gotten better, but I will always remember that getting shot out of cannon feeling I had at the beginning You will be OK.

[Tawanda]

I do think the initial flare (the one bad enough that gets a person diagnosed with any type of MS) can be scary and cause a lot of anxiety.... in return, the anxiety and stress of potentially have "the worst case scenario" can make that flare linger. Plus, you have to get used to a new "normal".

Yes, yes and yes!!! Well stated!