All sorts of things going on

[tripnstumble]

I'll try and be as helpful in what's been going on without having to bore everyone to death :)

Ok, my problems started almost 2yrs ago. My pcp took blood work and at that time the only things that showed up were a high sedrate of 50+ (don't recall the actual number now) He sent me to a Rheum. who did more blood work. Everything was fine. Got tired of my pcp not doing much of anything to help so I found a new pcp who so far has been doing WONDERFUL to say the least. Just not fast enough for me for as terrible as I feel. Basically my symptoms fall under MS & Lymes type symptoms (easier then listing it all) I have had a brain MRI which was neg, Lymes tested 3x's which has been neg. Celia neg. hepatitis neg. HIV neg, RA, Lupus all neg. Sjogrens neg. B12 is borderline which we're trying shots now just to see if it's to low for me, was 236. I got my first shot 3 days ago and so far no diff. Also, pernicious anemia is neg. Here are some of my latest blood work results which some are fine, some are not so fine.

WBC Count (high)   13.5 (4.13-9.78)
RBC Count             4.53 (3.81-5.12)
Hemoglobin            15.2 (11.3-15.3)
Hematocrit              44.7 (34.5-45.6)
MCV (high)              99 (81-97)
MCH                       33.6 (26.8-34.3)
MCHC                     34.0 (31.4-37.4)
RDW                      12.2 (11.6-15.1)
Platelet count          240 (127-372)
SEGS                     66 (45-77)
Lymphocytes           25 (14-44)
Monocytes               7 (4-12)
Eosinophilis              2 (0-6)
Basophilis                1 (0-1)
Absolute Neutro (High)    8.61 (1.81-6.82)
Absolute Lymph         3.26 (no range)
Absolute Monocy       0.91 (0.00-1.22)
Absolute EOS           0.26 (0.00-0.40)
Absolute Baso (High) 0.13 (0.00-0.08)
Automated Differential Method

ALT (SGPT) (Low) 29 (30-65)

I've also had my thyroid checked which was normal, liver function which is all normal, ANA is 1:40, SSA 32, SSB is 11.CPK is low at 27 (30-135)

Some of my symptoms are pins and needles, my hands, feet and face feel really hot but no swelling or fever, constant headaches, night sweats, problems with sleeping, nausea, weight fluctuating, stomach cramping pain almost like I'm hungry, Sometimes I can't eat no more then a few bites and I'm full, Sometimes I don't eat for days and sometimes I eat like a total pig lol Vertigo, itchy skin with no rashes, stumbling, terrible upper back pain which so far they are saying is from bad muscle spasms that are straightening my upper spine, terrible, terrible fatigue to the point where I can not function, my muscles are going to nothing in my legs, heat intolerance, my glands where you get a sore throat tend to get annoying. They don't actually hurt but I can feel their slightly swollen, I sometimes have a difficult time swallowing to the point that I start choking (thankfully this doesn't happen often!) It also happens with drinks not just food/pills. Sometimes terrible chest pain when swallowing. A cough that seems to come and go. My Dr. has diagnosed me with cognitive disorder which also comes and goes. I'm around 130lbs give or take with the fluctuation in weight so anywhere from 125-135 in a given month. I'm 40yrs old. And right now this is about all I can think of. Anyone have any ideas, clues what could possibly going on???

My next Dr. appt. is Nov. 28th, she wants to check my WBC count again and she said if it's still high she wants to investigate that. She also has me going for a chest x-ray for the cough. I'm sure it's not a cold because I've had this annoying cough for 8yrs now. Also, been told No on fibro and Chronic Fatigue. Also my sed rate tends to jump around a bit. Last checked it was pretty low.

Anyhow, any thoughts or ideas I can mention to her would be great. She does a great job at listening and taking time to try and figure out what's going on.

[Londres70]

Please keep us posted about your situation.  

I hope they find answers for you soon and that you can start feeling better.  

[tripnstumble]

Yes, I have been very impressed with her myself. Just feeling so icky for so long it's not fast enough for me :( But, she listens and does take the time when I do see her. She's trying to get me in to see a neuro., pt, has sent me to a sleep Dr. etc. So, at least she doesn't think she's a know it all :)

[Londres70]

Yeah, sounds like your physician is very thourough.  I'm impressed.  

I was thinking Celiac's could be another possibility.  

[tripnstumble]

Yep, I listed all my symptoms on a piece of paper for her and also yes on the celiac which was neg. she did say if the B12 shots help she wants to do a biopsy to completely rule out celiac. FUN! lol

[Londres70]

Did you mention the swallowing issue with this new physician?  

Have you been screened for Celiac's Disease?

[tripnstumble]

No LP has been done yet, I have a referral to a nero. just haven't gotten an appt. as of yet. From what I can see on my labs a T4 free was done, don't see any of the others you have here listed at least not on this lab anyhow. The swallowing feels almost as if it's a muscle spasm which I get them a lot as mentioned. I just almost feels like I get spasms that seem to effect my throat area and it would be about the same area I get them in my back as well.

They did put me on pred. 3x's last year. Just the weekly dose. I felt pretty good while on it, but once the pred. was gone the icky feeling came back. The last time I was on it, it didn't help like it did the two times before. I don't recall the medication name, but they did put me on one last year for bacterial infections which didn't help. My original pcp I guess was just trying it :)

I have had issues with fatigue for over 20yrs and for 20yrs they have been testing me for Lupus and of course for 20yrs it's been neg. Whatever is going on seems to have just gotten a lot worse out of the blue. When it did start up about 2yrs ago I was going through a lot of personal issues so was totally stressed out. Which I'm thinking is what kicked "whatever" this is in. I have since for over a year kept my stress level down, even taken medication to keep me calmed down. But, no better.

[boognell]

I went through what you are experiencing only I had extreme weakness in my extremities, to the point where I couldn't even walk or lift my arm. I was tested beyond belief... I mean EVERY test you can imagine--all negative. I also have asthma and we had some leftover prednisone in the house. I took approximately 60 mg. and guess what? Next day the symptoms abated and day by day (I tapered the prednisone off) I got better. It still happens occasionally and I just rest and take some low dose prednisone and it has always worked so far, thank God. Good luck to you, my friend, I feel your frustration and fear. Let me know what happens, please. God bless.

[Londres70]

I would say this is infectious or autoimmune.  

Have you had a LP (Lumbar Puncture) done?

What thyroid labs were done?  A TSH, free T3, free T4, Anti-TPO and Anti-Tg should be done.  Any scans of your thyroid/neck done.  The swallowing is concerning.  Your throat should be imaged and/or scoped.