I want my life back

[connie527]

Hi all,
Thank you in advance for all the support you give to those of us in "limboland" I am not diagnosed,just keep having symptoms that point in this direction and feel like you are the only ones who understand sometimes.

I have posted here before but it's been a while because I've been in "ignore it"mode. Unfortunately, I've had stuff come up that are forcing me to see docs again,ugh!

Some background,38 yr old mom. Relatively healthy until 2 yrs ago when all this neuro stuff started. I had had a few yrs of IBS symptoms,feeling very tired,just not myself previous to this,otherwise healthy.

2 yrs ago had sudden onset numbness in pinky,right leg felt"dead". This subsided after a short time, then I began having tingling in hands then feet over next month or so, all the time. 24/7 at varying degrees from tingling to numb,falling asleep feeling. Then my right side suddenly felt less sensitive than my left, like there was a distinct line down my body from head to toe.Went to er, all said and done the only test that showed anything was my brain MRI showed "multiple tiny scattered punctate foci in white matter " which didn't enhance.

Neuro at hospital said atypical migraine,told me tingling in hands and feet completely unrelated. Yeah,right! Went to her office for f/u and she gave me wrist splints for carpal tunnel even though neuro tests were negative for that(sometimes I wonder!)

2nd neuro-waste of time and money!

About a yr later I was still having this tingling-parasthesias-buzzing of right foot-wet patches-tugging on my toe (nope, I checked it all week it happened and nobody was actually pulling on it .LOL).I also began to have pain and heaviness in my right arm for months. Also had random nerve pains throughout my body including my eyes.Several times I would have holes in my vision for several hrs.

3rd neuro-MS specialist in Boston. Did every test under the sun including MRI's with contrast on 3T machine, Brain,Cervical,Lumbar.Lumbar puncture,Lyme,autoimmune etc. All negative except for same white matter changes as first mri. He felt I didn't have ms, neuro exam has always been negative. It's all sensory,nothing objective shows up.

He offered me nerve medicine to "mask" the nerve pain. I declined as I didn't feel ready yet to "mask" the symptoms when I had no diagnosis. He also said he wasn't convinced the pain I felt wasn't "unlike the ones we all feel heare and there). I wanted to slap him. Talk about making me feel like a complainer. Really,did he think I would waste my time and money to go to all theses appts if I didn't feel this was unusual?Despite this, I thanked him at the end of the appt for being so thorough and he just looked at me and said "I'm not looking for any thanks".What?
Where do these people come from?

Fast forward to today, I still have buzzing, only now it's my whole right leg and sometimes my left as well, parasthesias galore, you name it, buzz here,sting there,tug tug. And since January, I've been having stomach problems as well. At least once a week, I get a sudden onset of 8 out of 10 abdominal pain, cramping feeling sometimes associated with strong urge to have a bowel movement and continued pain after ,usually lasts about a half hr.Have seen GI doc, ruled out everything, had upper GI,Ultrasound,ct scan,bloodwork,celiac,lactose intolerance etc. No answers. Went to er tuesday as it lasted 2 hrs.Everything negative again. Am scheduled for an Upper GI xray and colonoscopy next month.

Also this past week I felt the urge to go pee was on my way to bathroom and it just came out ,not a little dribble,a full urine flow.

Finally my questions...Can stomach cramping be caused by ms if everything else has been ruled out? Also, where do I go from here? I just want my life back...And if I can't have it back I want to know why, accept it, be treated for it and move on with my new normal. You know what I mean? Do I go back to the neuro doc? Do you feel I should put ms out of my mind?

I am sorry this is so long, thank you for listening!
Connie

[connie527]

Thanks for your comments and taking the time to read my post. It does make it a little easier to keep "truckin through" as you put it so well. :)
Connie

[rendean]

Hi Connie,

Your history is similar to mine in several ways. Just keep on trucking through to the next neuro . I had 5 neuros before I had a definitive  dx.

Hang in there ...the answers willl eventually come.

In my thoughts,
Ren

[connie527]

Hi all,
Thanks for your replies...I got teared up reading them...I guess it just feels good to have somebody listen sometimes and remind me that this isn't all in my head. I guess it is pretty emotional for me that I have been dealing with this for a few yrs now and can't talk to those close to me about it anymore.

I feel like without a definitive diagnosis people probably pretty much assume it's in my head at this point. I hope that's not true, but I'd be lying if I said I didn't suspect that my family etc  might think this.As you all know,diagnosed or not, It's hard to tell people who have never been through any of this how it feels, how isolating it can be.

I don't mean to minimize how it must feel to actually have the diagnosis of ms.I do hope and pray I don't have ms but I don't feel like it can be ruled out due to my ongoing problems and lack of other explanations.

Again,thank you all for your replies and kindnesses...I will be poking around I'm sure and will think about your advice.

Connie

[Sparkysarah]

Hi Connie

Welcome back and i am so sorry that your symptoms appear to have deteriorated. You explained well what you are feeling and it sounds like you are really struggling with everything.  I think I would agree with Lulu that it sounds like it is time for fresh eyes to take a look at you. I am not sure if you have done this previously but if you can summon up the courage and enthusiasm to start again, take with you a clear simple timeline showing the dates and symptoms that you have experienced (without too much narrative - keep it factual).  There is information in our health pages (top right hand of page) about constructing a time line.

It is very frustrating being in limboland, but all I can say is that although you want answers I am sure that you wd be happy to be told once and for all that it is not MS. As you seem to be aware, it is a diagnosis of exlcusion and you appear to have had quite a lot of tests previously. Let us know hoe you get on and what you decide to do and you are very welcome to dip in and out of this forum and will find kind, understanding knowledgeable folks who will be happy to support you in your quest for answers.

Best wishes

Sarah

[Lulu54]

Hi Connie and welcome back.

MS can cause a wide variety of ills and everyone is different.  I know a woman with a positive MS dx who has only one symptom - she can't stand to have her hands directly touch anything.  She wears gloves to stop the pain.  other than that she is perfectly normal.  

My dear friend DJ has horrible bladder spasms that the doctors say is her MS.  When you ask about stomach cramping, are you talking abdominal area or the stomach?  I'll assume stomach - I'm not sure about that so I'll leave that question to someone else.

The bladder and bowels complaints are at the top of the list of MS woes...... you already know that so it could be part of your problem.  

This isn't like baseball and three strikes and you're out..... My advice is move on to neuro #4.  It's not that they don't want to help you, they just need to see the evidence.  Maybe the time that has elapsed and a new doctor would be useful.  And you could also reconsider the meds for the nerve pain.

be well, Lulu

[Ojibajo]

Your Subject line caught my eye because I had to meet with my HR department regarding my FMLA leave and I told them the exact same thing.