Liver doc says see neurologist?

[Else]

Most debilitating damage for me from long-term HCV infection is constant exhaustion (not to be confused with fatigue) and cognitive deficits (the infamous brain fog).  Also have numb toes and that numbness has been slowly moving into my feet.

So peripheral neuropathy and brain fog were dismissed by my hepatologist as unrelated to HCV and to go see a neurologist.  I was stunned at first but things were going so poorly at the clinic that I was just putting my faith and hope in Support Path.

There is so much literature out there.  Sound, peer-reviewed medical literature linking cognivtive deficits to HCV.  And not just HE.  Almost as much literature on peripheral neuropathy.  And the clinic even has labs from my rheumatologist showing elevated gamma globulins "likely due to long-term viral infection".

Does anyone have any guesses as to why she would be so dismissive of such common extra-hepatic manifestions?  Needless to say, none of this info made it into the "letter of support" in my insurance appeal.  Not "letter of medical necessity" per my insurance company's request. 

It specifically says, "this is a letter of medical support, blah, blah".  The letter ends with "I believe treating her HCV would benefit her physical and emotional health."  It feels like they're sabotaging my efforts to get approved.  And the doctor didn't write it - her nurse did.

I just do not understand what's going on here.   

[Kat]

 Hi Else... I've had Hep C. for 35 plus yrs.By the time it was detected,I already had cirrhosis..I've never drank alcohol but did use I.V. drugs when I was in my late teens   early twenties..In 1990 when the test came out and I tested positive,they wanted to do a transjugular biopsy (my platelets were too low to have a regular one),but I refused.I was told to ''hang in there'' that treatments were coming. My only symptom was fatigue.I live alone on a farm in Southwestern Ontario. It wasn't until they spayed the potatoes with their toxic poison,that all my problems began.My feet and legs began to itch and burn,with a million red dots all the way to my waist.The pain was unbearable,it felt like I was burning from the inside.I got into a cold bath to ease the pain,I took pics. The nearest hospital was over an hr away,3 hrs to Toronto, so by the next morn my feet and legs were nearly black so I went to the local Emerg.They had no idea what to do,were going to do a blood transfusion,but my platelets were ok,They told be to get to my Liver Dr pronto.. the black and red spots went away except for 'stains' on my shins, but I now  had severe nerve damage and horrible pain..I was sent to three neurologists before they figured things out.The first one said it had absolutely  nothing to do with Hep C..he did nerve conduction tests and diagnosed me with Peripheal Neuropathy and prescibed Gabbapentin, Lyrica and a few other epilepsy drugs that I couldn't tolerate.My feet felt like they were frozen and numb, but I had sharp shooting pains ,in my legs, toes and soles of my feet He couldn't tell me what caused this and frankly didn't seem to care to find out!....One day I lost all muscle control and had to crawl to the house from the barn.At Emerg they said I had some weird virus attacking my muscles and sent me home.When I stepped out of the truck my left leg gave out and I fell to the ground.  I could barely lift my leg and my foot would just drop.Now I had ''Drop Foot'' I needed a brace and cane to walk,still no answers  I went to a pain speciallsts and was given Hydromorphone for pain....I finally found my way to a neurologist up north who actually cared,He referred me to Dr Vera Bril the head of Neurology at Toronto Western .She ordered a nerve biopsy  and FINALLY I was diagnosed with VASCULITIS.and sent to a Rheumatologist at Mount Sinai Vasculitis Clinic.He has diagnosed me with CRYOGLOBULEMIA VASCULITIS a rare complication from Hep C.  I've had foot drop in both feet 3 times, but recovered.I've got severe Peripheal Neuropathy and Mononeuritis  Multiplex in both feet,and my left hand is permanently damaged  I can't use it at all.I have lost muscle mass in both hands and feet.Prednisone is the only treatment and it has damaged my bones, now I have Osteoporosis,I have a herniated Disc and compression fracture now as well as recently being diagnosed with Type 2 Diabetes..I  believe the toxic potato spays triggered the Cryo,my liver just couldn't handle it..I lived there 33 yrs...I moved to another farm 3 yrs ago and wasn't aware they had spayed the outside and inside for flies..within a month I was in a wheelchair,I needed a nurse and physiotherapist to help me recover..Now I'm waiting to be approved for Harvoni. was suppose to be on it by June and here it is almost Aug.!!! I tried Interferon in 2008 but couldn't tolerate it.
               I have no idea what my counts are.  I asked my Family Dr,yesterday what my last liver tests were and my AST is 103 and ALT 185 last October. is that bad?? My Liver Dr is impossible to reach so I'm not sure what my April tests were...I'm told to just wait...I've been waiting for yrs.I realize that I'm not the only one tho, it's just so frustrating! I am on ODSP so am at the mercy of the Canadian Govt and Gilead.
                Sorry for such a long post Else, but I wanted you to know that PERIPHEAL NEUROPATHY can be related to Hep C!!! Cryoglobulemia gets worse with cold weather,but my hands and feet are bad all yr..my right hand is now going numb too and if I don't get treated soon I'll be totally disabled..My Rheumatologist says treating the Hep C is my only hope,it won't repair the nerve damage but may prevent any further damage. The prednisone sets the Hep C off and does all kind of other damage,so I'm down to 10 mg except for flare ups( My feet swell 3 sizes).If anyone is reading this who has Cryoglobulemia Vasculitis I'd love to hear from you! I just turned 60 and it's been really hard...,nobody understands what it's like to be in this constant nerve pain I haven't found any posts with anyone else having Cryo on any forums
            .Anyway Else I hope your Hep C. treatment will stop your Neuropathy before permanent damage is done and I hope you don't have Cryoglobulemia!!

