Undiagnosed Symptoms Community
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Avatar universal

At a loss

I am a 41 year old professional woman who has been dealing with a slew of issues for over 4 years now. Initially, I wrote them off as natural aging or stress although I really was not even stressing. After awhile you try to find excuses for the issues. However, there came a point with my medical background where I knew my body and I know whatever is going on is not normal in any sense of the word. The symptoms began with a constant low grade fever of 99.9 and higher that lasted a good year and a half. Since 98.7 is what they deem as average on the slide scale.
I will mention my temperature has always been 97.6 (my normal). So as you can imagine the fever was very uncomfortable for me. Along with the fever Ii had horrible all over body pain- Not flu like, but constant aching in my skin, joints, hands, feet and neck. No injury so that is ruled out. My eyesight went from vision that required no glasses to needing progressive lenses in a two year span. Must be age- Again I thought! Sometimes my vision get very blurry rub my eyes for like 5 min and its back to normal- kind feels like a have a coating on my eye (like looking through saran wrap.
Soon the numbness kicked off it thing- left first and slowly right. I have dropped things often over since I was 24 so just considered myself a klutz. Well, I go to my family doctor who suggested a Rheumatologist. Hey at this point I will try anything. Bone scans- some darkening. ANA was "normal" 80:1- high but normal. All other Ra test normal. I told him my mother has Lupus-“ I don't think you have lupus- They diagnose it to easily and your mother more than likely does not have it either.”So- now my mother doesn’t have it! LOL  OK!!!
Hands still numb and hurt like hell- I am a dental hygienist so my hands are my lively-hood. He says I think you have carpel tunnel- Sends me to a neurologist- He does the electrical testing and confirms carpel tunnel bi-lat. When I go back to the Rheumatologist he says wow- he never comes back with a positive Carpel Tunnel diagnosis. Had higher reading I guess. Sent me to an orthopedic guy- he said I don't think its carpel but since your test indicates it lets do it!  Within that year had my left hand done no change in numbness but I think wow must be a healing thing. -Finished PT- Four month’s later right hand. That one not so well- infected- long healing time. I told them ok so if I have carpel tunnel- How does that explain my feet? No rational explanation. I take it for what it is- Walk away! Because….
So I don't go to the doctors for over a year and a half- Pain gets worse- numbness increased. Now into legs but still not lost ability to walk on them- THANK GOD!
There are days I cannot turn a door knob. Cannot open a jar and try my hardest to do it until my family will walk up and help me out. I refuse to ask suppose it is pride.
I am so exhausted ALL THE TIME.  I cannot believe I am so tired even though I sleep 7 to 8 hours a day. I have difficulty focusing. I used to be Johnny on the spot and I find it hard to believe in four year I forget my toothbrush even after I say to myself: grab your toothbrush. I go to the doctor- They tell me I have adhd- Rx me adderall small 10 mg bid and I am still tired not sleepy but physically exhausted. Oh I still don’t remember what I am supposed to do. So now as soon as a thought comes in my head I have to do it because I know I will forget. Speaking of my brain I think I was 24 when I realized I had balance issues- If I move to fast I get dizzy and see little flashes of light but quick and fast- Not all the time either but happening more than before. MY new brain this are sounds. If someone turns a door know, drops something, if I hear a clap or click it is literally like a volt of electricity shooting through me. It mostly begins in the evening and continues into the night.
For years now I have crappy BM’s - no pun intended. I will go days like 4 or 5 without being able to go and even then I have to help it out cause my rectum will not do it by itself- Unless of course I have diarrhea, which generally follows the day after the constipation- and the cycle repeats. Small rash on face that comes and goes- but it was diagnosed as dermatitis. But hey I guess- Why not!
Guess it is normal to have to urinate ever hour of my but that must be psychological too :)
I left leg gives out at times when I am walking and it’s almost like it doesn't pick up all the way and I stumble on it.
In the last year while I am scaling teeth I hand literally freezes and I cannot roll my instrument to go around the tooth. I have had to take my hand away readjust my wrist and truly concentrate to release the instrument.
I was diagnosed with RLS a few years back and was given baclofen I guess it worked a little but still if I am sitting down my leg jumps. Not limited to legs only my arms do it too- Just legs more often.
Now the kicker- I go back to the rheumatologist- My hips, hand a feet continue to hurt- Maybe after 1 ½ years they can figure. ( My hubby talked me into that )
Oh so I have 2 intraosseous cyst on my third and forth metacarpals of the left hand so  the first thing he says is “I don’t think you have cancer”- WHAT???? That though never entered my mind. Again- I go over the issues again and I can tell he is looking at me like---- She’s nuts! My hubby suggested I see a different one but I felt like maybe something could be detected now verse then and he would have the older results to compare it to. I take a whole panel again. I call and the say everything is normal. I ask for a referral to a neurologist they give me associates. I requested a different one and for them to fax it there.
I go online to print my blood test for them so I do not have to do it all over again and I see that my ANA titer is 160 1 (double from my last) with nucleolar pattern- ANA high but neg- My BUN level are both low 5- I believe.
I am just so tired of talking to these doctors who all act like nothing is wrong. You cannot tell me this is all normal for a 41 year old woman and at the time it began I think I was 36 or 37 to feel like this. And here is the question of the century- WHY WOULD I WANT TO MAKE MYSELF FEEL LIKE THIS? So I can invest my money to visit them and deny myself a vacation in the process. That is just an easy excuse to not to have to do your job! Sorry to all the good doctors out there who have to live in those shadows 
If anyone knows of a good neurologist in the Chicago- Milwaukee area please let me know
At a loss
3 Responses
987762 tn?1331031553
Hi there, i'm not sure if your aware that this has posted on the MS community forum or not, i'll assume it was planned because your asking for a neurologist in Chicago Milwaukee. Sorry i'm in the wrong country to help you with that one but i wanted to point out that ANA 1:160 plus your pattern of sx, suggests to me that you are looking at something like Lupus and probably not MS. Also in MS we have peripheral sx but are nerve test results are typically normal which indicated the issue is the CNS and not the peripheral, though i must admit to not understanding if yours were truely correct by the end, sorry thats probably me though its quite hard to follow large chunks of text.

I'd try posting this in both the Lupus forum and also try the limbo forum, they might be able to help you on a number of issues. Oh and i'd like to suggest you have a go at looking at seeing a different Reumie, not sure if they ever specialise but if they do, try to find someone who specialises in connective or Lupus.

Good luck.........JJ
Avatar universal
Thank you for helping me find the correct spot to at least begin. Hopefully this will help.
Have wonderful day!
Avatar universal
You sound just like a lot of other late stage Lyme patients.  There really isn't anything else that explains all of your symptoms except for Lyme.  Lyme itself can cause significant GI disruptions, but if you have a coinfection called Bartonella, the GI and neuro symptoms can be much worse.

You will need to find a LLMD, a Lyme Literate Medical Doctor.  You can get a referral from a local Lyme patient support group or by going to ilads.org.  There is a lot of controversy over Lyme, and it is critical if you want to regain your health, that you go to a doctor experienced in tick borne diseases who will treat you until you are well, not just for some arbitrary period of time.

I tested false negative twice before I got tested at IGeneX, a specialty lab that does more advanced testing.  I went through a dozen doctors who couldn't diagnose me until I finally found an LLMD.  I have been on antibiotic treatment for 7 months now and I am soooo much better.

Please come post on the Lyme forum for other perspectives.  We have a wonderful and knowledgeable group there.

This might also be helpful.  It was instrumental for me in figuring out what I had when doctors couldn't.  http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
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