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Old 04-05-2007, 11:13 AM   #1
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Sandilyn HB User
Question Does this s/l Neuropathy & Chronic Fatigue ? (Long)

I have been reading the posts here for some time and finally got up enough nerve to post. I apologize in advance that this is so lengthy but I wanted to give you as much info as I could to see what your thoughts are.

Constant Symptoms
Nausea daily, intermittent (relieved temporarily with hydrocodone), worse upon awakening in a.m. Usually no nausea at sleep. Nausea began suddenly 11/2005 with sudden increase in balance issues, ENT doc diagnosed with BPPV and had Epley. Severe decrease in appetite for several months with loss of about 40 pounds and then ENT said I do not have BPPV due to continued nausea. Nausea has never completely resolved but has continued to slowly improve since latest event on 01/08/07.
Constant disequilibrium (running into things causing lacerations, bruising, staggering, dropping things). Rotational chair testing at U of M showed I had a balance problem and was told it was not caused by inner ear.
SOB since about October of 2006 but appears to have improved some since last event on 01/08/07.
Left-side weakness.
Left-side loss of sensation, head to toe, (as if a line has been drawn down middle of body), worse in face.
Constant left ear fullness and minor hearing loss. Minor hearing loss verified by testing.
Memory/thought process impaired, personality change.
Exhaustion, constant, varies in intensity.
Chronic daily back pain for years.
Symptoms affects all my ADLs. My life as I knew it has been taken away.

Intermittent Symptoms
New onset in last six months of left side nerve pain in limbs, particularly the leg, hands & feet, on/off daily and a sense of uncoordination and weakness on left periodically daily. Since about 01/12/07, same symptoms have begun on right side and appear to be slowly increasing but not as significant.
Left-side intermittent tingling of face and extremities.
Lightheadedness - new in onset since latest “event” on 01/08/2007 but appears to be improving since then.
Periodic tinnitus/ringing, left ear, many times a week and occasional periodic inner ear pain on left as well as occasional stabbing pain on left side of head.
Occasional jerking/bouncing eyes, difficulty focusing and occasional nerve jumping/jerking of left eyebrow.
Choking on saliva or food occasionally.
IBS occasionally.

Testing:
Negative endoscopy and colonoscopy in 01/2006 (after onset of BPPV-like symptoms in 11/2005).
Extensive lab work normal including ANA, thyroid, diabetes.
Several EMGs/nerve conduction studies and a BAER, all negative (as far as I am aware).
Carotid artery MRA negative in 01/2007.
Cyst found on spine.
Multiple cysts on right kidney and scarring, saw urologist, told to just follow.

Past Medical History
Chronic ear infections as child, told I have scarring as an adult and periodically told I have excess fluid in ear.
A urethral obstruction as an infant, unable to urinate, had seizure due to high temp, necessitated treatment.
Chronic UTIs as a child and young adult (bacteria became resistant after so many antibiotics).
Significant environmental allergies.
Morning facial edema, feet and leg edema.
Borderline hypertension.
Borderline hypercholesterolemia.
Osteoporosis/osteopenia, osteoarthritis, chronic back pain, myofascial pain syndrome, possible fibromyalgia.
Very sensitive to many medications causing extreme sedation and/or nausea.
Capillary telangiectasia on pons of brain stem (or cavernous angioma), first diagnosed in 2001.
Pineal cyst.

Past Surgical History
Bunionectomy 2003
Acromioplasty 2003
Diskectomy & Fusion C6-7 1999
Breast Biopsy, benign, 1998
Sinus Surgery 1998
Cholecystectomy 1997
Lysis of Adhesions 1983
TAH/BSO due to extensive endometriosis and large cysts 1973

Current Meds
Singulair 10 mg at h.s.
Rhinocort Aqua Nasal Spray daily
Vivelle Dot Patch 0.375 mg
Stopped Clonazepam 1 mg one at h.s. on 02/02/07
Tried Effexor in mid January, stopped it and started amitriptyline 10 mg one at h.s. on 02/09/07, stopped 03/15/07, and then started on Nortriptyline HCL 50 mg one at h.s. All have increased my appetite. Effexor made me feel very drugged.
Hydrocodone 7.5/750, 3-4 q.d., p.r.n.

Do you think my symptoms s/l neuropathy and chronic fatigue? I was diagnosed by a specialist at a university hospital as having "migraines". I have only had one migraine in my life! This specialist could not explain my nausea or fatigue and body pains. I later came across information on neuropathy and I thought this fit all of my symptoms! I couldn't believe it! My family doc is treating me per the specialist's recommendations for meds and it is just trial & error finding one that works. I hate that my appetite has increased as I am at a healthy weight I want to stay at but it is slowly increasing. I am wondering if I shouldn't ask about Neurontin or Lyrica. Do either of these tend to increase weight? I need something for the nerve pain that will also help me sleep which the low dose antidepressants I have tried did help that issue as well. I am thinking about seeing my rheumatologist to see what his opinion is (he has diagnosed me with myofascial pain syndrome in the past, chronic pain, and possible fibromyalgia).