[Else]

Kat, I am so sorry to hear what you've been through.  People with liver disease don't deal well with environmental toxins (does anyone, really?).  But for people with HCV especially, you don't need that kind of exposure.  It sounds like it really did a number on you.

I'm not at all familiar with the Canadian Healthcare System, but I can tell you that cryoglobulinemia vasculitis will most likely put you right up at the front of the line for treatment.  In the U.S., it's considered one of the very few "highest priority" conditions in the staging system.

Testing positive for cryoglobulins (for HCV it's usually types II and III so is referred to as mixed cryoglobulinemia.) is not at all uncommon for people with HCV.  I've seen various statistics ranging anywhere from 30-70%.  But that, in and of itself, would not get you approved for treatment.  It needs to show end-organ manifestations, which unfortunately you have.    Vasculitis.  Other end-organ manifestations can be a number of kidney diseases.

Your Type II Diabetes should have you at highest priority as well.

Re: your liver labs, I can only tell you what mine show for a standard range of normal:
ALT less than 33 U/L
AST 0-40 U/L
So yes, yours are elevated.

Interesting timing for your post.  Had two back-to-back appts with a neurologist today and yesterday.  Today was nerve conduction tests.  I don't expect any new news - just gathering current documentation for an appeal.

Do you have a case worker with the ODSP?  Because you certainly qualify for treatment pronto.  Because of your CryoVas and diabetes there shouldn't much if any documentation from your liver doc needed unless he was the prescribing physician for the Harvoni?  If not, it may not be worth your time trying to contact him.  Is there anyway you can find out exactly what has stalled out the process for you?

Hang in there.  You're really close to getting treatment.  Then you heal. 

[Kat]

Hi Else,
          Thanks for replying to my post! I know a few people who are on Harvoni who have no complications so I don't know why I haven't been approved.Most Drs here have no idea about Cryoglobulemia or Vasculitis The Cryoglobin test can't even be done in regular labs,I have to drive 3 hrs to Toronto just to get it done ..Only Liver Specialists can prescribe treatment for Hep C  here.My Hepatologist is the head of the Liver Clinic at Toronto Western so I thought I was in good hands but I always see one of his resident Dr.s and he comes in for 2 minutes..I had an appointment with him in April and waited 3 hrs to be told he had to catch a plane! That's when I was told by one of his Residents that it'd be another 2 months.This has been going on for nearly 2  yrs.Last week I was told Gilead requested more info for my application,and it was sent. so  someone should contact me soon.  I'm just so tired of waiting when I know there's a drug that can help me.Before it's too late!!!
           I forgot to mention my Rheumatologist treated me with 3 infusions of Rituximab  when I had the bad flare up almost 3 yrs ago..it helped me recover but did a number on my immune system., all my hair fell out too!..I've had pneumonia for a month now and they think maybe the prednisone has damaged my lungs..so I can't start Harvoni until this clears up.
            Else,you sound like you already know alot about Cryoglobulemia and Vasculitis. I just wanted to let you know that I was also told  Peripheal Neuropathy was not related to Hep C when indeed it was!!!  Sorry you had to go through nerve conduction tests  OUCH!

             
           

[Else]

I've been looking, Kat.  I just don't know how the Canadian Health Care system works let alone how they determine access to Harvoni.  I wish I could tell you who to call so you could track the progress of your case or get an update.  Maybe whoever told you Gilead needed more paperwork?

My heart goes out to you.  Taking immunosuppression medication while your body is fighting a virus is a dodgey combination.  Have you seen a doctor about your pneumonia?  Maybe antibiotics might be in order?

I know a bit about cryoglobulinemia.  Enough to know that false-negative lab results are really common because the protocol is so temperature sensitive.  Time sensitive too.  Cryoglobulinemia type III takes from 5-7 days for the cryoglobulins to precipitate out of the serum and a lot of labs only run the test for 72 hours.  So the good news is, even if you had to travel far, you found a place that could correctly diagnose you. 

