questions about MS

[Rocketjs34]

Hello,

I am really new to this forum.  I am having more issues lately that I am worrying aobut.  I needed to find a place that I can ask some questions about the problems I have been having.  I will try and give as much information as I can.  So far I haven’t been given a diagnosis about what is wrong just “we will schedule another test” type conversations.  Every test that I have done has come back normal.

I am a 36 year old male and have been seeing a neurologist since 1992.  I have had tremors my whole life and they have never been an issue for me.  I also have had migraines with auras and numbness in my face.  The migraines stopped in 2000 and then started up again in 2007.  I have been on Sumatriptan and Naproxen for the migraines since that time.  In the past year the frequency of the migraines started to increase and I was put on Gabapentin.  Currently I average around 1 migraine a week.

I started to have issues with dizziness and balance starting in May 2014.  My GP said it was Vertigo.  My neurologist had me do an MRI of my head and he said that everything looked normal.  No other tests were scheduled and it was just a “let’s see how you feel in 6 months”.

In early October 2014 I started having severe pain in my right arm.  I can only describe it as a cross between a broken bone and muscle strain.  I saw my GP in regard to this.  I had tests done to rule out Carpel Tunnel and tendon damage.  He also ordered multiple blood tests for B12, Diabetes, and several others that I can’t remember now. (They took around 6 vials of blood)  All of the tests came back normal.

After the blood tests I started to have burning pain in my right leg along with numbness and tingling in my feet.  My GP mentioned that he was going to schedule several more tests “to rule out something like MS”.  He had me schedule an EMG for my arms and legs.  I had the EMG done by my neurologist and again the tests came back normal.  My neurologist doubled my Gabapentin and scheduled a follow up a month later.  He also said that he wanted to send me in for another MRI for my head and neck which I have not had yet.

Just as a side note I am also being treated for Depression and Anxiety.  I see a counselor every other week and I am on Pristiq and Trazadone.  I have been seeing a counselor since 2007 and just started the meds end of November 2014.  

Within the last two weeks several other strange things have been happening. My tremors are getting worse with twitching in my arms, leg, and face.  I feel like I am leaning to my left when I walk, getting tongue tied while speaking, and every so often when I get up to do something I will forget what I was going to do.  

I have recently started to read up on MS.  It seems most of the issues I am having relate to that disease.  Again I have not been diagnosed with MS or anything else for that matter.  All tests have come back normal so far.  I am very worried about what is wrong with me.  I know that what is happening is not normal.  I am also frustrated that no one can figure out what is wrong.  And because of all of the negative tests part of me feels that it’s all in my head and I’m fine.  I have started to journal my daily symptoms so I can give my neurologist more accurate information.

Sorry that this is so long but I wanted to give as much info as possible.  Here are some questions.

Should I be worried or am I just over reacting?

Do my symptoms sound like it could be MS or is it something else?

How long does it take for MS symptoms to progress?  In my case things have progressed in 8 months.

How long will it take for a diagnosis of MS?

Thanks

[Rocketjs34]

I had my follow up appointment with my neuro yesterday.  He told me that my MRIs (brain, C-spine, Thoracic-spine, and Lumbar-spine) were all normal.  Did some more basic exams and ordered blood tests for heavy metals.  He also told me to seek a second opinion.  He advised me to try and get to the Mayo Clinic and not wait for the test on the blood to come back.

I am going on my 3rd consecutive week of numbness, weakness, and tingling in my left leg.  It is driving me crazy.  I had a migraine as well when I was on my way to the doctors.  Not having a good week so far.  Going to my mom’s for Christmas Eve, so at least I have that to look forward to.  

Hope everyone has a Merry Christmas and a happy New Year.  

[kwarendorf]

Keep us posted :-)

Kyle

[Rocketjs34]

Thanks.  I'm seeing my Neurologist tomorrow to go over my spine and head MRIs.  Hopefully I can make some headway to a diagnosis.  

[HVAC]

The U.S. medical system has a flaw. Doctors specialize and it is like you are on a conveyer belt and you go by and the doctor only sees his Specialty. If you don't get the right doctor looking at you then you don't get diagnosed. I have cancer and it took six years and seven doctors to be diagnosed. It is a really cancer to find. In my case they were blaming it on MS.

The second part of the puzzle is neurologists are slow. They like to look at people over months or years. I did not understand this and was frustrated by how long my diagnosis took. My first MRI showed MS. Ever subsequent test showed MS. All the other tests were negative. It took two years once they found the MS 6 neurologists for a diagnosis.

If you do not have a diagnosis having your symptoms addressed is important. you do not need a diagnosis for symptom relief. It is the same before diagnosis as after.

Two places to look for someone to be a gateway to the medical system is either a very good GP or an integrated practice. We have at a local university an integrative medical practice. They look at the whole and can sometimes figure things out other doctors miss.

There are many neurological disorders and about 30 mimics to MS that are not neurological. It helped me to understand all this.

What has worked for me is going in and saying "Something is really wrong with me and I don't know what it is".

Also a GP can do a neurological exam and  rule that in or out.

I think being in limbo is the hardest. It is scary and frustrating. You just want answers. Medicine is like trouble shooting a car. You see what works until you find what does not except people unlike cars are all different.

Alex

[Rocketjs34]

thanks for the reply.  The limbo part is very tough.

[Rocketjs34]

Thanks for the response.  

I have been forgetting to tell the doctor things when I get into his office.  I'm hoping the journal helps pinpoint something.  

[jensequitur]

Journaling your symptoms is a great idea. You're going to want to write stuff down, because you'll forget about it once you're in the dr's office.

Diagnosing MS seems to be a laborious process. I know many here have been in limbo for years, waiting for a diagnosis. The other problem is that typically MS is a relapsing-remitting disease, meaning that your symptoms might get better. MS progresses, but it's neurological damage - meaning that you may be having tiny little deficits now, that will end up being bigger problems in the future. My experience is that I have a relapse which causes a symptom, and it'll take about three months before that symptom resolves, only to be replaced by something else.

As to whether you should be worried, I would say not really. MS is a PITA, but it's not like it will destroy your life. My activity levels have really changed since my diagnosis - I can't run any more, and I get really fatigued in the middle of the day. I went through about three years of feeling really crummy, with cognitive problems, leg weakness, arm spasticity, and torso tremors. Since 2010 I've been relapse free and feeling pretty good, with the occasional sick day off work because of fatigue issues.

[4happygnomes]

Hi, sorry you are experiencing so many symptoms, I too am in limbo and it is very frustrating to know something is wrong with you but testing comes back normal.  There are so many great people on this site, I hope they can help you sort it all out!