Thank you for taking the time to read this.

 
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Old 04-05-2007, 10:14 PM   #2
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Re: Does this s/l Neuropathy & Chronic Fatigue ? (Long)

I would very strongly encourage you to get scanned, a lot of these symptoms can correlate with Spinal issues or even perhaps something going on in the Brain. Ask for MRI's. I would go to your primary doc AND go to a Neurologist (maybe even a visit to the ER) with your case to start ruling things out from a Neurological standpoint as well as anything else your primary doc can think of to rule out. Get in ASAP, hopefully its nothing, but if it is something, such as something malignant or something serious along those lines, time can be an important factor. Good luck to you and many blessings, keep us posted.

Last edited by PearlDoves; 04-05-2007 at 10:17 PM.

 
Old 04-05-2007, 10:25 PM   #3
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Re: Does this s/l Neuropathy & Chronic Fatigue ? (Long)

Neurontin and Lyrica can help with nerve pain, just watch yourself for side effects. I'm very sensitive to meds so I particularly feel a need to say that. Lyrica can cause weight gain. If you find info on it you might see other peoples testimoines and such, some say Lyrica can alter mood and such, but the biggest complaint is usually weight gain, some say its not so bad, other have a hard time with it. Neurotin I didn't take for pain when I had tried it plus I was sensitive to it, so I can't account for that one, I would just look for info on it or talk to your doc about it

Last edited by PearlDoves; 04-05-2007 at 10:27 PM.

 
Old 04-06-2007, 04:05 AM   #4
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Sandilyn HB User
Re: Does this s/l Neuropathy & Chronic Fatigue ? (Long)

Thank you for your kind reply. I have been to so many doctors, including the specialist that is three hours away (one way), and have had so many tests - I mean thousands of dollars worth - and no one has given me a real diagnosis that fits my symptoms I feel. There are no neurologists near me that I would want to see (one has an awful bedside manner and the two others are just starting out). I had a good one locally but he recently retired.

I have had many brain MRIs as I have a capillary telangiectasia on the brain but I have seen specialists regarding that and even sent my latest MRI to a world renowned neurologist that specializes in these malformations and he said he does not feel that my symptoms are caused by this lesion at all and he sees no reason to have concern about it. I think it would be prudent to have an MRI of my whole spine too though as these types of lesions can grow there as well.

I know my symptoms could potentially be MS too but I do not have any lesions on my brain but I need to rule out that I do not have any on my spine as well.

I too am very sensitive to drugs. Does the neurontin cause people to gain weight ?? I thought I had read that people had better results with Lyrica for the most part. I had been on Klonopin for a couple years previously and that really helped my back pain but eventually quit working for sleep. It didn't seem to help my nerve pain much though, thus, the change in meds.

It s/l I need to see my rheumatologist and at least get his opinion and see if he can recommend a good neurologist. Is there anything else you all think I should have ruled out???

 
Old 04-15-2007, 02:07 PM   #5
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KatieMac HB User
Re: Does this s/l Neuropathy & Chronic Fatigue ? (Long)

Hi, Sandilynn. Your list sounds a lot like mine and I ended up with MS along with other Dx but I think they like to put names on things...

I have a posting in Sjogren's I won't repeat, but I think lots of us start with long lists of symptoms and at one point I decided they had my name on the nut list. I finally found a DO who is really helping.

Looking at a lot of your symptoms makes me think about heavy metal toxicity. My testing was done through Blue Ridge Labs (?) in Asheville, NC then the doctor treated me and we have the levels down. Lots of my wierd symptoms, tremors, tingling, numbness, balance w/ nausea etc. (it hurt to be tickled) are much improved and I expect they'll go away eventually.

I know how you feel since I've been down that road. Hang in there and keep searching for answers!!

 
Old 04-15-2007, 04:05 PM   #6
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Sandilyn HB User
Re: Does this s/l Neuropathy & Chronic Fatigue ? (Long)

Katie, thank you SO much for replying. I actually was tested just recently for heavy metal toxicity and it was negative. I have never had a spinal tap and I still wonder about that as they have never ruled out MS. I have a RN friend who said she thinks it sounds a little like MS as she has MS but my symptoms are still different than hers but then not everyone has all the same symptoms either I don't think.

I have definitely improved but the daily nausea I still deal with but it is not nearly as bad and then the neuropathy is there everyday now, which that started up on a daily basis back in October I think it was. Also my left arm shakes and moves slow when I extend it and sometimes my left hand doesn't want to work correctly, like when I am typing, which is what I do for my work. My left leg feels the same way, real odd. I thought it was weakness before but now I think it is a nerve "connection" issue between my brain and my nerves/limbs as I will have to really concentrate hard sometimes to make my arm and/or leg do what I want it to do but all the nerve testings (EMGs, etc.) have been normal so I have been told. I know something is still wrong and until it worsens I doubt I am going to get any clear answers from any of the docs I have seen thus far.

Thanks again for your kind words.

Sandi

 
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