Thank you for sharing your story.  For more info on Gilead's support plans in Canada maybe you could start a thread, "Question for Canadians".  I have no idea how many Canadians are on this forum but everyone seems to share information generously.

Yeah, nerve conduction tests - those'll wake you up in the morning. heh.   

I hope you feel better soon.  Keep us posted.

[rnpj2000]

I don't know if you are still here but I was wondering if this all started out with this strange vibration or tingle up your legs?  I have this  thing going on and no one knows what it is.

[Else]

I don't know if you are still here but I was wondering if this all started out with this strange vibration or tingle up your legs?  I have this  thing going on and no one knows what it is.

No, I can't say I've had that symptom.  Sorry I can't be of more help.

[Joe NM]

Else,
Sorry to hear about your frustrating situation! Hopefully that doctor isn't always so dismissive! It's difficult to pin down if it's ONLY HCV that could be causing those symptoms, so some doctors are hesitant to directly link them. Most specialists document them as 'possible HCV symptoms' at the least...who knows maybe they are documenting those symptoms but just come off as dismissive in-person? In appeal letters that I draft for doctor review, I often write, 'these symptoms could resolve if the patient's viral infection is cured.'

Sounds to me like the nurse who drafted the letter of necessity (or 'support') might be a good contact for you at that clinic...they should have SOMEONE who's keeping track of your case behind the scenes  a little...a lot of that work gets delegated out but that doesn't mean that nurse isn't competent to draft that letter (or appeal) or doesn't care...if anything he/she may prioritize the annoying insurance issues more than the doctor. Sometimes it's just a matter of having a 'person' at the clinic, even if it's just the front desk! And, as always, the 'squeaky' wheel does tend to get the grease...

All of the information you brought up could be included with the appeal if needed, sounds to me like you should schedule a meeting with them if they're drafting an appeal so you can review it with them, that way they could explain in-person anything they're putting in there or excluding.

Feel free to PM me or post a new thread if your case hits a dead-end (unless you've started a new thread already and it's my fault for not finding it...), doesn't sound like your doctor's office has given you a lot of support so far, or they're not communicating well!

[Else]

Thanks for replying, Joe.

An independent review organization overturned my insurance's denial of services.  I received written notice from them on a Friday and my specialty pharmacy, working with my insurance company, had the Harvoni to me by Tuesday.

I was able to put together an effective appeal due, in large part, to the help of a member of this board who successfully navigated that route herself.

Also, my insurance company was very timely and competent in getting me a copy of everything my prescribing doctor's office had ever sent to them, i.e., prior authorization documentation and any additional information sent by the doctor's office regarding the first appeal.

(Odd way to go about getting your medical records, right?)  This way I was able to see what hadn't been sent despite assurances to the contrary.  It made a huge difference.

..they should have SOMEONE who's keeping track of your case behind the scenes  a little

 
Yes they should.  But for anyone who's new here, please don't assume this is the case. 

The good news is that my 12 wk course of treatment is going really well.  I will receive my second bottle of Harvoni on Wednesday.

[Phoenix]

Greetings Else,

Good luck on your journey.  I have had peripheral neuropathy for about 20 years, primarily my feet.  Also started to have problems around the same time with my neck.  Been to many neurologists and they 're not sure of cause of either condition.

Came across this article online. http://www.ncbi.nlm.nih.gov/pubmed/20034694  Hope it has info you can use.  I'm about two thirds of the way thru my treatment and my neck and peripheral neuropathy both seem to be improving. 

Was also diagnosed with non-Hoskins lymphoma and that is also improving.  Now that was affecting my immune system.  May getting rid of the virus help you with all your problems.

Best of luck with your treatment

[Else]

Hi Phoenix, thanks for the link.  I never had a low platelet count.  I'm a little unclear how this article relates to neuropathy.  I'm not 100% sure how (or even if) my peripheral neuropathy is related to my HCV status.

But since starting treatment, it has stopped progressing so I think it is likely there is a connection.  I'd like to see a reversal, but I guess we'll just see.   

[Phoenix]

Hi Else,

Sorry, wrong link.  Here's the correct one  http://www.hindawi.com/journals/jir/2012/236148/

Take care

[Else]

Yes indeedy!  I am VERY familiar with the article.  I printed it out and took it with me to the appointment I had with the neurologist.  He said he wasn't familiar with that journal and wasn't going to read it.

I went to him, referred by a hepatologist, to find out why I had peripheral neuropathy. One initial consult, one nerve conductivity test and one follow-up appointment later... he told me I have peripheral neuropathy!  Grand total of over $1500 for nothing.

He muttered something about "we all get older" (I'm 53!) and "it's very mild, no cause for concern."

Thank goodness I have a wonderful GP or my faith in allopathic doctors would really be dashed by now.